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Transradial research subjects needed
The Center for Bionic Medicine at the Rehabilitation Institute of
Chicago, and Northwestern University are looking for volunteers to
participate in a research study titled: Application of Targeted
Reinnervation for People with Transradial Amputation (STU00101444).
We are inviting those who have a unilateral below-elbow amputation to do laboratory and at home
testing of a multi-articulating hand.
Participants must be willing to undergo Targeted Muscle
Reinnervation surgery - an established surgical procedure that
provides easier, more intuitive prosthesis control for individuals
with arm amputation.
Research participants will be compensated.
Participants must meet the following criteria:
Between the ages of 18 - 95
Have a unilateral below-elbow amputation
English speaking only
Available for 6 visits over the course of 12 months
Previous myoelectric user preferred
For additional information please contact: Kristi Turner, OTR/L at
312-238-1364 or kturner@ricres.org
Greetings,
We would like to take the time to introduce ourselves to your
organization. 'We' are Stacy Miller and Melissa Vocke and we make up the team
that is, 'Sew Adaptive, LLC'. Sew Adaptive is init's final stages of
construction and planning for our upcoming launch. We are a company designed to provide alteration services of
clothing for amputees and others, creating adaptive solutions. In essence we
are an online tailor shop specializing in alterations for individuals with
prosthetic limbs. Our mission is to provide solutions to make life simpler. We
provide solutions ranging from velcro fasteners and zippers to many other
non-standard solutions. We would like to be in contact with someone from your organization
to promote word of our upcoming business, help those in need and
possibly receive feedback. Thank you for your time and consideration,
Melissa Vocke and Stacy Miller Melissa@sewadaptive.com Stacy@sewadaptive.com http://www.sewadaptive.com - COMING SOON!!! 757-713-1084 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ People w Physical
Disabilities Needed for Art Project
The
Project: In a photo series
accompanied by a collection of short narratives, I hope to capture, in
individual creative portraits, people with permanent physical disabilities in
their daily lives. I want to showcase
these extraordinary individuals not in how
they came to this place of disability and difference, but how they live and
thrive in their lives, in their bodies, though the physical challenges may be
great. This photo series is meant to
empower not just people with disabilities, but anybody who has seemingly insurmountable
obstacles in the way of their goals. The
tone of the project is intended to be serious, determined, honest, yet joyful
and hopeful. Together we will redefine
the term disabled. Subjects
needed: Seeking people with
permanent physical disabilities, including but not limited to those who are
blind or deaf (or have some other loss of senses), amputees or those with
non-functioning limbs, or persons with congenital or neurological disorders
such as palsies or leukodystrophies.
Disabilities may have been a result of congenital abnormality, illness,
military service, or accident; how it
happened matters little to the project.
Though I am open to any type of physical, visible disability, at this
juncture I am not inviting those with mental disabilities to participate. To
Apply: Applicants must be
willing to be interviewed at least once and be photographed; applicants under
the age of 18 will need parental consent to participate in the project,
otherwise the project is open to people of all ages, genders, races, and
lifestyles. Preferably, applicants live
within the city of San Francisco, but surrounding cities are also
acceptable. All those selected to
participate in the project must sign a Model Release Form which will be
provided. Please email a brief
(2-5 paragraph) bio of yourself that includes… -your disability -how your disability
affects your daily life or how it doesn’t -a list of your
hobby/ies, and -one thing you’re proud
of. In the email, please
also include your phone number, the city in which you live, and three (3) dates
and times in which you are available for an initial phone interview. A photo of yourself attached to the email
would also be appreciated, but isn’t mandatory. Note: Applicants will
not be paid. This is an opportunity to
participate in a meaningful, powerful, unprecedented project with the intention
of public gallery display and/or web/print publication. Artist
Bio: I am a female, biracial
writer and photographer, wife and mother, and both able-bodied and an
above-the-knee amputee. What most people
would consider my disability, I consider my liberation. I chose to have my leg amputated when I was
18 years old after a very long, painful saga that started with a congenital
vascular syndrome called Klippel-Trenaunay-Weber Syndrome. I can now do things post-amputation that I
literally only dreamed of prior to it.
Being disabled hasn’t held me back from anything, including traveling
the world, raising my two toddler daughters, and practicing yoga. It is with this love for my life and love for
my “broken” body that I seek out like-minded and similarly able persons to
bring my creative project into fruition in hopes of showing our community and
young people like my daughters that disabilities are not the end of one’s life,
but rather can be a source of love, tolerance, patience, and determination. I hope you’ll join me in
this endeavor. -KLG I am Rasika Fernando who resident at # 204/26 St’ Nicholas Road, Munnakkaraya, Negombo, Sri Lanka.
I am a disabled youth, whose one leg is short (by birth).
I am wearing an artificial leg and attend to my normal day to day work without any difficulty.
I am from poor, humble fishing family and my ambition is to be a useful person engaged in a recognized employment.
I passed the G. C. E (Advanced/Level) Examination in commerce
stream in the year 2000. I followed several computer courses and is in
possession of recognized certificates to this effect.
I am very competent in MS-Word, Excel, Power Point, Internet and email. I also have four years working experience.
Further more I have under gone training in leadership, skilled development and capacity building locally as well as abroad.
I worked as the coordinating officer at NGO (Sri Lanka Foundation
for the Rehabilitation of the Disabled) a local voluntary organization
working for the rehabilitation and the rights of the disabled persons
in Sri Lanka and counts over 4 years experience.
I also have taken part in athletic competitions for the disabled locally as well as abroad and have achieved the following:
At the National Festival of Sports for the Disabled held in Sri
Lanka for past several years, I have won 4 gold, 2 silver, and 2 bronze
medals for 100 and 200 meter races, long jump and high jump events.
I have become the best athlete at the AIDEX Sports Festival for Jaipur Limb Users in 2004, 2006, 2008 & 2009.
In 2002 at the FESPIC Games, held in Busan, Korea, I represented the Sri Lankan volleyball team and won the Bronze medal.
In 2006 at the FESPIC Games, held in kuala lumpur, Malaysia, I represented the Sri Lankan athletic team.
Presently I’m looking for a suitable career opportunity or
employment skill training in overseas because I would like to get a
good artificial limb.
So could you please let me know, whether you can assist me to find
suitable career opportunity or any suitable skill training in your
organization or from others?
Otherwise please let me know how you can assist me.
I hope this request of mine will receive a favourable
consideration at your hands and your cooperation in this regards will
be highly appreciated.
Awaiting a favourable reply,
Thanking you!
Yours faithfully
Rasika Fernando <rasi_117@yahoo.com>
Negombo, Sri Lanka - Tuesday, May 01, 2012 at 17:04:52 (GMT)
Hi, my name is Coco.
I became an amputee due to a drunk driver.
I wanted to find out from any of the amputees "Do you ever get use to being and amputee"?
I've accepted that my leg is gone. But, sometimes I find it hard to accept being an amputee.
Is there anyone else that's having this issue?
There is such a stigma attached to individuals that are considered different. Even in the medical community.
If, there is anyone that wants to talk please feel free to email me.
Coco Vanzant <cocovanzant@hotmail.com>
Atlanta, Georgia USA - Tuesday, April 17, 2012 at 01:43:14 (GMT)
Dan.
In your response to Nicole Bracken in Greenville, South Carolina
24 Jan. 2012.
The ERTL procedure is great as I have a modified ERTL, which uses
the Tibula as the bridge. The only problem is I suffer from phantom
pain.
I receive the pain day and night every day. I consider
it shock rather than pain because it's an impluse.
There is a branch of the peroneal nerve just off center to the left
of my left stump of BK amputation thats the problem area on me.
I also have phantom sensation which I can live with.
There are problems that can develope.
I have read that 80 percent of amputee's do have some form of phantom pain.
Mike Brughelli <mikebrug@aol.com>
USA - Monday, March 12, 2012 at 13:58:34 (GMT)
Hi Dan & all,
Thought you might be interested in my blog I got up & running
(so to speak) to celebrate my fifth ampu-versary as an above-knee
uni-ped.
I'm a writer, horseman, survivor of religion-based childhood medical
neglect (which resulted years later in the amputation), philosopher,
mom, homesteader and free-thinker, and the blog is my musing.
I just turned 50, and although my insurance company seems to plot
against me to withhold necessary knee braces & prosthetic
components, I forge onward.
I swim across lakes, build shed, porches & fences, love my new
chainsaw (a Husqvarna!) & am working on publishing my memoir &
novels.
As part of my Shameless Cripple Enterprises I wondered if I could
post a link to my blog? I know when I was making the transition,
hearing others' stories was a lifeline.
http://lizheywoodwriter.blogspot.com/
Thanks for giving us this link to come together, Dan.
Liz Heywood
lheywood2@frontier.com
lizheywoodwriter.com
664 Dawson Hill Rd
Spencer NY 14883
607)589-6539
Liz Heywood <lheywood2@frontier.com>
Spencer, New York USA - Wednesday, March 07, 2012 at 17:15:32 (GMT)
I
am in the middle of getting a new prosthetic knee, and my prosthetist
is trying to switch me from a dry fit suction socket to a seal in
liner.
Does anyone have any experience traveling with one of these?
In particular the bottle of rubbing alcohol used to lubricate between
the liner and socket, especially the small pen sized spray bottle to
keep in your pocket for emergencies?
Thank you!
Rick Morgan <Richard.Morgan@steelscape.com>
Longview, WA USA - Tuesday, February 21, 2012 at 20:29:28 (GMT)
Hi All
I have a 22 yr old step-daughter who had bka done 12 years ago. She
has had 27 surgeries to deal with bone spurs. The last surgery, 7yrs
ago, was the Ertl procedure but it didn't work, no bridge formed.
I'm writing today because she has a swelling the size of an orange
below her knee. It's painful, hot, & bruised looking. She has had
recurrent pimple like things that have white gunk and blood come from
them. They leave icepick looking crater scars.
The doctors have given her endless rounds of antibiotics, but nothing
changes. The last appt a few weeks ago they told her they think it
might be a bursa.
She has another appt tomorrow, but I am very concerned about the
amount of swelling & bruising - I worry about blood clots, &
haven't been able to find much info that deals with complications this
far out from surgery.
I am hoping somebody can explain more about bursae and neuromas, or if her symptoms sound familiar to anyone.
Thank you so much, Worried Step-Mom
Sarahbeth Johnson <bravekitty69@gmail.com>
Oklahoma USA - Tuesday, February 14, 2012 at 19:44:15 (GMT)
I
recently came across your website and was truly impressed by your humor
as well as by the breadth of information shared through your website.
I am currently a senior in college, interested in physical therapy.
I am writing a thesis paper about the perception of phantom limbs, and
wanted to hear a more personal side to this topic so that I could get a
better sense of the ramifications of this phenomenon and the proper way
to treat patients with phantom limb pain.
I wanted to know if anyone had any insights or stories that they would be willing to share about phantom limb perceptions.
What types of therapy, if any, worked to reduce phantom limb pain?
How did prosthetic limbs affect phantom sensations?
How did others respond to complaints about phantom limb pain?
Is there any advice that you would give (to therapists, amputees or
just the general public) in terms of dealing with or educating about
phantom limbs?
Any insights would be highly appreciated!
Thank you so much!
Eli <elzin7@gmail.com>
New York, NY USA - Tuesday, February 14, 2012 at 13:24:57 (GMT)
My
Sister-in-Law Louise in late January (last month) lost her second leg,
also at the top of the thigh, one year after the loss of the first.
She is a fighter, does her part, and now needs some extraordinary help
(support), in order to recover optimally (the boredom set in after one
week).
She is much beloved of her family; three children and numerous
grandchildren, et al. She is a young (barely) 67, and has lived a most
mobile life...
Is there a support group such as yours in/near Valdosta GA?
(Tallahassee FL; Thomasville GA; Albany, GA)?
We would like to capitalize on this window of (boredom)
opportunity, before she slumps back. She's been in this downward spiral
for over three years, and believe now is the time for her to rally and
restore.
And we want to help!
Thank you SOOO much!
Sandra Stanley <sstanley59@gmail.com>
Valdosta, GA USA - Thursday, February 09, 2012 at 19:40:14 (GMT)
Hello,
I am a physical therapist working with a beautiful 7 year old girl who was born with only portions of each of her extremities.
She wears bilateral legs for much of her day, but does get around
well on her stumps. One is perfectly round and the other has a residual
foot with minimal bone.
She likes to play outside without her prosthetic legs but is limited as
her mother cannot find shoes and she wears out her stump sleeves.
She saw some children at her last Shriner’s hospital visit who had
tennis shoes for their stumps. Her mother describes them as round shoes
(no forefoot or toes) with lace up high tops.
We cannot find them on internet searches.
Does anyone know about these shoes and how to get them?
Thank you for your help.
Mary Pickett, PT, MS, ATP <mpickett0689@gmail.com>
Oklohoma City, OK USA - Saturday, February 04, 2012 at 17:09:48 (GMT)
Nicole Bracken in Greenville,South Carolina
My answer to your very real & logical question is to have a Below
The Knee (B/K) amputation performed by an ERTL trained Orthopedic
Surgeon.
For information on the ERTL Procedure (I recommend this to ALL potential amputees) check out the ERTL information at
www.stumps.org
Or simply GOOGLE it.
The ERTL Procedure is the ONLY surgery I know of that is tailored
to produce a residual limb that properly & comfortably accepts a
prosthetic device all but eliminating Phantom Pain.
This procedure buries the nerve endings in soft tissue protecting them
from any future trauma and creates a bone bridge eliminating the
wishbone effect at the limb’s end.
If you have the time please let me know if this or any response you get from the GUESTBOOK at www.stumps.org is helpful.
Good luck & Happy New Year!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, January 24, 2012 at 23:28:31 (GMT)
I am hoping to get some input today.
I am twenty six and for the most part in very good health. However, I
have had an issue with my right foot since I was seventeen and
fractured my fifth metatarsal.
As I have come to realize over the years mine was a much more
complicated fracture than was originally diagnosed and the initial
treatment did more to hinder the healing process than help.
To make a long story short, the bone has refractured seven times since
the original break. Although I'm not in severe pain, I have had four
surgeries to no avail and the bone at this point pretty much stays
broken. This has relegated me to using crutches most of the time.
My husband and I would like to have children, but are hesitant
until there is some resolution with my foot. He and I have had a couple
of discussions regarding the possibility of amputation.
I have received no medical advice or input at this point but have
started to do some research so that I will be at least somewhat
educated.
I am seeing my orthopedic surgeon again in two weeks and am going to
ask her opinion and for a referral to a surgeon that can perform this
surgery.
I wanted to ask your readers what questions I should ask this surgeon,
what questions should I be prepared to answer and basically what should
I know before the appointment.
Any general information and/or input would also be welcomed.
Thank you very much for your help.
Nicole Bracken <nicolebracken2@gmail.com>
Greenville, South Carolina USA - Tuesday, January 24, 2012 at 23:13:51 (GMT)
Tuesday, January 17, 2012, 9:57 AM
Colleagues,
The University of Washington is developing a new measure of mobility
for persons who use lower limb prostheses to be called the Prosthetic
Limb Users Survey (PLUS).
Existing measures of prosthetic outcomes have shortcomings including
considerable floor and/or ceiling effects and no solid evidence that
the scores are responsive to clinically meaningful changes. With PLUS,
we aim to address such limitations and create a valid, reliable, and
meaningful instrument for measuring prosthetic users' mobility.
As you can imagine, it takes a considerable amount of work to
develop a new outcome measure and it cannot be accomplished without the
assistance of prosthetists, therapists, physicians, and persons who use
lower limb prostheses! As one key step in the development process, we
are currently seeking 1,200 volunteers who use lower limb prostheses to
fill out an online survey about themselves, their health, and things
that they can do with their prosthesis.
We would greatly appreciate any help our fellow O&P providers
across the United States might offer to let persons with lower limb
amputation know about this survey (www.mobilitysurvey.org). Eligible
respondents will receive $25 for taking the survey.
If you are interested in helping us get the word out, we have
created IRB-approved informational posters, flyers, and cards that we
can send you free of charge. You can fill out the PDF order form
http://uwcorr.washington.edu/mobilitysurvey/files/PLUS_order_form.pdfOr
contact us directly. The materials you order will be mailed to you so
that you can display, post, or provide them to prosthetic users as you
wish.
You can find out more about this ambitious project in the following articles:
http://www.oandpbusinessnews.com/view.aspx?rid=83673
http://www.oandp.com/articles/2011-03_02.asp
Please consider promoting this project to people with lower limb
amputations and sharing this information with your colleagues who treat
or interact with persons with lower limb amputations. The more people
who participate in this survey, the better the outcome measure will be.
The measure that we are developing will be made freely available, so
you can look forward to using it in the future in your classrooms,
clinics, and research studies!
Thank you,
Daniel Abrahamson, L/CPO, abrahams@u.washington.edu
Sara Morgan, L/CPO, sjmorgan@u.washington.edu
Brian Hafner, PhD, bhafner@u.washington.edu
University of Washington Department of Rehabilitation Medicine
Brian Hafner <bhafner@u.washington.edu>
Washington USA - Wednesday, January 18, 2012 at 12:52:36 (GMT)
Four Wheel Electric Cart--KILLER WHEELS!
My Step Dad used this cart about 1/2 dozen times, I know at most it has about 30 miles on it. It cost $2,300.00 new.
The cart is almost spotless and has the following:
Brand new batteries
Folding and swivel seat
Swivel arm rests
Rear view mirror
Headlight
Basket
Adjustable steering column
Battery charger
Front and rear bumper
It runs perfectly.
$925.00 or best offer.
Questions contact,
Bill Nessel 909-423-0562
Bill Nessel <wildbilln@roadrunner.com>
Southern California USA - Monday, December 12, 2011 at 21:42:59 (GMT)
Hello!
I was hoping to join your website and be able to share my story and
hopefully get some info from others who've had similar surgeries.
I was in a major car accident 5 yrs ago...
I was told my foot/leg had to be amputated from the knee down. Some
Doctor came along in the ER after I was scheduled to be medivaced and
said he believed he could save the limb but I'd never have use of it
again.
This made no sense to keep it but not use it. I said to take it if it
needed to go, and only to save it if there was something viable to do
so.
I decided when I woke up I'd deal with.
I woke up still having it and a Doc saying I'd never have use of it...
I proved every Doctor wrong and did walk again and resumed life after a period of time and few more surgeries.
5 yrs later here I am 2 1/2 months into have a trans metatarsal
amputation with a little extra removed due to the degeneration of the
bones and some bones that never healed.
They starting dying and basically were trying to kill me off with them.
They also fused the ankle due to the extensive damage and removed a portion of the fibula.
Our Doctors have basically zero plan for recovery. I am told when pain
eases up I will basically just throw some socks in my shoe and walk
that way.
I feel a proper orthodic device or brace for early walking is crucial.
My concerns being my over all walking gait.
Docs have offered no info whatsoever. Just say let pain guide me.
Well I've been in pain for 5 yrs and I'm walking anyway... But at this
time I'm concerned with doing too much and causing damage to the areas
still healing.
The more time that passes the more off my hips are and everything else from hopping on one leg with a walker.
Search and search the net, and all info is so out dated about TMA and
always seems to be related to Diabetes or Vascular Disease verses
trauma...
And Military hospitals don't want to share with civilians much info...
I found your site and am hoping maybe someone can help.
I can also help others with my experience once I'm healed.
My TMA/ANkle Fusion/Fibula Removal was Sept 19th, 2011...
Still lots of pain but I took myself off all pain meds. Having fun with the withdrawals now, still lol.
Thank you so much for your time and your wonderful website...
Peggy <>PeggyBelmares@gmail.com
USA - Sunday, December 04, 2011 at 15:32:19 (GMT)
I recently moved to Petaluma, CA (August) from CT.
After 40 years of involvement in wheelchair basketball (25 as a player)
I am now coaching a team, the Santa Rosa Blazers, that is recruiting
new players.
We are particularly interested in tall amputees - although we will welcome shortees as well (smile).
Some amputees don't like to be associated with wheelchair sports, they
would rather be skiing or engage in some other sport that they can do
standing up.
This I understand.
But others may find the game of wheelchair basketball to their liking.
It is fast paced and quite aggressive. In fact some of the best players
in the country are amputees, and they get as much enjoyment out of the
sport as do players with spinal cord injuries.
Is there any way the Stumps 'R Us gang can help us get the word out in the North Bay?
Our home base is the Petaluma/Santa Rosa area.
If you would like to reach me by phone I am at 860-614-8351.
I look forward to hearing from you.
Stan Kosloski <stankosloski@att.net>
Petaluma, CA USA - Monday, November 21, 2011 at 22:31:29 (GMT)
I am Lisa Pantone a Casting Director here in Hollywood, CA.
I am casting a PSA (Public Service Announcement)for "Child Obesity".
We are looking for a Female Amputee age 30 to 55.
The women that we book will be shot from the torso down so we will not see her face.
Although she will not be recognizable she will make $800.00 for a few hours shoot. (plus a 15% agency or manager fee)
Please look at all the following info.
Client : GRAF
Director : Sean Koriakin
Producer : Serene Bynam
Prod. Company : Iron Claw
Casting Director Lisa Pantone (me)
Ad Agency: Roberts Communication
Casting Day either 11/29 or 11/30 (in Hollywood)
Call Backs will be 12/5/2011 (in Hollywood)
Shoot will be in Los Angeles on 12/7/2011
The spot will show in Rochester and Monroe County
and on the "Greater Rochester Health Foundation"
web site.
This PSA (Public Service Announcement)is for Child Obesity and it
will show that if little girls eat too much sugar they may get diabetes
and have to get one and or two legs amputated.
We will be showing a girl about 10 yrs old eating lots
of candy and other unhealthy food items then we
see the torso of an amputee women in her wheel chair.
to show what may happen to her health.
This pays $800.00
Please email me at:
lisa@lisapantone.com
Lisa Pantone, Casting Director <lisapantone@gmail.com>
Hollywood, CA USA - Monday, November 21, 2011 at 03:18:25 (GMT)
I am one arm and wonder how one handles the task of sewing
a button on a shirt.
Haven't tackled the task since my wife died.
Perhaps one of your contacts has a suggestion.
Peter Calcagno <pcalcagno3@comcast.net >
USA - Sunday, November 06, 2011 at 03:53:04 (GMT)
Hi Everyone,
I am that daughter of a now very depressed and disgusted man age of now 62.
Approximately 1 year ago now due to PAD my dad had to face the decision of having his leg amputated below the knee.
Prior to the amputation he went through many months of pain and surgery to try and save his leg but inevitably it was taken.
He is diabetic but the physicians have determined that it is not
diabetes that is keeping this small pin sized hole on the stump from
healing.
His diabetes is well controlled.
They have also done blood tests and cultures and have determined it is not a bacteria.
My dad was a very active man before all of this started. He spent many
days working around the house and outside enjoying his retirement.
I was hoping that someone would have any suggestions on what we can do
to finally get this stage over with so he can then begin working on
getting a prosthesis and getting back to a life that he could enjoy.
My dad was never one to sit around and watch tv all day. He so
desperately wants to be on the move again and now he is reaching the
level of depression that it is never going to happen.
I try and be positive, but what the doctors said should be no more then
a couple of months is now getting to be a year. I am open to any and
all suggestions that can help my dad at his young age of 62 get back to
life and be happy again.
Thank you
Chris Zaremba <czaremba0905@hotmail.com>
Knox, Indiana USA - Saturday, October 29, 2011 at 13:14:18 (GMT)
Hi all,
I'm a 49 year old left AK amp for almost 5 years now. I just got a
new socket that I love (great fit, tie-dyed custom finish!) but I'm
having a lot of trouble with my right (organic) knee. I've known this
was coming as I've spent thirty-odd years compensating for problems in
my left leg, the one eventually amputated (electively). My knee has
gotten to the point where it's completely trashed & painful. I'm
suppose to get a new brace. Right now I'm popping ibuprofen and vicodin
to get around.
The doctors don't want to do a knee replacement until I really
need one (??) because I don't have a good knee to lead with during
PT/rehab. I know knee replacement is getting to be a routine op &
the hospitals nearby are excellent. But I've only heard of BK amps who
had knee reps.
Are there any AK amputees out there who've had the other knee
replaced? How long was the recovery period? A lot of wheelchair time?
Could you get around with crutches & prosthesis? Any suggestions?
By the way--I swam across Cayuga Lake (Ithaca NY) last summer in a
hospicare fundraiser called Women Swimmin'. Fabulous event! 314 women
swam, escorted by 170 boaters, and we raised $320K in that single day.
My third swim.
Also--Miriam asked about Gabapentin for phantom pain. I've taken
it since just after my amp and haven't had any side effects. I weaned
myself off it a couple years ago (successfully) but went back on it to
swim because cold water sets off the spikes of pain in my stump (&
in my non-existent leg.)
Great site. Love this community!
Liz Heywood <lheywood2@frontier.com>
Spencer, New York USA - Wednesday, October 26, 2011 at 22:41:29 (GMT)
Urgent Need for two (2) Casualty Role Players
Work starts Wednesday, October 8th, 2011
The National Training Center at Ft. Irwin, CA, is performing
mission critical training exercises to prepare men and women in the U.S
Armed Forces with real life war zone situations.
ATS has an urgent need for two (2) Casualty Role Players who will
be able to act as injured civilians or soldiers during training
exercises to simulate trauma situations.
Per the Government Statement of Work: “Casualty role-players must be amputees with at least one missing limb”
Compensation:
•$8.80 hourly rate plus $3.59 Health and Welfare
•$13.20 for Time and a half pay for overtime (After the first 40 hours)
•$10.80 daily per diem
Other details:
•Rotations require 17 consecutive workdays which include some 12 hour work days.
•Rotations are separated by 20 consecutive days off work.
•Casualty role-players must be amputees with at least one missing limb.
•We are seeking California residence for this opportunity in Barstow, CA.
Please contact Chris Matsumoto if you or anyone you know is interested in this opportunity:
Chris Matsumoto Recruiter
Toll-free: (866) 202-0506 ext. 3164
c.matsumoto@acclaimtechnical.com
Sincerely,
Ed Zapolsky | VP: Recruiting | ATS | Direct: 714.274.4816
Fax: 714.274.6016 | e.zapolsky@acclaimtechnical.com
Ed Zapolsky <zapolsky@acclaimtechnical.com>
USA - Saturday, October 01, 2011 at 22:30:36 (GMT)
Hi,
My name is Anita Lee and I am in Canton, NC USA. I have a 4 year
old boy who because he had deformed feet had a Boyd's amputation (I
think that is right) at almost 2 years old.
He has prosthetics and shoes that fit fine but since my little one has
all of his heel and ankle he can do almost anything without the
prosthetics including run!
He is actually able to get up and down without them easier than with them.
Up until this point we have been able to buy the smallest size robeez
leather soft shoes and he wears them. Now the elastic is starting to be
too tight as his ankle grows.
Does anyone have suggestions for what I can use when he is not wearing his prosthetics?
I really just don't want him to run around barefoot or in his socks all the time. Suggestions would be appreciated.
Thank you!
Anita Lee <lee784@hotmail.com>
Canton, NC USA - Wednesday, September 28, 2011 at 23:04:35 (GMT)
Dear Leslie,
You did the right thing. The ERTL Procedure will get you “unstuck”!
Thank you for sharing your experience with the rest of the amputee community.
You helped a lot of people today.
Good luck in your healing!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, September 25, 2011 at 13:26:44 (GMT)
HI,
I had elected to get my right leg amputated because of numerous
surgeries due to my having Cerebral Palsy. I have moved around a lot in
my life trying to find where I fit in so to speak and unfortunately
every new city I moved to I also had to find a new ortho surgeon. I
can't count how many times I heard from a doctor that they were a CP
specialist, and they could make my life so much easier if I would just
have the surgery they recommended.
It led to me having 54 surgeries on my legs before the amputation.
I had my leg amputated August 13th 2010 (Friday the 13th of all days).
Everything was going great after I had found the right place to get my
prosthetics. My (training) prosthetic
was made wrong for my leg and I was never able to walk on it. I could
barely wear it without pain.(made from the first place) After I got my
second leg, I went thru about 6 months of therapy and was doing great
with walking and learning how to get back into the swing of things.
I am married with 2 daughters who are very active in sports and their
community. So having me unable to get back to what they were used to
was unrealistic.
In April this year I started having increasing pain in my stump,
and was unable to wear my leg anymore no matter how many socks I added.
I was recommended to have the ERTL procedure done.
I had it done August 1st 2011, so I am still healing, and from what I am reading I am feeling a little more optimistic.
I'm having issues with the healing on the original scar, so far we have been packing it twice a day since my stitches came out.
In the mean time I am fighting depression, and increasing anxiety. I
feel like life is moving forward and I am stuck in the same place all
the time. I just want to get back into being a mother and a wife.
Thank you to everyone that has had the ERTL procedure done and have
reassured me that I made the right decision. Dr. Ertl is one of the
best, and totally understanding as to how you feel.
Even though I am having a few complications with the healing I would recommend him & his surgical procedure to anyone.
Leslie Novak <Lmsturgill@aol.com >
Gobles, Michigan USA - Sunday, September 25, 2011 at 13:19:17 (GMT)
Subject: Side effects of Gabapentin and Lyrica, plus good ideas for socket cushioning? - for my Mom!
I'm so glad to have found this wonderful group!
Am writing for my Mom, a beautiful, youthful 82-year old amputee since
1985, when a car careened onto the sidewalk where she and my Dad were
walking.
She lost both legs - one AK and one BK, then got a great pair of great prosthetics.
All she wants is to stay walking.
The latest pair of legs is now about 9 years old, very worn out and
almost unwearable; my Dad passed away in April after a long illness,
and it's been hard to find a prosthetist for an older double amputee
with limb shrinkage and bony prominences.
We finally found one, but it takes time to make new legs and she is having a lot of pain, meanwhile.
Since she has been an amputee for a long time, her limbs have naturally
gotten thinner toward the bottoms (atrophied). Mom doesn't have muscle
there anymore and is basically skin and bones, causing pressure in the
old sockets and pain on walking.
First, I am wondering if anyone knows a good socket-cushioning material
- we've tried everything from lambswool to cut-up Tempur-Pedic foam; is
there a product made for this? Or does anyone have a good homemade
idea?? I've thought of micro-bead pillows, or Sensus memory foam (don't
know how to get it!), or some kind of injectable foam that could be put
on the inside of the socket to conform to the shape of my Mom's leg.
Second, Mom's now having very bad nerve pain and phantom pains
every day. They are often worse at night and prevent her from sleeping.
We are consulting a doctor, but she is afraid of anything more than
Tylenol ... Mom experienced some atrial fibrillation during her
lifetime (probably caused by stress), and she is afraid of side effects
like nausea that could set it off again, or of getting too sleepy and
possibly falling.
I've heard that Gabapentin (Neurontin) and Lyrica are good for
these pains, but could make her nauseous or very dizzy? Do Gabapentin
and Lyrica really help with nerve pain and phantom pains? Is one better
than the other? What are the side effects - do they ALWAYS occur, and
do they wear off? Could she take PART of a dose, since Mom weighs only
about 80 lbs.?
Any other medicine you like?
Thanks for your advice - I am desperate to keep Mom on her feet!
Most sincerely,
Miriam Danar <mimmimac@aol.com>
New York, NY USA - Tuesday, September 06, 2011 at 17:43:54 (GMT)
Heterotopic Ossification doctor referral needed
Hi all my name is Steve. My brother has a below the knee amputation.
Heterotopic Ossification is setting in. The goal is to treat it in
order to prevent an above the knee amputation.
Do you have a referral to a doctor who is an expert in this area and that could treat him?
The ones that he has seen have said that they have not seen a situation like his.
Recommendations are greatly appreciated.
Thank you
Steve Reckers <stevereckers@sbcglobal.net>
Fair Oakes, CA USA - Saturday, August 27, 2011 at 16:52:22 (GMT)
This Is A Gold Award Project O&P Drive
My name is Lauren McCutcheon and I am an Ambassador for Girl Scout Troop 311.
I am currently working on my Gold Award project which
involves an O&P drive for the amputee community in Haiti.
I could really use your help.
Could you please send this following message to all of your members?
Thank you.
Dear Stumps R Us Members,
My name is Lauren McCutcheon and I am an Ambassador for Girl Scout
Troop 311. I am currently working on my Gold Award project which
involves an O&P drive for the amputee community in Haiti.
After the drastic Haitian earthquake in early 2010, many were left
limbless and home bound. Even though the earthquake was well over a
year ago, this community still faces hardships. There are certain
things that this community needs that can be provided as hand me downs,
like O&P products, as well as components and parts needed for
repair.
Throughout the month of September, we are asking that all amputees
and their families take a look in your closets, garages, or storage
facilities for gently used O&P products.
Contact your O&P service provider to see if they are a drop off location for the drive.
With gravel, dirt, and rubble for streets, transportation is limited to
walking (it’s impossible to use a wheel chair in Haiti).
With an act of kindness and a spare leg you can make the world a better place for the struggling amputee community of Haiti.
For more information you may contact me at
lauren.k.mccutcheon@gmail.com.
Thank you.
Lauren McCutcheon <lauren.k.mccutcheon@gmail.com>
Haiti, USA - Friday, August 26, 2011 at 01:26:55 (GMT)
Grandma's Robot Leg
My name is Julia and I was in a motorcycle accident on my Harley last
year on Sept. 10, I am sure you have heard it all before, I knew that
my life would never be the same I could only think about what I could
not do.
I am happy to say that I am back at work my life although “different”
is better….which is kind of weird. Everywhere I go, to the store, a
picnic, to my grandsons day care the children flock to me.
They think my leg is AWESOME, and they all line up to “push my
button” and watch my leg come off, their questions are the best ever.
Life is good I tell everyone that I do not like children, but I guess I really do.
Thanks Dan for doing what you do
Julia Santos-Coy <Julia@tahoesafealliance.org>
Incline Village, NY USA - Wednesday, August 24, 2011 at 22:46:38 (GMT)
Hi everybody,My name is Michelle George.
I am a geeky gimpy Detroit DJ mama with a whole lotta heart and a slice of attitude! I am a 31 year old below the elbow amputee.
I lost my right hand and 3" of my right arm 7 years ago.
I was married at the time and my husband was in the hospital being
treated for cancer they finally got his pain to an acceptable level and
he fell asleep, it was at this point I made a decision that would
change my life forever;
I went for a walk to clear my head.
A walk seems harmless enough and a walk in a field of wildflowers seems excruciatingly harmless but it wasn't.
There was a dip in the field that I didn't see because the grass had
been mowed and it had grown to look even, my foot hit the hole my ankle
twisted and I fell. When I stood back up to dust myself off there was a
rusty nail sticking out of my right wrist. I pulled the nail out myself
and there wasn't but a drip of blood so I thought it wasn't a big deal,
boy was I wrong. Within a half hour I had to take myself to the
emergency room because my hand began to ache.
They transferred me to a hospital that was 1/2 hour away with
specialists and in that time my hand had already started to die. The
nail had nicked the artery in my wrist allowing bacteria to enter
directly into my blood stream I developed a staph infection with MRSA
and after 12 surgeries in 10 days and being put into a medically
induced coma because the pain was so severe they amputated.
The only time I was awake during my stay was after my second surgery
when I was awakened up to be told that my husband had passed away.
Today I am a lot happier I have a beautiful little boy who is 4 and a
wonderful husband who loves me just the way I am. Currently I am trying
to get into one of the hand transplant programs more than anything I
just want to feel whole again.
I thank all of you for sharing your stories they gave me hope and have touched my heart.
Please pray for my acceptance into the hand transplant program.
More than anything all I want is to be able to hold my husband and sons
hand without having to choose one over the other.
XoXo,
Meshelly George
Http://indienation.fm
Twitter: Meshelly420
Google+ Meshelly George
Google Voice: 734-288-8457
Meshelly@Indienation.fm
iPhone App: http://app.cat/indienationfm=
Michelle George <meshelly@indienation.fm>
USA - Wednesday, August 24, 2011 at 13:35:09 (GMT)
My name is Dale Huether, I live in Fargo ND.
I lost my left leg last year in Sept. At first I thought I was
ready for it but as time went on I got more depressed and could not
handle the loss of my leg.
I am a very active person who loves the great outdoors. Since I lost my
leg I have not been able to do a whole lot. It has taken almost a year
to heal up, I feel as if my life is getting put on hold for too long.
I want to ride a motorcycle so bad.
I hope my life will get back to normal but I know that is not going to
be the case there will always be something different about me and some
people will have a fun reaction to it.
Sincerely
Dale Huether <saber_m80@live.com>
Fargo, ND USA - Monday, August 22, 2011 at 13:03:53 (GMT)
Left BKA
I was wondering if any other amputee has experienced excessive sweating
underneath their liner to the point of water blisters?
Even if I am sitting in dialysis I can feel the sweat dripping. This is
a new problem for me but it has basically put me in a wheelchair.
I have tried regular deoderant and clinical strength
deoderant...nothing is working. The prosthetist at Hangers is just
outta school and is of no help right now.
I have a proprio foot and a V-Hold vaccuum socket. I have 6 kids
and I really need to get out of wheelchair. Any thoughts would be
appreciated.
Please email responses to
neece@mail2world.com
Thanks so much....I have been an amputee since Feb 08, 2011
Geneece Pulley <neece@mail2world.com>
Princeville, Illinois USA - Wednesday, August 17, 2011 at 18:34:46 (GMT)
Request for Support
Hi,
We are looking to get in touch with amputees.
We are a company that provides services for the US Armed Forces during rotational exercises and training scenarios.
Part of the requirements are so called Casualty Role Players, that will
act in support of special scenarios as victims of bomb blasts or
accidents, etc.
We are currently looking to extend our database and would be more than happy to provide job opportunities for amputees.
Interested - and qualified - people can submit their applications via email:
jobs@sst-services.com
or via our website:
http://www.sst-services.com/english.aspx
Best Regards,
Sven Kuckei (Director of Operations)
________________________________________
email: sk@sst-services.com
Sven Kuckei <sk@sst-services.com>
Washington, D.C. USA - Tuesday, August 16, 2011 at 21:35:13 (GMT)
Hi
I was hoping to post on the forum regarding a fishing reel for
freshwater that has caught the attention of folks with physical
challenges, including limb loss.
It's the Powerfishn Hybrid Reel.
It gives you a choice between manual or automatic line retrieval (cranking). -
Here is the Web site with a video.
http://powerfishn.com
As far as a post, I was thinking:"Get back out and fish! This
freshwater spinning reel gives you a choice - manual or automatic
crank! Watch the video here:
http://powerfishn.com"
Thank you!
Power Fishn <powerfishnhybridreel@gmail.com>
USA - Tuesday, August 16, 2011 at 12:10:04 (GMT)
Hello!
My husband has a transmetatarsal amputation of his right foot from an evil lawnmower when he was 4. He's now 39.
Despite living a very active life with his injury, he is now developing chronic pain in his "normal" foot, hips and back.
He is finally (!!) considering an orthotic and believes that something
such as a carbon fiber base with toe filler might be the answer (all of
his shoes tend to fold, applying pressure on his stump, and his gait is
severely affected).
My questions are: has anyone used something similar? If so, how has it
affected daily activities such as walking, as well as sports such as
hiking/biking?
Also, we have no idea where to begin looking for someone who knows what
they're doing (we know this will be costly, and without insurance, it's
important that we get it right the first time). Any good
recommendations on the west coast?
Thank you for any help you can provide!
Marianne S. <wanderingmours@gmail.com >
Reno, Nevada USA - Friday, August 12, 2011 at 12:47:06 (GMT)
Movie Help Needed
Hello, I hope this e-mail finds you well.
My name is Christopher Bell and I am an established filmmaker and
film critic. This fall I will be directing my first feature film, a
fiction/documentary hybrid focused on the economy in America.
In the script I wrote, I have various types of people that are vastly
under-served by Hollywood and cinema in general, and included in that
group are American amputees.
A large part of America is overlooked and generally we see the same
type of person represented in movies constantly. I want to change that.
Everyone is important and everyone deserves to be shown.
I put an ad on craigs list looking for an amputee actor (more
specifically, a male with one arm, no acting experience necessary) but
I haven't gotten any replies. I was hoping that you could help me in
any way to find somebody or at least get the word out there. It would
be a paid position for a shoot in New Jersey, plus, no acting
experience is necessary (I'm going for something real, not theatrical
or fabricated).
I'm not sure how to proceed on this one, so any help (even just a nudge in the right direction) would be greatly appreciated.
If you have any questions I would be happy to answer them, and the
websites below showcase both my film work (short films) and film
criticism (reviews, news stories).
Thanks for your time.
Critic/Columnist
The Playlist/IndieWIRE
http://blogs.indiewire.com/theplaylist/
(917)-843-4567
Filmmaker
www.surprisepartyfilm.com
www.karioutfilms.org
Pilgrimage short film - http://bit.ly/bJVeAi
Christopher Bell <christopherjasonbell@gmail.com>
USA - Friday, August 12, 2011 at 12:37:51 (GMT)
I
am a 57 year old woman. I had my right leg amputated below the knee 7
weeks ago. The reason for the surgery is rather unusual.
I have a condition called erythromelalgia, which causes my feet to get
very hot, red and swollen. The only relief is cooling them with a fan
and a very cool house.
My case is quite extreme in that I went from occasional flare-ups to
constantly in a "flared" state. My feet were so swollen I couldn't wear
any kind of shoes and had ulcers/sores all over them...top and bottom.
I literally had no quality of life as I could not go anywhere outside the house with the exception of doctors appointments.
There is no known cure, however there are multiple treatments that have helped different patients with EM.
Unfortunately for me, none of them worked on my feet. The frustrating
thing is that I am perfectly healthy in every way aside from this.
It started about 2 1/2 years ago and no one knows why. I have been to
the Mayo clinic in Arizona and have also been seen by several doctors
at Stanford. I finally made the decision to have my legs amputated to
try to get some semblance of a life back, however my surgeon refused to
do them both at the same time.
At first I was happy that we did it this way because surprisingly my
left foot actually started to improve! I was able to use a walker and
even crutches and didn't need to have the room so cold, although I
still need the fan.
But as time goes by my foot is getting worse again and it seems to be
moving up my leg. I don't know if it's overuse...having to bear all my
weight all the time, but it is very discouraging. I was hoping to at
least have gotten fitted for the prosthesis for my right leg before
losing the left, but I still have not healed enough to start that
process.
I also have a lot of phantom pain, which we were expecting due to the chronic pain I had prior to the surgery.
It is all very scary and overwhelming.
Have you ever met anyone who has experienced anything like what I am
going through? I would really appreciate any advice or support.
I have a very wonderful husband and two great sons, but they are as overwhelmed by all this as I am. Any help would be great.
Thank you!
Lynn Olsen <lolococo@comcast.>
San Jose, CA USA - Tuesday, August 09, 2011 at 03:24:11 (GMT)
Just wanting to help
I have had a BKA since 1986 after a motorcycle accident.
I am now 43, but have struggled for the past 24 years with my weight.
The past several years have been the worst, including back, hip, and
knee pain.
In addition, I started having trouble with my prosthesis fitting, doing
any activity, Even getting up and out of a chair or my car.
Moreover, I couldn’t even walk up stairs anymore, I had to crawl.
I decided to get my health under control and lost the weight.
I have felt amazing ever since I got my weight off!
I know how that extra weight can affect an amputees life! I just wanted
to offer to help others with their weight problems, so that they can
feel better again, too!
It is hard enough walking around with an artificial limb, then try to add extra weight on board!!
I would love to help any/all that are in need!
My best
Kristen Heffern <kristenjheffern@gmail.com>
Decorah, Iowa USA - Wednesday, August 03, 2011 at 13:11:20 (GMT)
One-legged swimmer
Hi Dan & all in the Guestbook--
I'm an AK since 2007, elective, after the fused knee I limped on had caused deterioration to the rest of my body.
I posted here in 2006 when I was talking to doctors about my inoperable
knee. I had untreated osteomyelitis at thirteen (and fourteen and
fifteen) due to the religious beliefs of my family.
The support and education I found from all you fabulous amps made all
the difference. It turned a rough transition into a victory.
I'm 49 & live near Ithaca NY, the Finger Lakes region. Our
local Hospicare & Palliative Services holds an annual fundraising
swim a mile across Cayuga Lake every August: WOMEN SWIMMIN' FOR
HOSPICARE.
I got involved a year after my amputation.
This year will be my third crossing. I train in my pond for a few
months & go up to the lake on the day, get someone to keep track of
my crutches & leap into the water with everyone. . . It's
wonderful.
I'm the only amp so far, though I believe there is a woman or two with a wheelchair.
Is it OK to post a link to my page on their website in case anyone wants to sponsor me? It's a terrific event.
The hospice raises several hundred thousand dollars and covers most if not all of their annual budget.
https://secure1.pageplanet.com/womenswimmin/homepage.mgi?s=sv4keha2epqd146
The photo is a little distorted but it's me in the water with my
foot sticking up and my prosthesis observing me from shore in shades
and a hat. . .
As for the phantom pain discussion--I found I could gradually go
off my ph.p. meds after a couple years BUT when I started swimming, the
cold water set it off again. So I take them during the warm weather.
We're all in this together.
Dan--this website is a lifesaver.
Thanks for all you do.
Liz Heywood <lheywood2@frontier.com>
Ithaca, NY USA - Wednesday, July 20, 2011 at 23:20:54 (GMT)
My name is Elizabeth.
On June 27th, 2010 my daughter and I were walking into a store in
Philadelphia. I said to her, "Look the carts are all out front. I said
I would get one".
She said (she is 15), "No mom there will be carts inside and then she said I'll hold the door for you".
I went to get the cart.
When I turned around my 15 year old girl was holding the door for me.
A women on her cell phone, yes I said cell phone, was driving & talking as she pulled into a disabled parking spot.
She slammed on the gas by mistake and hit my daughter at 40 mph.
She broke my little girl's pelvis and everything in her right leg and tail bone.
We had to take her left leg after 7 hours of surgery.
She was airlifted to the University of Pennsylvania then after 20
more surgeries she went to Children's Hospital of Philadelphia.
She was in a pelvis bar and her right leg was in an xfixater.
For 18 weeks she was in a coma.
When she woke up it was the hardest thing I ever had to say but she is walking!
Thank god for orthlogix. Our lives changed in a nano second because someone had to make a cell phone call.
We almost lost her many times but the first time she took a step
with the prosthetic it was like the first time she walked as a baby.
She also had many skin graphs.
Thank you for listening!
Elizabeth <tinkergee417@yahoo.com>
Philadelphia, PA USA - Tuesday, July 12, 2011 at 03:07:47 (GMT)
Hilda AKA Roxie in Illinois
Congratulations on your decision to submit to the ERTL Procedure. Best decision you ever made.
The ERTL Procedure is the only operation I know of that properly
prepares an amputee's stump for a comfortable, long lasting, well
fitted prosthesis.
If your artificial limb is painful to wear it is simply not fitted properly.
Now you have to find a Certified Prosthetis in Illinois to properly fit you.
It is obvious to me that your present Prosthetist may be a "good
guy" but obviously he does not know how to fit your Prosthetic device
so that it feels as comfortable as an old shoe or boot.
Good luck in your search!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, June 26, 2011 at 00:48:00 (GMT)
Hi everyone.
It is good to know there are people out there willing to support one another.
I have a question.
24 years ago I went through a lot of surgeries before finally having my amputation because of a work related accident.
What a nightmare getting hurt at work was.
7 operations later the Doctors said I had developed osteomyolytis and septicemia (fancy names for bone and blood infection).
Nothing else could be done so they took right leg off below my knee.
For years I suffered from severe R.S.D. including another type of nerve pain caused by being burned by a phenol injection.
My prosthesist is a great guy and has tried to do his best for me
over the years. He finally heard about the Ertl procedure and in Early
March 2010, I went through my first Ertl procedure.
The Doctor found the bone had broken off on the bottom and my skin had
become very thin just under the tibia. I had several neuromas that had
actually wrapped around the bone and loads of scar tissue.
My surgery turned out to be extensive. However I learned the Doctor was
still able to create the (ERTL Procedure) bone bridge; I was so
excited.
Things started out well but suddenly I developed a Bursa.
Also pain increased and a marble like solid developed on the side
bottom down by my bone bridge. Infection was also showing up on scans.
About 11 weeks ago I went through another procedure. The Dr. had to
remove another neuroma and cyst and clean up some scar tissue.
My sadness is that I have been through about 4 Prosthetic fittings and the leg I am wearing is incredibly painful.
My hope and the reason for all the time and pain was so that I could wear a prosthesis without so much pain.
Has anyone been through something like this? Maybe I am being a little impatient. The bridge was solid, Thank God!
Living in Illinois and hoping someone has an answer!
Also I wear the suction system.
Much Thanks,
Hilda
Roxie Carp <broomhilda52@live.com>
Illinois USA - Sunday, June 26, 2011 at 00:38:25 (GMT)
Jen Cole in New Orleans,
Congratulations on your decision to consult with Dr. ERTL in Oklahoma City. He is the best.
Your way out of RSD pain is almost completely assured with the ERTL Procedure.
>BR>
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, June 23, 2011 at 21:28:00 (GMT)
Hi,
I have posted in the past.
I am 27 years old. When i was 23 I crushed my foot in car accident. I had a fusion done and have now developed RSD.
Before I even knew I had RSD I wanted my foot gone. I am scheduled to
see Dr. Ertl on July 6 in Oklahoma City for a consultation.
I am extremely nervous because every doctor I have talked to has advised against me having the procedure done since I have RSD.
It is becoming more difficult for me to work and I want to start a
family soon. I cant imagine raising kids in the amount of pain I am in
now.
I have viewed this website for the last couple of years looking for information and it has been very helpful.
Thank you
Jenn Cole <jennifer.cole@selu.edu>
New Orleans, LA USA - Thursday, June 23, 2011 at 21:24:07 (GMT)
6/20/2011
Dear Alma in Los Angeles,
In my experience as a B/K amputee I seldom experience Phantom Pain.
I (and this is true for ALL amputees) experience Phantom Feeling. That
is, I know where the lower leg & foot is because the brain refuses
to admit any loss therefore I can feel toes that are no longer there.
Without Phantom Feeling we would not be able to properly use a
prosthetic device. The Phantom Feeling allows us to strike the pavement
with our foot without ever looking down to see the action taking place.
Phantom Pain is caused by trauma to the severed nerve endings in
the act of amputation. The ERTL Surgical Procedure practically
guarentees you will never experience Phantom Pain because the severed
nerves & tendons are buried in soft tissue protecting them from
blunt trauma.
Also bone is harvested to create a bone bridge eliminating the lower bone's chopstick effect.
Phantom Pain can be controlled with:
1) Self-Hypnosis
2) Medication
3) Moxie sticks (Chinese incense)
4) Application of heat
I control mine with Self Hypnosis. Self-Hypnosis is easy to learn and is always there when you need it.
GOOGLE the Internet to buy a self-hypnosis learning CD if you want to try it.
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, June 21, 2011 at 00:07:57 (GMT)
Hi Everyone,
I have been a left B/K amputee since 2003.
Thankfully I have not had a lot of phantom limb pain. I have some pain
along with the usual sensations but it hasn't been a problem until now.
Recently the pain has become more frequent and more intense.
The people I have talked to say that six months after the amputation, the phantom pain stays about the same from that point on.
Has anyone here experienced a significant increase or decrease in pain after several years?
I've never been treated for it before, but I may want to start now.
Any help/advice you can give will be greatly appreciated.
Thanks.
Alma Marinez <ajmarinez@yahoo.com>
Los Angeles, CA USA - Monday, June 20, 2011 at 23:41:30 (GMT)
This is a prosthetic question from a therapist
I found your web site Stumps R Us while searching for answers to the following question/issue...
I am working with a young man in a group home setting who was born with
Cerebral Palsy - he was involved in an accident a few years ago that
ultimately led to an above the knee amputation.
He has some challenges with memory and fine motor control as a result
of his Cerebral Palsy. We are trying to help him learn how to use his
prosthesis and are having some challenges with figuring toileting
issues.
Do you know of anyone who I can contact about strategies, specifically
having to do with the management of undergarments and the pelvic belt
of an AK prosthesis to maximize modesty while learning how to put on a
new prosthesis and perform toileting with maximal independence and
safety?
I would appreciate any suggestions or contacts you might have
Thank you
Abby <abby>
USA - Monday, June 20, 2011 at 14:22:23 (GMT)
Subject: Prosthetic foot manufacturer.
A while back, I found a foot developer who had a foot that resembled a Nautilus. Does anyone know the name of the company?
I believe they are located in Southern California.
Any help will be greatly appreciated.
Jose Suarez <jhsuareze@gmail.com>
USA - Friday, June 17, 2011 at 20:51:34 (GMT)
I've
been reading this Stumps R Us web site since before my decision to have
an amputation and many questions have been answered.
I have my first appointment at the amputee clinic July 13th and I would
like some input as to how many different kinds of prothesis there are
for below the knee amputees as well as how well they fit and work.
I know everyone is different and what works for one might not be right
for someone else. I would just like to know what there is are out there
before my appt. and maybe know what to expect.
Thank you!
Barnes <michellesmb63@yahoo.com>
Stockton, CA USA - Sunday, June 12, 2011 at 01:28:31 (GMT)
I have been reading your website for the last 6 ½ years or so since I
became a RAK due to a work injury. I have had a C-leg for most of that
time and am very happy with it, but it is starting to act up.
I will be having it looked at to see if it can be repaired, but if
it needs replacement, I am looking for opinions. I would be happy to
have another, but am also considering the Rheo knee, or any other
similar options.
Has anyone out there had both the C-leg and Rheo knee?
How do they compare?
My prosthetist really likes the way the Rheo has helped other
clients and that is what I will probably get, I just would like some
outside opinions.
Thank you!
Richard Morgan <Richard.Morgan@steelscape.com>
Longview, WA USA - Thursday, June 02, 2011 at 16:55:36 (GMT)
I
am a 59 year old male who had my left lower leg amputated in November
2008 after an "over night stint" operation went horribly wrong.
I ended up in the hospital for 19 days and at the end I walked out a BK amputee.
It took five more amputations in the following ten months to get to where I am today, an AK amputee.
I am an ex-Marine from the Vietnam era and I have felt that I have been in control of all situations 'till Now.
I still work, but I have been put in an office situation.
This is the first time I have sort of publicly said any thing to any
one. I really don't know what to do....
I have never talked to another amputee in all this time and I have
never really opened up to people other than in a joking mode.
I'm not really sure who you are but it seems that you have a lot of folks relating a lot of personal information to you.
I never let my guard down. I am a very funny guy, and I love nothing
better than making fun of situations and even myself.....but there are
times I totaly feel like I'm a freak and I become totaly out of my
comfort zone.
It's rare but it's there.
Because of the non-activity I have become HEAVY. My doctor says it's in the obese range.
I have out growen my last two prosthetic legs and now use my crutches
to get around. (Thank God I have the upper body strength)
At home I'm in the wheel chair. I can only access three doors, the
entrance, back door and my bedroom. I don't mind hopping to the toilet
or into ther other rooms but this month I turn 60, and I won't be young
forever.
Maybe by contacting you I can find a group of people to relate to.
I really feel for my young Marine Brothers who are comming back with so
many limbs missing because of their age. They will never experiance the
oppertunities
of life like their counterparts because of their handycap.
I, in turn had it happen at a later stage in life and in that sense I do consider myself lucky.
I hope you can get the jist of what kind of guy I am and point me in the right direction.
I live in Northern California, West of Sacramento in the upper Sierra foothills on the way to Lake Tahoe
in the Hwy. 50 Corridor.
I think it's time for me to reach out.
I have not been sucsessfull in seeking out my counter parts but
hopefully your fan base can point me to a local amputee group that I
can join and relate to.
Thank You!
Eric <parsley5@comcast.net>
Sacramento, CA USA - Saturday, April 09, 2011 at 15:01:02 (GMT)
My son is an amputee from below the knee. He had the procedure done July 26, 2010.
He is 37yrs. old, has 2 small children and a life partner.
Bad enough all this has happened, he fell off the back of a tractor
trailer truck broke his ankle and leg, got a bone infection and that
lead to the amputation after 4 months of nothing but bad medical care.
Any way he was working for a temp agency and now gets workmas comp, $400.00 a week to live on for a family of 4.
He has applied for social security disability and has been turned down
twice. All he is looking for is some help till he gets back to work.
He has another surgery to go thru in June, so it's going to be a while.
He now is going to consult with a lawyer that just deals with these
types of cases but does anyone else have any other information or
avenue that he can try?
My self and my husband, my ex-husband and daughter have been
helping out as much as we can but he's still coming up short, and
falling into a depression. I'm afraid he's not going to be able to pull
out of.
I would appreciate any ideas or thought anyone out there has.
Thank You
JJ Gyure <JJGyure@aol.com >
USA - Monday, March 28, 2011 at 17:14:11 (GMT)
Hi, My name is Jenn.
I have made a post in the past. I am not yet an amputee but considering
an elective amputation. I have had this thought for last few years, but
I am to scared to commit.
I think about it on a daily basis.
I had a car accident that destroyed my foot and left me with a useless
limb. I was forced to take a lower paying job after I was hurt to
accommodate my foot.
I have been told by my doctors not to switch my insurance, because if I
decide to have the elective amputation it will not be covered under my
new policy because its pre existing.
I am only maintaining this current job to cover my existing health plan.
Does anyone know someone I could talk to about this issue I have?
Thanks!
My soon to be husband has health coverage considered being put on his
plan but no where on his plan does it mention prosthetic coverage. I am
assuming if its not listed its not covered.
Very frustrating!
Jennifer Cole <jennifer.cole@selu.edu>
USA - Wednesday, March 23, 2011 at 03:02:53 (GMT)
Jennifer Jones...
In what city, state country are you located?
What is it you want?
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, March 17, 2011 at 12:51:36 (GMT)
Hi.
My name is Jennifer Jones and I am a LBKA.
I had the amputation on Feb. 26, 2009 after spending 4 months with my leg in a vac pump
Jennifer Jones <jenuwine01@gmail.com>
USA - Thursday, March 17, 2011 at 12:49:14 (GMT)
My name is Danny Garcia. I am a 49yr male.
5 months ago I was in the E.R. having bka on both legs from diabetes.
In two months after loss of bka's I was walking with a walker. Quite good for first time walking.
Therapy and the prosthetics were the best.
I have been experancing as a new life to being able to get back most of my life.
I am to this day living at my own apt by myself. I have been blessed to
be walkin with out any adaptive equipment. A cane is carried just in
case I get too tired...The therapy dept is in awe at how well I have
adapted to a new world of bein GIMPY.
The rehab facility is doing a sucsess story on me. When I wear pants people have no clue that I am walking with asstistance.
Danny Garcia <garcia.dannyj@gmail.com>
USA - Tuesday, March 08, 2011 at 19:28:26 (GMT)
Dan,
Hi! I was in touch back in 2009 and you helped me locate some
amputees for a study. Well, I’m excited to tell you that it’s FINALLY
time to announce the launch of The One Handed World Project.
InsightFarm and my company (Bellomy Research) have partnered together
to help educate manufacturers on how to make products and packages
easier to use by speaking with and learning from those who live
elegantly and efficiently with only one hand.
Here is the video about our project:
http://www.youtube.com/watchv=bDqCUK0ZfDU&feature=player_embedded
If you are willing, I’d appreciate your help in forwarding the recruit
information below along withb any friends living with one hand/arm or
posting the link on the Amputee News.
Just as a heads up, we are looking to recruit panelists between the ages of 18-69 who live in the US or Canada.
Below is a link to a short qualification survey to join in the research and discussion.
We are creating a panel to bounce ideas off those living with one
hand/arm and to hear what they have to say in an open forum. Members
will not only get to meet other people who are also living with one arm
from across North America, but will have a direct impact on the future
of products and packages!
http://survey.bellomyonline.com/start.asp?SID=10408&FLAG=10
Please let me know if you have any questions or concerns! Thank you in advance for any help!
Blythe Gridley
Social Research Account Manager
Bellomy Research
175 Sunnynoll Court
Winston-Salem, NC 27106
BellomyResearch.com
336-721-1140
800-443-7344
Fax: 336-356-1544
Blythe Gridley <bgridley@bellomyresearch.com>
USA - Friday, January 21, 2011 at 21:16:00 (GMT)
Lee Neal in Reno, Nevada
Good decision...deciding to amputate rather than letting the Docs experiment with future surgeries.
I faced the same dilemma more than 50 years ago after a motorcycle accident (my fault).
Rather than face multiple surgeries to save a shattered leg I too elected a below the knee amputation.
I never regretted the decision.
Today I walk normally, am a current Instrument Flight Instructor
& remain happily married to the same woman for the last 30 years.
The best of luck in your recovery!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, November 30, 2010 at 21:54:39 (GMT)
Well I am new to all this.
On Friday December 3 at 7:00 am I will be going into the Renow
medical center in Reno Nevada to have a below the knee amputation.
Well let me introduce myself.
My name is Lee Neal and before January 16, 2010 I was just a normal
hard working plumber and a proud husband ,father and an avid motorcycle
rider.
On January 10 2010 I was riding a 2004 Harley 883 sportster home that I had only owned for about a week.
As I was heading home a young 20 year old man made a ilegal left turn
in front of me and I planted my bike in the drivers wheel well of his
2007 Dodge charger at 50 mph.
I shattered my leg in over ten places.
After 4 surgeries and 11 months of recovery hoping that my leg
would heal and get me back to work, I found a new Doctor in Reno,
Nevada after moving back from Hewitt, Texas.
My new doc showed me that my leg was not healing the way it should and
gave me the choice of 6-8 months of recovery and 3-4 more surgeries or
amputation.
I picked to cut it off so I can get back to work and get on with my life.
Lee Neal <nealrecovery@yahoo.com>
Reno, Nevada USA - Tuesday, November 30, 2010 at 21:47:46 (GMT)
CASTING CALL
Hi,
You were referred to me as someone I should contact regarding our
new series "AMP'D UP", I have included all of the CASTING information
in this email
If you have any questions, please feel free to respond to me via email
and/or my phone number listed in my signature for more information.
We are looking forward to finding inspirational stories.
EMMY AWARD WINNING PRODUCTION COMPANY IS CASTING AMPUTEES FOR A NEW DOCU-SERIES ON A MAJOR CABLE NETWORK:
AMP'D UP
We want to tell the stories of charismatic, interesting individuals,
who in spite of being amputees, live big, bold adventurous lives and
defy stereotypes.
If you’re a new or experienced amputee, and/or know of someone who is, casting would love to hear about it.
Please send an email to:
djfcasting@yahoo.com
In the email please include the following:
• your full name (including age) • city and state where you live •
contact information (best number where you can be reached) • how long
you've been an amputee/what is your story behind it • biggest obstacles
you've overcome • tell us about yourself, your family, what life is
like and how you cope/manage routine day to day activities that most
take for granted • please include a recent photo
D.J. Feldman
Casting Director
"Mother Truckers" / "AMP'd UP"
World Of Wonder Productions
323.603.6300 ext 296
D.J. Feldman <djfcasting@yahoo.com>
USA - Monday, November 15, 2010 at 22:08:47 (GMT)
Dick Howe Yakima, Wa
The fact that you're aware that your stump is changing is huge.
I start my day in only my liner. At 9am I add 5 ply. At 2pm I add 3 more ply and at 5pm I add a additional 3 ply.
At the end of a long active day I went from 0-11 ply only to start it all over the next day.
Sock management is half the battle and just as important as wearing the prosthetic itself.
Depending on where you are feeling pain you're probably bottoming out if the pain is on the bottom of the stump.
Also this may or may not pertain to you but if you are diabetic or
on dialysis, the day you are casted and measured for a prosthetic will
significantly play a role in the overall fit of your prosthesis if that
was casted on your off day of dialysis.
Feel free to contact me directly or indirectly thru this site
Joe Kennedy -Saint Petersburg Florida --RBKA --
Saint Petersburg, Florida USA
Saint Petersburg, Florida USA - Saturday, November 13, 2010 at 15:28:26 (GMT)
My
name is Nancy Pitchford-Zhe. I am Founder/Director of Heads Up Therapy
On Horseback in Santa Clarita. (Valley of four towns; Valencia, Saugus,
Canyon Country, and Newhall.
I had a call the other day from a gentleman who is President of the
Valencia Chapter, Club for Amputees. He was supposed to have called me
back but has not yet done so.
I was in a meeting so did not get a chance to talk to him or get his number.
All I know is that he is president of a Valencia, Ca Chapter Club for
Amputees. HE wanted to know if his members could come to ranch and ride
horses.
My answer was yes.
Anyway I have some opportunities for the club as far as FREE
introductory rides, and a FREE lecture that I am trying to set up which
is a therapeutic technique for people with disabilities.
If you know anyway I can find the name of this club I would
appreciate it. I have been all over the web trying to find the club
chapter here in Valencia, but that is all I have to go on.
Thanks for any help.
Blessings,
Cell (661) 312-6184
Nancy Pitchford <nancypitchford@gmail.com>
Santa Clarita, California USA - Thursday, November 11, 2010 at 21:31:35 (GMT)
I am writing the following to be added to your chat board on the stumpsrus website. Thank you!
My husband is an above the knee amputee and is looking for a support group in the eastern suburbs of Phoenix.
He is 40 and is looking for a group with younger members, or even
just a few people to get in touch with and connect with on a regular
basis.
Please e-mail the information to
James at
jamesd2_dixon@hotmail.com.
Thank you!
Amy Dixon
Learning and Development
PH: 602-685-9443
FAX: 602-267-3819
MAC: S4109-012
Amy.J.Dixon <Amy.J.Dixon@wellsfargo.com >
Phoenix, Arizona USA - Thursday, November 04, 2010 at 22:50:24 (GMT)
My name is Antonio Heraldo and I'm reaching out to this website for help that is critically needed.
I recently found out that the man once believed to be my father actually isn't.
After a lot of questions, the only solid information that was
consistant was that my biological father is missing a leg, or half of a
leg, not sure which one either.
He had to live in, been in or near Marietta, GA in the fall/late fall of 1978.
He may have worked in construction.
He's probably 5'8"-5'11", dark hair & eyes and anywhere between the ages of 50-60 yrs old now, if he is still alive.
I'm just wondering if there's a national list like in the movie "The
Fugitive", or any other resources that are available to the public that
I can use?
My last recourse is to hire a P.I.
I dont mind the legwork, just need some direction. Any help will be extremely appreciated.
Thank you!
Anthony Herald <awherald@yahoo.com>
Marietta, Georgia USA - Tuesday, October 26, 2010 at 14:53:20 (GMT)
Hello
An association of persons with bodily injury-amputation
"Amputirci"-Buzim, Bosnia and Herzegovina , the NGO for support people
with amputiation.
We care about people with amputation and our members are people with
all types of injuries, war, non-war and all civilians who have suffered
amputation.
We have a lot of amputees here as result of war and bad medical care here in Bosnia.
We play very important role in bosnian society.
We want to get in contact with other organizations of amputees from all
around the world to exchange informations and experience.
More about us you can find on the facebook page:
“AMPUTIRCI BUZIM
or by email:
lolin-kovac@hotmail.de
or by mail
Udruzenje amputirci Buzim,
ulica 505 viteske brigade
bb 77245 Buzim, Bosnia and Herzegovina
or by phone 00387-61-966-049
Denis Selimovic <selimovic.denis@yahoo.com>
Bosnia,, Herzegovina - Sunday, October 10, 2010 at 02:43:31 (GMT)
Well done Curt Yeager!
Dan Sorkin <DanSorkin@comcast.net>
San Francisco, CA USA - Sunday, October 10, 2010 at 02:20:51 (GMT)
I thought I would share this video with you and your websites members.
I am the first amputee to pull a backflip in the X-Games.
Here is the video!
http://vimeo.com/14193078
"Success is the ability to go from one failure to another with no loss of enthusiasm."
Sir Winston Churchill
www.kurtyaeger.com
http://www.imdb.com/name/nm2900382/
Kurt Yaeger <lameattack@hotmail.com>
USA - Sunday, October 10, 2010 at 02:19:13 (GMT)
Dick Howe Yakima, WA...
The GELL Liner sounds like the perfect solution IF you are not allergic to the GELL.
If you are allergic carrying extra Stump Socks with you during the day when the stump shrinks should solve the problem.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, October 05, 2010 at 17:31:45 (GMT)
I am a L B K A .
I lost the leg as the result of an accident over 10 years ago.
Being very active my problem is that the stump is constantly changing and swelling or shrinking.
After a few hours the stump gets to hurting pretty bad. I go from no sock up to 5 ply.
My Prosthetist tries hard to get a good fit but with little luck.
Has any one found a solution to this problem and would a Gell Liner be of any help?
Dick Howe <dhonthegotoo@gmail.com>
Yakima, WA USA - Tuesday, October 05, 2010 at 17:27:47 (GMT)
I am a film and theater director in New York City who is casting a film and I need an Above the knee Amputee.
No Exp Needed.
I can teach almost anyone to act, and enjoy the challenge.
I am hoping you can help me.
The charcter is a white male in his forties ( a down on your luck )
kind-a guy, but very loveable. He will need to wear a Santa suit, and
use a wheel chair. It is a short film, with minimual buget.
Hoping to find someone who wants the opportunity to create, and be wokring with others.
I can be reached at blumercury@gmail.com
Thank you.
Daniel Paul <blumercury@gmail.com>
New York, NY USA - Tuesday, October 05, 2010 at 12:05:13 (GMT)
Paul Hodgson in the UK...
You're welcome!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, October 04, 2010 at 12:51:55 (GMT)
I have just been watching your inspirational videos on Youtube and reading other peoples positive stories.
Thank you for making this resource available to us.
I am writing this as my 72 year old mother is in surgery having an
above knee amputation on her left leg. She has had vascular bypass but
the circulation has not improved in her left leg, bacterial infection
started and so surgery was the only option.
She was so scared when we left her and I don't know how she'll cope but having seen your site I have hope.
Thank you!
Paul Hodgson <paulhodgson22@hotmail.co.uk>
Wallasey, United Kingdom - Monday, October 04, 2010 at 12:48:03 (GMT)
Hi
I love this website, it's been pretty informative.
I too am interested in a support group or some such for the spouses
of amputees and the care required, especially for those of us who have
no nursing experience.
If there is no such place, is there a good spot one can recommend to start one?
My hubby had a BTK amputation in Feb. 2010. We thought we'd been through the worst of it and another infection popped up.
Please can someone recommend a website.
Thanks so much!
Sammie Martin <samdcs@aol.com>
Klamath Falls, Oregon USA - Saturday, October 02, 2010 at 23:01:10 (GMT)
My
husband,Hugh was in a motorcycle accident 15 months ago. He has far
exceeded our amazement with his abilities as a new amputee.
He has a through the knee (Disarticulation) of the left
limb.
We have managed to scuba dive, skydive and are going to San Diego to the CAF to participate in the Tour De Cove this month.
My question is more for myself.
I am wondering if you have any links to support women of amputee
husbands, to teach me how to deal with this as well as be a supportive
spouse.
I look forward to hearing from you.
Michelle Simmons <mishelley@sbcglobal.net>
USA - Saturday, October 02, 2010 at 12:52:32 (GMT)
I am looking for an Orthopedic surgeon to fill out my limb waiver for my Commercial Drivers License.
Can you help me?
Please call 903-821-8057
Terry Thomas <terrynormanthomas@gmail.com>
USA - Monday, September 27, 2010 at 21:19:09 (GMT)
I'm a 32 yr old B/K amputee and am looking for some other sports minded women amputees I can chat with.
I don't know any other amputees that are my age and would really
like someone to talk to and maybe ask questions, compare experiences,
etc.
If you could provide me with somewhere- resources. something...I would be so grateful.
Thank you.
Qiana Woods <starr0624@gmail.com>
USA - Saturday, September 25, 2010 at 13:04:56 (GMT)
MTV'S ZUPAN CAN
Every day accidents happen that unexpectedly change a person’s life forever.
Facing a life-changing injury can be overwhelming, challenging, and difficult to understand.
MTV is developing a pilot for a potential new documentary series about
young people who have recently suffered serious injuries and are
rebuilding their lives.
The subjects will work with Mark Zupan, quad rugby player and star
of the movie "Murderball," who will offer his expert advice on how to
move forward after a serious injury.
Mark is a quadriplegic who faced first-hand the adversity
of being paralyzed in a car accident in 1993.
Who we are looking for...
We are looking for one young person to be the subject of our pilot for
this potential new series. We're looking for young people between the
ages of 16-28 who are recovering from a serious injury and would like
to share their story on national television.
About Punched In The Head Productions
We are a small independent production company that’s been
contracted by Cheri Sundae Productions to find subjects for this MTV
pilot episode. We have produced several episodes of MTV’s “True Life.”
About Mark Zupan
Mark is a Paralymic athlete, motivational speaker, author, and an
engineer. He was featured in the Oscar nominated-documentary Muderball,
and has appeared in several television shows including Miami Ink and 30
Days.
How to contact us
718-422-0704 ext 108
zupancanpilot@gmail.com
Petra West <zupancanpilot@gmail.com>
USA - Tuesday, September 21, 2010 at 12:06:19 (GMT)
Hi,
So, Mom finally got her practice prosthesis, and Houston we have a problem...
She had a total knee replacement on that leg and when she tries to stand on the prosthesis, it kills her just below the knee.
This is not phantom pain.
It is just a few inches above the end of her stump.
Also, it seems her knee wants to hyperextend. She has been doing
exercises to strengthen that area but she is very disappointed.
Do you know of anyone who has had a total knee replacement prior to a
BK? Or is this kind of thing common when you get your first prosthesis?
I don't like the guy who is fitting her, but there is no one else in that area of town.
She lives in Ventura County and it ain't the best place for doctors, let alone this kind of thing.
Anyway, I was just curious if you knew anything about this.
Have a good one!
Lisa <LakotaLisa@aol.com>
Ventura, CA USA - Tuesday, September 14, 2010 at 02:54:44 (GMT)
Mallory Rimmer in Greenville, NC...
I had the IDENTICAL reaction to the Gel Liner.
It turns out that you & I are simply allergic to the Gel.
My Dermatologist prescibed a simple creme to rid me of the rash...it cleared up in 48 hours.
Use a WOOL liner instead of the Gel.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, September 13, 2010 at 23:15:25 (GMT)
Hi,
I am an BTK amputee and am in the process of getting my first
prosthesist and the doctor has me wearing the gel liner to get use to
it and to help with swelling.
I am having problems with an itchy rash on the skin from it. Any suggestions?
Thank you!
Mallory Rimmer <rimmerm69@gmail.com>
Greenville, NC USA - Monday, September 13, 2010 at 23:11:08 (GMT)
Looking for some feedback from BK amputee's using the Ossur running foot.
I’m interested in hearing how much did they add to the length when they have you standing with equal weight on both legs.
I’m 195 lbs and they’ve added two inches to the length for compression when I jog.
If you’ve had other issues or suggestions I’d sure like to hear about it.
Marc Nadell <amskydiver@sbcglobal.net>
Grand Rapids, MI USA - Friday, September 10, 2010 at 02:37:13 (GMT)
Dan,
I want to add to your comment regarding the Renegade foot from Freedom Innovations.
I have been using the Genesis II+ from MICA Corp with similar results.
I can feel the ankle flexing left and right, forward and back over
uneven ground when doing yard work and stuff.
It is so much better than the foot I had previously, that when I was
trying it out, I had only taken 4 steps, and wanted to go for a walk. I
hadn’t wanted to do THAT since becoming a RAK about 3 ½ years prior!
Rick Morgan <Richard.Morgan@steelscape.com>
Longview, WA USA - Wednesday, September 08, 2010 at 19:27:53 (GMT)
I am a RAE amputee.
I have 4 kids and I'm a school teacher. I lost my arm in a horse accident when I was 3.
I'm now 39 and facing rotator cuff surgery on my remaining arm due to
lifting my baby's car seat in and out of the car 5 years ago. I tried
physical therapy and now the doc says it's time for surgery.
I'm wondering if any other amputees have gone through this. I'm just
trying to figure out how I'll be able to do anything, let alone
self-care in the weeks following surgery.
Are there other groups or organizations or places on the web where I might be able to locate someone who has gone through this?
Thanks!
Tricia Guymon <hikingfamily95@yahoo.com>
USA - Monday, September 06, 2010 at 03:02:08 (GMT)
Justin Maharowski in Dunbar, PA...
The best foot I have found that requires practically no attention from
your Certified Prosthetist is the RENEGADE manufactured by FREEDOM
INNOVATIONS.
I have used this incredible foot for nearly 3 years submitting it to all kinds of abuse.
It does not break down, allows walking on uneven surfaces, inclined planes and sand and is comfortable!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, September 03, 2010 at 03:32:24 (GMT)
I am a BTK amputee, left leg.
I recently lost my foot in December 2009 in a train accident.
I am an active 31 year old and have three kids 6, 2, and another one due in October, that keep me busy.
I am having trouble finding a foot that can keep up with me. I've
gone through 2 foot shells, 8 liners, and an ankle in just six months.
I'm not having a lot of pain other than occasional phantom pain, and discomfort when I don't add enough socks around my stump.
Does anyone know of a foot to talk to my prosthetist about that is tough enough for me?
I've searched the internet but get frustrated staring at this screen
all day. Thank you for your time and hope to get some emails if you
have any advice.
Justin Maharowski <cornbreadandbeans@hotmail.com>
Dunbar, PA USA - Friday, September 03, 2010 at 03:23:33 (GMT)
Amputees Express Concerns About Radiation, Privacy, To TSA
Many Using Prosthetic Devices Say X-rays Are A Concern
Airline travel has long since lost its glamor, but for some, the
screening process is one that is a cause for particular concern.
Earlier this summer, the Amputee Coalition of America called on TSA
to "clean up its act" when it comes to screening people who have lost a
limb and use a prosthetic device. The group says it conducted a survey
which revealed that many amputees feel they have been subjected to
"inconsistent, unfair, abusive, and often embarrassing screenings" at
airports.
USA Today reports that one of the biggest concerns of amputees is
the CastScope backscatter X-ray machine which can be used to detect a
potential threat in a prosthetic device. Many amputees say the are
concerned about radiation from the devices, particularly if they are
frequent flyers, and that many of the operators are improperly trained
in its use. The CastScope does not scan the entire body, but focuses on
the area with a prosthetic, cast or bandage which TSA says could hide a
weapon.
Tek84, the company which makes the device, says it uses a very low
dose of radiation for its scans, far lower than the dose limits set
forth by the American National Standards Institute. But doctor Jeffery
Cain, who has had both legs amputated below the knee, says he receives
the equivalent of 20 X-rays when he is scanned by the CastScope. Cain,
a board member of the Amputee Coalition, says traveling just 5 times a
year could exceed the limit considered safe for X-rays.
Tek84 and TSA contend that it would take 2,500 X-rays to reach the
limit, and that the CastScope delivers lest than 1 microrem of
radiation per scan. But while passengers who do not wish to submit to
the full body scan can be searched in other ways, TSA says the
CastScope is the only method available to screen prosthetic devices.
Some amputees have complained that they have been treated like
"third class citizens" and even missed flights because no one was
available who knew how to operate the CastScope. TSA's new
administrator, John Pistole, says he is reviewing those policies. TSA
said it spent $1.7 million on 35 of the devices in 2007, and that they
are deployed in 11 airports around the country. The agency says there
are no plans to purchase additional CastScopes.
FMI: www.tsa.gov, www.amputee-coalition.org
Dan Sorkin <DanSorkin@gmail.com>
San Francisco , CA USA - Thursday, August 26, 2010 at 18:16:11 (GMT)
Hi
I was taking a flight and while i didn't have to use it I was
offered the chance to use the Castscope Machine...but opted for a hand
wand and patdown search......
What is your opinion of the Castscope Machine??
John Ackroyd <CrowWalker56@aol.com >
Big Rapids, MI USA - Thursday, August 26, 2010 at 12:28:42 (GMT)
CASTING CALL FOR AMPUTEE
Dear Dan,
I am a casting director working on a TV series in Charlotte, NC. We
have an episode shooting this Thursday that involves a caucasian male
amputee and I was hoping you might be able to help spread the word.
The show airs on a major cable network and follows an ex-cop turned
PI as he fights crime. It is a drama and we use non-union actors based
in the south.
Please let me know if you have any questions.
Thanks!
Meg Morman
Casting Director
Seeking Male Amputee
for TV Series shooting Charlotte, NC
TV Series in its 2nd season on a major cable network is shooting in Charlotte and looking for a
Caucasian male amputee for a guest lead on the show.
You must be local to the south
You will be the lead in one episode and be paid $250 per day
This is a speaking role but no acting experience is necessary
Please email for more information.
Send photo, name & contact number
greenvillecasting@gmail.com
Meg Morman <greenvillecasting@gmail.com>
Charlotte , NC USA - Tuesday, August 24, 2010 at 19:41:00 (GMT)
I have been a Knee Disarticulation amp since 1971.
Since this is primarily a knee-bearing weight type of amp, the various
traumas of pressure and skin abrasion have to be guarded against.
For me the best way to accomplish this is by the use of distal pads.
Here's the question:
Have any KD amps out there found a source for durable, tough, soft, thick, gel-filled distal stump pads?
I cannot find a source.
Have used various types of foam pads (don't work well, they compress
too much), and am currently using a computer mouse pad that's about
3x5. It's breaking down though because it obviously wasn't intended for
such abuse, and the squishy jelly-like stuff is being forced out.
Thanks in advance, guys, for any advice.
Jim Sutton <soma9x9@gmail.com>
USA - Monday, August 09, 2010 at 13:05:19 (GMT)
I'm a 65 year old male in very good shape and very active.
Due to PAD, it appears that I will have to have a BTK amputation of the left leg.
I currently have a desk job, but I also have the opportunity to move
around on occasion...this job is mainly on the phone and computer in a
hospital setting.
Assuming my recovery goes well, what should I anticipate for a return
to work (i.e. 2 months?) and what are the milestones (i.e. about x wks
in hospital, about y weeks.....etc).
Thanks for any guidance you may provide.
wayne matthews <wiffum3@hotmail.com>
Middletown, MD USA - Sunday, August 08, 2010 at 12:19:29 (GMT)
It
does take 6 months to a year for the stump to stop shrinking. It does
make sense that the size of the socket will have to be adjusted during
this period as well.
Usually if the socket is PERFECTLY fitted you need only to keep
adding thicker & thicker stump socks until the swelling is
completely gone.
Usually at that time a completely new socket is created for you.
About the pain.
All amputees are different. Some experience intense Phantom Pain...some do not.
If the pain is caused by an ill fitting socket your Certified
Prosthetist should make minor adjustments until you achieve a perfect
fit.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, August 04, 2010 at 21:58:33 (GMT)
Hi...
Please respond.
I had my amputation in August of 2009. They (Yankee Bionics)have been working with me exclusively since then.
I'm having pain/discomfort, not all the time but some days like this
morning it was about an 8 out of 10. But later in the day, it is about
2-3 level.
They keep telling me, "I'm still a new amputee" and this fitting of the socket will go on for the next 6 mo. to a year."
Is this normal what I'm going thru?
Should I just tough it out ?
And accxcept that there are just good days and bad days at this stage?
Thanks in advance.
Tim Serra <timserra@sssnet.com>
Massillon, Ohio USA - Wednesday, August 04, 2010 at 21:46:51 (GMT)
Wheelchair Accessible Apt. for Rent - Sacramento, CA
I am the owner of a small apartment complex (8 units) in Sacramento, CA.
I currently have two (2)wheelchair accessible, 2bed/1ba apts. for rent.
I would like to advertise these units to individuals or families who could benefit from the accessibility status.
If you know of organizations or individuals who might be interested in these units, PLEASE let me know.
Thank you for any assistance you can provide.
(916) 551-1208
S. Brown <pleokin@aol.com>
USA - Wednesday, July 28, 2010 at 12:39:53 (GMT)
My
husband is an amputee AND he's also a Certified Prosthetist of 30+
years. He works for a small, independent practice in Mountain View, CA,
and I'm always on the lookout for him to find ways to stay active in
the amputee community while at the same time, getting the word out
about his services.
Being an amputee since the age of 4, he's become a craftsman at
what he does and he finds his passion and reward in helping other
amputees, especially the ones new to a life without a limb. He's been
there.
How would I go about getting him listed on your links page as a
source for excellence (and understanding) in the latest prosthetic
advancements?
Thanks so much. And please ... Sign me up for your newsletter!
Sincerely,
209-614-9135
Joey Huestis <jhuestis@sbcglobal.net>
Mountain View, CA USA - Friday, July 23, 2010 at 13:02:08 (GMT)
Dear Robert,
How disabled are you at 38? I am able to do most things, but I cannot be as physical as I was before.
What did you do before your near fatal accident that took all 5 toes off your right foot?
I installed granite and tile
What can't you do now that you did before losing your toes?
I can do most things, just not as fast. I also suffered a brain
injury during the accident and that gets me a bit confused at times.
Who's fault was the accident?
They say it was my fault because I was behind the truck.
How did it happen?
I was driving on the freeway at 7am going about 70MPH, there was a
truck hauling steel in front of me, but it was only going 35 MPH
because it was slowing down. It was too late to notice and I ended up
hitting the back end of the truck. I was trapped for 1 1/2 hours. The
engine caught fire. They had to cut me out of my truck. I suffered a
TBI and have since gained most of my memory back. I sometimes get
frustrated when I try to do too many things at once.
Were you the driver?
I was the driver
What school & where is it that you would earn your Bachelor's Degree?
I just enrolled in University of Phoenix, Ontario California location
A Bachelor's Degree in what?
I want to get my teaching credential to teach P.E.
Thank you!
Robert Elliott
909-241-8978
Robert Elliott <nvention@msn.com>
USA - Wednesday, July 21, 2010 at 13:26:03 (GMT)
Marc Nadell...
If I have an ill fitting prosthetic socket, one that feels
uncomfortable, my Certified Prosthetist, Wayne Koniuk of San Francisco
Prosthetics, rubs lip rouge on my Stump Sock, then has me place my
stump in the socket and has me walk a few steps.
When the stump is removed from the socket the lip rouge leaves markings where the pressure points exist.
Then the Certified Prosthetist sand papers away the
pressure points.
Works every time to create a PERFECT FIT!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, July 19, 2010 at 22:11:30 (GMT)
I've been a BK amputee for ten years and I'm hoping to get some advise on working with the prosthetist.
I've had a number of different legs made and I'm finding it very
frustrating having someone else tell me what I need and how it's going
to fit.
Do other amputee's just accept the discomfort until they get use to it?
As I've gotten more educated on how they cast the stump and then shave
it down so the prosthectic leg so it will be supported equally around
the sides of the stump is just an eduacted guess.
I found a company that makes a pressure sensitive film that I can place
inside my cast to see how my weight is distributed in the cast. I plan
to share this info with the prosthetist so they can do a better job in
building the next cast.
Have you heard of anyone doing this?
Marc Nadell <amskydiver2001@yahoo.com>
USA - Monday, July 19, 2010 at 22:03:07 (GMT)
I
am a 44 year old hip disarticulate I have been this way since birth. i
also have a deformed left hand. I am a father of 6 1 biological 5
adopted.
I have lived a very active lifestyle playing sports most of my life
and breaking more legs then I could possibly count. I have worked my
whole life, I even applied for and was granted the opportunity to go
through the police academy in the state of Ky.
To my knowledge I am the only one with a prosthesis to ever do this in Ky.
Well I passed.
I served as a Ky Vehicle Enforcement Officer for over 15 years.
As the years has passed I found walking had gotten so difficult that I
no longer felt safe or felt that I could do my job at a level that a
non handicapped officer could do. I applied for my state disabillity
retirement and was approved after 2 appeals.
My artificial leg was never uncomfortable however I had cronic fatigue
in my lower body. Probally didnt help that I wore a gunbelt that
weighed approx 10 lbs around my waist for so long.
I have never applied for federal disability but due to the income being
only 2000.00 gross less a month. I live in a rural area and
opportunities for a man my age to to start over and make anywhere close
to the same income that I gave up is non existant.
My cronic lower fatigue has not improved in the past 2 years. I am now
starting to pay for my long term crutch use with shoulder pain.
Folks I need some advice. Please shoot me an email tell me what I am doing right or what I am doing wrong.
Added information I am from the northern part of Ky. and I only have a
high school education. College was not required at the time I went
through the police academy.
Thanks for reading.
Jamie perkins <jamie.perkins12@yahoo.com>
Kentucky USA - Friday, July 16, 2010 at 13:33:51 (GMT)
birdymom61...
The Physical Therapists at your Hospital are a rare collections of MORONS!
Physical Therapy should begin IMMEDIATELY on your Uncle.
They simply proceed with the therapy while your Uncle wears his Prosthetic Limbs during the therapy.
Dan Sorkin <DanSorkin@gmail.com>
SFO, CA USA - Wednesday, July 14, 2010 at 21:56:50 (GMT)
I came upon your website when researching for a family member and thought maybe you could give me some information.
My 64 year old diabetic uncle, a double amputee below the knee,
recently fell off a ladder and broke his hip. He suffered for three
days before surgery could be done.(hip replacement)
I am just finding out that neither his surgeon or physical therapist
have worked on a case like this and so now my uncle is still in a
hospital bed in Kalamazoo , Michigan and they are not proceeding with
therapy because they have never had a case like this before.
Do you know anyone who has had a situation such as this of do you know of a physical therapy group who specializes in this area?
Thanks
birdymom61 <birdymom61@aol.com>
USA - Wednesday, July 14, 2010 at 21:51:33 (GMT)
Robert Elliott
How disabled are you at 38?
What did you do before your near fatal accident that took all 5 toes off your right foot?
What can't you do now that you did before losing your toes?
Who's fault was the accident?
How did it happen?
Were you the driver?
What school & where is it that you would earn your Bachelor's Degree?
A Bachelor's Degree in what?
Inquiring cheerful cripples like me want to know.
Happy Independence Day!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, July 08, 2010 at 19:50:15 (GMT)
My name is Robert Elliott.
I am 38 years old and was in a near fatal car accident in 2005 that took all 5 toes of my right foot.
I am going to go back to school to earn a bachelor's degree, but I
really need help finding scholarships or grants that are for the
disabled. Can you help?
Thank you so much,
909-241-9398
Robert Elliot <nvention@msn.com>
USA - Thursday, July 08, 2010 at 19:44:57 (GMT)
Hi, my name is Birgit,
I'm a 44 year old woman, living in upstate NY. I'm writing to you in hopes of getting suggestions for wound care.
I was in a motorcycle accident on May 20, 2009 and lost my leg. It
was a traumatic amputation. I needed 2 skingraft surgeries, in order
for them to save my knee.
After I was fitted for my first prosthesis, things were wonderful - finally I had my independence back.
Well that didn't last long, because I ended up with sores/blisters on
the bottom of my "shorty". I didn't even wear my leg all the time,
started off with an hour a day and slowly increased the time I wore it.
It took months to heal and I'm finally in my second prosthesis.
Sadly I developed another blood blister and was forced to go back on
crutches. Since my "shorty" is all scared and horrible looking I know
it will take time to heal, but what can I do in the meantime to rush
the process.
What kind of ointment, bandage, or 'magical potion' can I use??
Thanks for reading my mail and I'll be waiting patiently for suggestions.
Birgit Aiello <birgitaiello@yahoo.com>
New York USA - Sunday, July 04, 2010 at 17:49:06 (GMT)
Dear Lisa,
Stumps 'R Us Member B/K amputee Roberta MacDonald is 93 and joins us
regularly for our annual bowling party, San Francisco Bay sailing
outings and Bar BQs. There is no reason your mother could not do the
same. Roberta decided after a time to use a wheel chair in addition to
her prosthetic device. She wears the prosthetic leg all day removing it
only to sleep & bathe.
At 83 I have a B/K amputation but mine was at age 43. At 83 I am a
current Flight instructor, walk, dance and do pretty much everything I
did before losing the leg.
To support your mother through this it is important to find an
amputee support group like Stumps 'R Us. If you do not live in the San
Francisco Bay Area I would contact the ACA (Amputee Coalition of
America). They have a web site and an 800 telephone number and can
recommend a support group.
Usually 6 to 8 weeks after amputation she can get back to the life
she had before. It takes about a year for the stump to stop shrinking
and assume its final size. The Orthopedic Surgeon & the Certified
Prosthetist plus the rehab people will guide your mother through what
she has to do to complete the rehab process.
She should not need skilled nursing at home. She will need assistance to & from rehab.
If she does not intend to do a lot of walking the Symes Procedure
is less invasive. Most of the amputees I know of elected to have a B/K
operation after having had the Symes. They found it easier to walk with
less pain with the B/K procedure. A B/K is what I had done & I
never regretted it.
For a B/K amputation the foot I recommend is the RENEGADE by
Freedom Innovation. It is the one I use. It requires little or no
maintenance and allows easy walking on uneven surfaces. The Prosthetic
Device (socket) is created by the Certified Prosthetist who fits your
mother's residual limb.
If you have any other question please do not hesitate to ask.
Good luck,
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, July 02, 2010 at 03:40:01 (GMT)
I
came across your email on the Stumps R Us site and wondered if you
would be up to holding the hand of the daughter of someone about to
have their leg amputated?
My Mom is 84 and has Stage 4 ulcers on her foot. Now the gangrene has
set in and they have to remove her leg. She fell and broke her ankle
and then the sores began. We have tried for months and months in wound
care and they say there is nothing more they can do.
We have been the "ask the physician" route before and got nothing but
lies. I would like to hear the answers from someone who has done this
and who is near Mom's age. So my questions are these:
1. What do I do to support her through this? Make this easier on
her? She is not very strong and will probably not be able to walk. She
had hip replacement on the opposite leg just this January and never
really completed the rehab she should have. She is scared to death, as
am I.
2. How long will it take until she can get back to whatever life she
has left? Meaning...going home with help and being able to transfer to
bed, wheelchair, shower chair...maybe taking short trips to a Casino or
shopping?
3. Will she need a skilled nurse to help her in her home? I read
about having to wrap the stump and things she cannot do on her own.
4. Should we ask for the BK if they are going to only do the Symes?
5. Since we both live in California, can you suggest any services
she might need? Is one prosthesis manufacturer better than another? One
type of prosthesis better than another?
6. How long is the average rehab?
I would appreciate any sage advice you can give us. This is very traumatic for all involved.
Thank you,
Lisa <LakotaLisa@aol.com>
USA - Friday, July 02, 2010 at 03:36:18 (GMT)
Hi, my name is Danielle and I am 23 year old Symes amputee, following two tumors in my left foot.
For the first three to four years I readjusted wonderfully. The
amputation of my left foot eliminated the pain I had been dealing with
since the age of 7 and my prosthetic was cosmetically appealing and
allowed me to exercise.
However in the past two years I have found myself in a significant
amount of pain. Shooting pain from my stump to my knee wakes me up on a
nightly basis right now and I also have adjusted to walking with pain
daily.
This is quite frustrating since I lived the first four years as an amputee virtually pain free.
I have seen several doctors to regulate the pain but there has been no solution.
Recently, I saw a new orthopedic surgeon who made a strong
recommendation...have revision surgery to move from Symes to Below the
Knee.
Because I have already had calf atrophy from the initial amputation,
this doctor believes I will have a quicker recovery than normal. He
also will put me in a temporary prosthetic the day of the surgery so I
can start to put light pressure on it within a few days.
I am active and healthy and am especially interested in the prosthetic
technology offered to BK amputees (in comparison to Symes). I do worry
however about the possibility of phantom pain (never have experienced
this) and an extremely tough recovery.
I wonder if there is anyone out there who has gone from a Symes to BK
or who knows of anyone because I would really benefit from speaking to
someone who has gone through this. Any thoughts on this are greatly
appreciated!
Danielle McLaughlin
Administrative Assistant
Assistant to the Directors
School of International Relations
University of Southern California
Danielle McLaughlin <daniellejmclaughlin@gmail.com>
Los Angeles, CA USA - Tuesday, June 29, 2010 at 22:13:40 (GMT)
Dan,
Thanks for getting back to me.
I understand the procedure, as much as I can without having it, but
what I'm looking for are some of the conditions that would qualify
someone to have the revision.
I was hoping to get some background in that area so I don't waste
my time or a doctor's time. I also realize that no one, except an
ortho, is going to be able to say "Yes, Dennis, you qualify!".
Just trying to obtain knowledge and understanding, because knowledge is power, especially when dealing with insurance.
One more question, how do I get my question posted on the guest book, so I can hear from as many sources as possible?
Thanks for your time,
Dennis
On Sat, Jun 26, 2010 at 3:13 PM, Dan Sorkin wrote:
6.26.2010
Dear Dennis,
Please navigate back to the Stumps 'R Us web site www.stumps.org and
click on ERTL Procedure. The surgical procedure is spelled out there in
detail. I suggest you contact Dr. William Ertl directly in Oklahoma
City William-Ertl@ouhsc.edu for a listing of Orthopedic Surgeons that
have been trained and perform the ERTL Procedure if you can't make the
trip to Oklahoma City from Flagstaff, AZ for the procedure.
I fully agree that the Symes Amputation is a cruel procedure that
in many cases exacerbates the pain & diminished utility of the
remaining limb.
Several members of Stumps 'R Us have had the ERTL Procedure and are
practically pain free and now dance, play golf, hike and do everything
the "normal" two leg adult is capable.
Good luck & please keep me in your decision loop.
Dan Sorkin
www.stumps.org
Chief Stump
Socialism only works in two places:
Heaven where they don't need it
and hell where they already have it.
...ronald reagan
From: Dennis Taylor [mailto:den.taylor@gmail.com]
Sent: Saturday, June 26, 2010 12:57 PM
To: DanSorkin@gmail.com
Subject: Qualification for the ERTL procedure
Hello, my name is Dennis.
I am a Syme's amputee, and have been since 1996, and suffer form
serious chronic pain and am trying to gather as much knowledge as I can
about revision amputations.
I have seen pain specialists and they seem to want to try any and
all treatments to keep one from having a revision amputation. I do not
see this as a long term solution to my problem, because I don't want to
be on pain medication for the rest of my life, I don't fancy the idea
of putting anything in or around my spine(especially something that
blocks feeling), and nothing has seemed to work yet.
I am in total agreement with Brian Kroll, and I believe that that
they should not allow any Syme's amputations to happen, I believe it is
cruel and inhuman.
I have been trying to find as much information on the Ertl
procedure, and all I can seem to find is really basic information on
the procedure itself. What I am looking for is what are the
qualifications to have the procedure, what do I need to do to convince
my doctors that this would be a good thing for me to have. For me, it
is about being as pain free as possible as well as having a higher
quality of life. I have a 6 year old, I love to hike and be outdoors,
and it is getting to the point that I just can't do any of this
anymore.
If anyone has any information or can point me in a useful direction, I would greatly appreciate.
<
Dennis Taylor
Flagstaff, AZ USA
Dennis
Let us rise up and be thankful, for if we didn't learn a lot today,
at least we learned a little, and if we didn't learn a little, at least
we didn't get sick, and if we got sick, at least we didn't die; so, let
us all be thankful. -
Buddha
<>
Dennis Taylor <den.taylor@gmail.com>
Flagstaff, Arizona USA - Monday, June 28, 2010 at 01:19:25 (GMT)
I am writing today to hopefully obtain some information for my uncle.
He is a double leg amputee, not a veteran, and needs assistance to get his small bathroom made handicap accessible.
The home was built over 30 years ago and at that time, he was healthy.
He and his wife both live off social security and pension. They fall just over the limit for
assistance for government benefits, yet, with doctor bill and utilities they live well in poverty level.
Do you know of any organization that will assist in helping them with a handicap accessible bath?
Thank you
Jolean Powers <njpowers@setel.com>
USA - Thursday, June 10, 2010 at 19:34:47 (GMT)
I'm
a 48 yr old female below elbow amputee in Michigan. I have about 1/3 of
my forearm left. My amputation was from a severe dog bite. There was a
lot of damage from the bite + when they tried to graft in veins, one
kinked, so they had to re-do it. By the time they got done + started
unclamping things, there was clotting + they couldn't get good blood
flow back to the hand. This happened on 9/5/07 and my amputation was on
9/11/07.
Yup, Sept 11.
Several people commented that it was too bad it was on such a famous
day since it was bound to be a reminder every year. I just told them
that it was a great reminder that a lot worse things happen in this
world.
I was a police sergeant at the time this happened + my goal was to
go back to working the road. I was very lucky that there was an inside
job available while I recuperated. At the beginning of the year, both
the administration + the supervisors union came to me to ask if I was
going to retire when my 25 years was up in March. Since they were
planning lay-offs + my myoelectric greifer hook was still not reliable
enough for my standards (to be able to grab + hold on to people), I
opted to retire in March. I just could not defend someone getting laid
off so I could try to do something that was a long way off.
I go to the Rehabilitation Institute of Chicago for my prosthetic
because I was lucky enough to get in to Dr Todd Kuiken for my
prosthetic. Since then, I have racked up numerous breaks to my greifer
hook. I'm a little hard on it due to being very active at the gym. I
can do push-ups, assisted pull-ups + dips, burpees, and everything else
my trainer comes up w/ in boot camp classes. They have been great at
RIC + always tell me they would rather have me break it doing things w/
it then just throwing it in a closet. I have to give my trainer a lot
of credit - he's had to get used to my arm flying off in class! (I
sweat a lot so it gets slippery inside) He has always taken the
approach w/ me that this is no different than someone coming back from
shoulder or knee surgery - if I can't do something, we either adapt or
substitute for the exercise. That was exactly the attitude I needed to
hear from a trainer.
I first heard about your group from Dr Kuiken. He created a booklet for
new amputees that was very helpful. One of the support group he listed
was Stumps R Us + I loved the humor in the name! I have been able to
maintain my sense of humor about my situation. Of course, I've had my
down moments, but I usually get bored pretty quickly w/ feeling sorry
for myself. In reading over some of your postings, it's clear that is
your group's attitude also. I am planning on attending the ACA's
conference in CA in August + will be going to the Peer Counselor
training. When I was in the hospital, it would have been nice to have
talked to an amputee to have heard about some of the things to expect.
Hopefully I can provide that for new amputees in the future.
Obviously, I can't meet your group in San Francisco but I'd love to get your pamphlet and see more about your group.
Mary Stevens <mstevens357@gmail.com >
Mason, MI USA - Monday, June 07, 2010 at 13:30:54 (GMT)
Brian Kroll BK vs. Symes
>
It has been quite some time since I have posted here. I’m not the expert but a few things to consider.
One I would never advocate having an amputation but given certain
situations as an amputee I would definitely elect a BK over a Symes.
Dan Sorkin had mentioned the ERTH Procedure, which is a great resource
and path to research. Also when it comes to prosthetics, as you know
with Symes the styles of feet/components are very very limited. One
style of short feet and in some cases some sort of foot orthotic for
the sound leg.
With a BK the styles of prosthetic feet are endless. If running is your
thing there are feet for that. If swimming is your thing there are feet
for that as well or if you just want the prosthetic to walk on
comfortably and live a normal functional activity level there are
several styles for several functions of activity and simply put what
ever your activity level can be matched by your prosthetic to
accommodate YOU, not your body having to accommodate to your
prosthetic.
There are more options available with a BK.
As far as complications that may arise. As with any surgery/amputation
the recovery time is the worst. Surgery…2 weeks post op stitches come
out than 2 weeks in a shrinker 1-month fabrication of check sockets and
delivery.
Your new residual limb will take a year to fully mature and shrink down
and get used to but with good sock management and a “very” good
prosthetist you should be up and going in about 2-3 months from date of
your surgery.
Best of luck to you and whatever choices you decide to move forward
with feel free to contact me directly or indirectly thru Stumps R Us.
Joe Kennedy -Saint Petersburg Florida --RBKA --
This is Amy with True Grit extras casting.
The photo double for one-armed Mattie has been selected. It all really came down to sizes & hair style.
We've loved meeting & getting to know such amazing talent!It
was sad for us to not get to work w/so many. However, we'd love to keep
you in mind for future projects.
Please note - we had a difficult time fitting people into available
sizes. Our film is extremely authentic & our Costume Dept rented
actual pieces from the 1800's.
The sizes were quite different in that time period. The challenge for
us was fitting people into them! For example - perhaps someone had a
chest & waist size that was perfect - but not tall or small enough,
etc. It was extremely difficult - like an intricate puzzle.
Believe me - we adore PEOPLE.
The challenge was fitting those people into the costumes, etc -
which is ultimately not our call! The Hair, Make-Up & Wardrobe Dept
all had to advise, etc. Whew!
We absolutely believe that you would've been an asset to our film! It makes us sad that we were not able to utilize everyone.
Again, we'd love to keep you in mind for future castings & will let you know if anything should change on our end.
Please note - If there are changes or additions to TRUE GRIT - I
send notices out thru this email first. I also do other castings around
the world & would love to consider you & keep your info on file
- if there is somthing else, down-the-line you'd be appropriate for. I
will contact you if this is the case.
If you'd rather NOT receive notices about future castings or
productions - please reply w/OPT OUT in the Subject Line. I will delete
your file.
Best Regards-
True Grit Extras Casting
512-637-6775
Amy <texascasting2010@gmail.com>
Austin, Texas USA - Tuesday, May 25, 2010 at 18:15:33 (GMT)
My name is Peter Lewis.
I am going to be shooting a short film this summer and was looking
to employee one amputee actor and i was wondering if there was a way to
use your site as a resource.
It is a short, slightly experimental version of Peter Pan and i am
specifically looking for a 30-60 year old lanky male with one hand
missing.
I am in the Seattle area.
I was just wondering if there was a way to advertise this on your site and if it would be an appropriate place to do so.
This would be a very low-paying gig for one day's work.
Thanks
Peter Lewis <peterolewis@gmail.com>
Seattle, WA USA - Friday, May 21, 2010 at 19:33:22 (GMT)
When researching the availability of rental bikes in the U.S. for people with disabilities, I came across the Stumps website.
My question is simple, but after talking to several people, I fear, there is no simple answer:
The question is: Do you know of any outlet/dealer in the US, that rents
out motorcycles to people with disabilities? Or do you know, who could
provide a binding answer on legal/liability questions, as we might not
need a special bike, but only an organisation or person, who would
provide a one.
Reason for me asking is, that a friend and I want to travel the
Route 66 in August 2010. While I have no disability my friend is a
right leg amputee. He has a German driving license, and currently
drives a Yamaha
with a modified brake, which he can handle with his left leg.
When speaking to the head of the German Harley-Davidson traders
association, he told me that when driving in the US, it might be
sufficient to have a bike equiped with an ABS. The travel agent I
talked to however said, that the rental company they are working with
(Eagle Rider) most probably will not allow this for liability
(insurance)
reasons, especially as there are different laws in different US states.
Could you advise us, whether there is any chance at all, to turn
our plan into reality, or do you know people that might help us?
Thanks in advance and best regards from Germany.
Yours
Sascha Stoltenow
Eltviller Straße 16 a
65197 Wiesbaden
Phone: 0049 172 4223439
Sascha Stoltenow <sascha_stoltenow@yahoo.com>
Wiesbaden, Germany - Tuesday, May 11, 2010 at 02:59:56 (GMT)
Hi...
Curious to know whether other amputees have heard that Kaiser does not cover the cost of test sockets?
Please let me know what others have done in this situation.
Thanks
Jamie Kwan <jamie@SES-Ins.COM>
CA USA - Thursday, May 06, 2010 at 22:56:19 (GMT)
Hi there!
Well it’s almost been a year and I am still not walking!
Refresh..
RBKA due to club foot. Have had major nerve issues and thickening at bottom. I am allergic to the liners.
Who is allergic to mineral oil gel????
ME.
Trying an Osur Iceross liner and it seems to work ok.
Have had 5 new sockets due to shrinkage and I am really hoping this liner works so I can get going…
My butt and arms hurt. Otherwise Life is grand!
I still feel more normal without the leg than I ever did with it!
Hope all is well in your neck of the woods!!!
Monica Langefeld <mlangefeld@cox.net>
USA - Monday, April 26, 2010 at 12:37:31 (GMT)
Brian Kroll...
In my opinion a B/K amputation in order to "fix" a Symes surgery is an excellent idea If:
The surgery is an ERTL Procedure performed by an ERTL trained Orthopedic Surgeon.
I suggest you call William ERTL at the University of Oklahoma to schedule an ERTL Procedure.
Either Dr. ERTL will perform the surgery or he will recommend an Orthopedic Surgeon trained in this remarkable procedure.
The ERTL Procedure (B/K) creates a bone bridge to prevent the chop stick effect created by other B/K procedures.
Not only that, the nerves and ligaments are buried in soft tissue
to eliminate or reduce significantly post surgical phantom pain.
Several members of Stumps 'R Us have had the ERTL Procedure with REMARKABLE success!
You will find more information on the ERTL Procedure elsewhere on this web site.
If you GOOGLE Dr. William ERTL, Oklahoma State University you can get his contact information.
Good luck...your decision is a sound one!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, April 20, 2010 at 13:13:49 (GMT)
First
off, I lost my foot 2 days after Christmas in '88 due to a rare cancer
known as Synovial Sarcoma. My amputation is a Symes, they took off my
foot and kept the rest but as Symes go, I got a pretty good team of
surgeons at Stanford University Hospital and it was as good as this
thing can go.
I used to belong to an amputee support group, the Northern Nevada
Amputee Support Group, it was run by Georgie Maxfield who also wrote a
very popular book about sex and disabilities. Well, if Georgie is still
around she's very old but the support group is long gone and I need
help from some other amputees.
I found the forums from the ACA, link:
http://www.amputee-coalition.org/index.html. Pretty sure you've heard
of them, I dashed off an e-mail to Charlene asking for access to the
forums but I'll have to wait for this, if there is access.
So, the problem at hand is that after 18 years the army finally
owned up to thier mistake and admitted that the loss of my foot was due
to thier inaction. Now, I'm not only getting a new prosthesis from
them, through my regular prosthetist, but he told me that if I choose
to, I can get elective surgery and have my amputation moved up to a BK.
I need other amputees to chat with so I can find out the problems that
might arise, the things to watch out for and the stuff to talk to the
doctors about. This is a big decision and I don't want to make it
un-informed like I did the first time.
Well, back then it was thought that a Symes amputation was a good idea.
So, if you can either help me find forums, support groups with amputees
that I can chat with or anything like that it would be a great burden
off of the shoulders of the 3 people currently involved, me, my wife
& my prosthetist.
Thanks
Brian Kroll <brisleep@sbcglobal.net>
USA - Tuesday, April 20, 2010 at 12:58:25 (GMT)
We
are a business that provides services to the Department of Defense. We
have a program at Ft. Irwin California which is helping our war
fighters train before going overseas. There are groups of Role Players
which are “Insurgents” and “Casualty”.
Is there a network of individuals who have amputations in California
which you know who would be interested in a short-term employment
contract?
I have pay rates available for you. The positions are in Ft. Irwin
(Barstow, CA). These people are needed to start work a.s.a.p.
Very respectfully,
ACCLAIM TECHNICAL SERVICES
Ed Zapolsky
Vice President
Certified Internet Recruiter
Certified Diversity Recruiter
101 Main Street, Suite 400
Huntington Beach, CA 92648
Toll-free: (866) 202-0506 ext. 1116
Direct: (714) 274-4816
Fax: (714) 274-6016
www.acclaimtechnical.com
Ed Zapolsky <zapolsky@acclaimtechnical.com>
Barstow, CA USA - Friday, April 16, 2010 at 02:21:07 (GMT)
I am writing to you from New Zealand.
I suffer from CRPS and have requested Amputation of the leg.
After reading thru your Forum I note there are other people who have
had amputation for this condition. Their email addresses are listed but
every time I email them I get replies saying these addresses are no
longer current.
One of the people is Don Levesque, email address is listed as:Brydongrdns@netscape.ca.
I was wondering if you had any other contacts for people thru your site
as I am really keen to contact him to see how his recovery has been.
The other person I tried to contact was Katie:
KattieJ85@aol.com
who had the same condition.
You have a great website, full of interesting stories.
Thank you for your time.
Darin Christian <mesolutions@xtra.co.nz>
New Zealand - Monday, April 12, 2010 at 11:38:58 (GMT)
Paramount
Pictures is seeking a WOMAN MISSING HER LEFT ARM to be a photo double
in TRUE GRIT, a new film by Joel & Ethan Coen (FARGO)
Character description: Photo double for adult Mattie Ross:
This woman must be MISSING HER LEFT ARM.
Optimally, she would be around 5'8", 138 lbs, slender to medium build. However, we are open to various looks.
To submit: Please do so asap! Send photos, measurements & contact information to
texascasting2010@gmail.com.
Photos should be non-glamorous, simple snapshots (incl face and
body. It's best to wear a tank top & shorts). Measurements should
include height, weight, bust, waist & hips. Incl sizes, such as
shoe, dress, pants, etc. Include age, phone numbers & place of
residence.
Approrpriate candidates may also call our office at 512-637-6775.
Rate of pay: TBD
Note: TRUE GRIT is shooting in Austin, TX. However, we are open to nationwide submissions.
Background info about Mattie Ross & TRUE GRIT: 14 year old Mattie
is a simple, tough as nails young woman. Her steely nerves and
straightforward manner are a shocking contrast to the way women behaved
in the early century. She's possessed of true grit and plenty of
determination.
The film is a remake of the western that earned john Wayne his Academy Award as one-eyed sheriff Rooster Cogburn in 1969.
In the Coens' screenplay, "True Grit" will be told from the point of
view of Mattie Ross. The movie will begin in 1928, at a point when
Mattie tells how she avenged her father's murder back in 1873, when she
was only 14 years old.
Thank you!
Debbie DeLisi
True Grit Extras Casting Director
3 Crazy Ladies, Inc.
facebook: debbie.delisi
twitter: debbiedelisi & 3crazyladies
myspace: 3CrazyLadies
Debbie DeLisi <texascasting2010@gmail.com>
Austin, Texas USA - Tuesday, March 30, 2010 at 23:06:56 (GMT)
Casting Amputees for A Feature Film
I have the pleasure of working for award winning director Ramin Bahrani who is currently casting for his fourth feature film.
Part of our cast consist of actors (both professionally and non-professional) who are amputees.
I invite you to visit www.noruzfilms.com to learn about Ramin's past films.
I would like to share this information regarding an employment
opportunity for professional and nonprofessional
actors with disabilities in UNTITLED BAHRANI WESTERN which will be the
fourth feature film of critically-acclaimed award winning
writer/director Ramin Bahrani.
Shooting dates for these roles are unknown at this time.
Bahrani’s previous features: MAN PUSH CART, CHOP SHOP, and GOODBYE SOLO
have all had global theatrical, TV and DVD release and premiered in the
world’s most prestigious film festivals: Cannes, Venice, Toronto,
Sundance and Berlin. Roger Ebert hailed Bahrani as “the director of the
decade,” and The New York Times called GOODBYE SOLO “an almost perfect
film.” (To learn more about Bahrani’s past award winning films, please
visit www.noruzfilms.com.)
We are casting for a scene set in an 1849 asylum. Prior to
the reform movement, asylums were homes to patients with mental
disabilities and the physically impaired who were often erroneously and
unjustly viewed as a threat by society.
All actors will be compensated for their time and no previous acting experience is required.
Interested parties can email inquiries to:
noruzfilms@gmail.com or contact Summer Shelton at 646-450-3052.
We are currently casting the following roles:
PATIENT WITH VITILIGO: Male patient with visible signs of Vitiligo on face.
AMPUTEE PATIENTS: Multiple roles available for men of all ages who are amputees.
PATIENT WITH PHYSICAL MALFORMATIONS: Multiple roles available for men of all ages who have visible physical malformations.
PATIENTS WITH PHYSICAL DISABILITIES: Multiple roles available for
actors with other physical disabilities including, but not limited to:
Cerebral Palsy, Parkinson’s, Spina Bifida, Spinal Cord Injury, MS,
Muscular Dystrophy, or Visual Impairment
PATIENTS WITH COGNITIVE DISABILITIES: Multiple roles available for
actors with cognitive disabilities including, but not limited to:
Autism, Asperger’s, Developmental Disabilities, Down’s Syndrome,
Fragile X, Traumatic Brain Injury, Learning Disabilities, or
Alzheimer’s
Summer Shelton, Noruz Films
+1 646 450 3052
Summer Shelton <noruzfilms@gmail.com>
Los Angeles, CA USA - Thursday, March 25, 2010 at 02:13:06 (GMT)
Aaron...
I have used a dry pro for 4 years now. They make one for
prosthetics which has a 1 year warranty and one for casts which has a
90 day warranty.
I have the 1 for casts as I did not research before buying.
It is not as thick a rubber as the prosthtic one but does the same thing.
Mine is now 4 yrs old and still no problems. It's great for the shower in the morning. Only used it once for swimming.
If you are very active swimming I would opt for the prosthtic cover as I'm sure it would be more durable.
The cost is about double the cast model, but for around $60.00 a good investment.
Let me know how it works for you.
Mark Quigley <bigquigdarts@yahoo.com>
USA - Saturday, March 20, 2010 at 14:04:57 (GMT)
Hello,
I will be starting to swim again. Until I have a custom made swim
prosthesis, I need to get something to cover my prosthesis(to make it
water proof).
Looking online, the dry-pro product
http://www.drycorp.com/content/waterproof-prosthetic-protector-informat/
seems to be the one that comes up the most.
Are any of you using this, or something else?
I note that they say it should only be worn for 45 minutes at a time.
That sounds like a pain. For those that are swimming, are you going in
the water without your prosthesis, or covering it, or using a special
made swim prosthesis, or all of the above?
Any input on this would be appreciated.
Thank you,
Aaron Osheroff <aaron_osheroff@hotmail.com>
Novato, CA USA - Monday, March 08, 2010 at 23:01:17 (GMT)
Over the eight years my deltoid mussel group has disintegrated
I am an above elbow amputee suffering in horffic pain especially in winter.
I need futher amputation
No one will do it. Shoulder is starting to become very unstable.
Have you any thoughts on the subject?
J. Papeika <jpapeika11@comcast.net>
USA - Friday, February 26, 2010 at 19:56:21 (GMT)
This is the 2010 Prosthetics Outreach Foundation Dinner Gala Auction
Event Date: Saturday, March 27th, 2010
Event Location: Meydenbauer Center
11100 Northeast 6th Street
Bellevue, WA 98004
425) 637-1020
Event Time:5pm-10pm
Details:
Join us as we raise funds to help restore mobility and independence to
children and adults in developing countries. The evening will feature
two silent auctions, an amazing live auction with 20+ incredible
packages, dessert frenzy, raffle and more!
Enjoy an elegant multi-course dinner, complimentary wines, and inspiring special guests from around the world.
Sincerely,
Cecilie Helm Darling, Volunteer <cecilie.helm@gmail.com>
Seattle, WA USA - Friday, February 19, 2010 at 00:40:44 (GMT)
Hi, I'm linda.
I am 35, married w/ 2 boys. My baby is almost 11 months old.
I'm a quad amputee and looking for others to talk with.
I've been feeling depressed since this just happened last October.
Thanks.
Linda Buranasakorn <lburanas@gmail.com>
USA - Sunday, February 14, 2010 at 15:28:31 (GMT)
Dear Jeff Schmoke...
You don't tell us how old you are or who was at fault in the accident.
If the accident were the truck's driver, you should be recompensed by
his/her insurance.
Why do you feel the need to draw disability?
I lost my leg 6 years ago. I'm self-employed. Missed three months of
work, but never even thought about applying for disability pay.
I spent all my time and energy learning to walk again so I could get back to work.
BTW I work on my feet all day cutting hair.
I may have lost a leg, but I don't consider myself disabled.
Neal Seigfried <puglover22@cox.net>
Bixby, Oklahoma USA - Sunday, February 14, 2010 at 13:53:14 (GMT)
My name is Rick Miller.
I was involved in a motorcycle accident in 1972 that along with many other injuries I suffered from a brachial
plexus injury that left my right upper extremity paralyzed .
Seven years later I elected to have the right arm amputated above
elbow, I was fitted for a prosthesis, simple manual with a hook.
I was told prior to the surgery that because I waited so long to
amputate that I probably would get very little use from a prosthesis.
I'm not sure if they were correct, or if the arm was so WW1 that I
couldn't use it ! LOL
That has nothing to due with why I'm writing you.
I recently joined a Boy Scout Troop that is for Special Needs Boys,
as an Assistant Scoutmaster. I spent many years in Scouting during my
youth, and saw an opportunity to give back some of the skills that I
learned in the
outdoors, as well as maybe pass along some positive attitude to young
boys that are facing a new way of life !
This is a new troop that was started by another former Boy Scout
that has two nephews that are autistic and will soon be of age to join
the Scouting program. He is the troops Scoutmaster, and has worked on
getting this going for two plus years.
I am trying to find some avenues to recruit boys that are age eleven to
eighteen. Because of the HIPA laws protecting the privacy of
individuals health records I am
finding it difficult to find any open doors!
Can you recommend any organizations, clubs, websites, that might help
me to reach out to these boys that have a physical, mental, or
emotional special need.
Our goal is to help these boys experience the Ozarks outdoors, to go
camping fishing, float trips, tie knots, to be a Boy Scout !
Thank you
Rick Miller
Troop 2 Ozarks Area Counsel
Rick Miller <rick.miller3@mchsi.com>
Springfield, MO USA - Tuesday, February 02, 2010 at 01:02:11 (GMT)
Dear Mark Somewhere on the Planet...
At 31 life is just beginning for you. Stop feeling so sorry for yourself. So you lost a leg...so what?
You have the latest state of the art Prosthesis made by man & you don't live in Haiti (I assume).
I lost my leg more than 40 years ago (I'm 82) and today I am still
working as an Instrument Flight Instructor. In addition I walk, dance
and run Stumps 'R Us where I come in contact with people who have
genuine reason for self pity but don't allow themselves to fall into
that negative abyss.
Possibly you won't find a job as an Olympic Coach or a Nuclear
Physicist but there are thousands of openings just waiting for a bright
eyed, positive person to fill that position.
Please contact me again and tell me what job & what woman you met that changed your life!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, January 26, 2010 at 13:53:33 (GMT)
I just came across your site and it cheered me up.
I lost my leg in March of last year. I got hit by a sand buggy while riding a quad at glamis.
My leg was ripped off right below the knee but my knee was so damaged they had to take it too.
I was concious for the whole thing and even had to put my severed leg on ice to try and save it.
Long story short...I had /have no insurance and just got a C-leg by
liquidating everything I had and am really bummed in life now.
Everyone says I have a great attitude but inside i'm really screwed up about it.
I'm only 31 and just can't imagine that I want to grow old with one leg, plus im not working and no one will hire me.
I've always worked for myself so I don't know what I'm gonna do with my life now.
Thanks for your ear. I'd like to chat with some of your friends though.
Thanks
Mark <msethi50@hotmail.com>
USA - Tuesday, January 26, 2010 at 13:38:03 (GMT)
Can you help me out?
I RECENTLY LOST MY LOWER LEG!!!
I'm writing you because you're disabled too?
Recently I lost my leg. I need your help!
I'm living locally right now in Cupertino, California and have been all
my life really, but two years ago I was clipped by a truck on the
freeway.
I got my left leg severed by the spinning truck tire when it pushed me over.
S.S. DISABILITY is telling me I'm not disabled enough in order to get any disability compensation.
Any way, I have the S.S./Disability hearing coming up and I want help
on it. If you could help me or direct me to an agency that could help
represent me, that's what I want.
Whatever kind of monetary assistance I can get from them because I can't walk without a prosthetic leg will help.
Please get me an E-mail back as soon as possible if you can.
I'm also looking for help, or character support, someone that could
represent me also to fight for my disability income (We pay into it!!!)
Thank you!
JEFF SCHMOKE <tripodaliens@yahoo.com>
Cupertino, CA USA - Tuesday, January 19, 2010 at 22:51:38 (GMT)
Peter Leland in Arlington, Virginia...
The Spring 2010 GIMPY will be, "in the mail" to you in two weeks!
Your positive, whimsical Stumps 'R attitude is teriffic!
Keep it up!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, January 17, 2010 at 21:42:58 (GMT)
Subject: Maybe it was YOUR, change of address........
Hey so what happened ?
I fell off the mail list? just because I'm on the opposite coast? Ahhhh discrimination against the East Coasters?
You'd better watch out or we'll trip over the lighthouse on you while you're limpin along, ha ha.
OK fellow gimpsters, bad news last year I "lost" the other leg, so
now I'm bilateral minus, one ak and one bk, which seems to make it
harder to get back on my (prosthetic) feet but I'm learning, in any
case I demand that I be put back on the Stumps Gimpy newsletter mail
list or at least the e-list or whatever you have.
Now don't make me come out there and track you guys down and kick you with my prostitute limbs.
Talk to you later.......
Thank you for your consideration, you limpy lumpy bunch, and I hope all of you had a great holiday and a great New Year!
Best!
Peter Leland <leland247@aol.com>
Arlington, Vermont USA - Sunday, January 17, 2010 at 21:37:32 (GMT)
Direct Amputee Supply
Looking for a fitting sock at a reasonable price along with other items you use every day? Then stop on by
www.directamputeesupply.com
Our 1-Ply Prosthetic Filler Socks are manufactured right here in
the United States and are an excellent value for those requiring
additional socks to fine tune your prosthetic socket fit.
We also offer Prosthetic Sheaths which offer friction control as well
as wicking away moisture. We have been able to secure a
relationship with the manufacturer and are bringing these items direct
to you and at a reasonable value by bypassing two levels of
distribution. Direct to you is our goal.
Our deodorant products are Natural and free from perfumes and
chemicals. Available in a stone, easy to use roll-on, and powder
forms, this is an excellent choice for deodorant care without the
chemical irritation to the skin.
Stop by our store at
www.directamputeesupply.com
Join our mailing list and let us know what you think and what you’re looking for.
10% off special on all products through 01/31/2010 and free USPS Parcel
Post shipping on orders over $35.00 gives you even more value.
We would also like to give our thanks to those that have ordered in the
past as we are looking forward to hearing from you again.
Thank You and Happy New Year,
Your Friends at DAS (Direct Amputee Supply)
Ted Nachbar <ted@directamputeesupply.com>
USA - Tuesday, January 12, 2010 at 16:44:04 (GMT)
Mary Base in Kansas City, Missouri...
There is a support group in your area. To find it contact the Amputee Coalition of America at:
http://www.amputee-coalition.org/
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, January 08, 2010 at 14:28:14 (GMT)
Subject: How to help someone facing an amputation?
My father, now 78 years old, is facing an above-the-knee amputation.
He fell and shattered his right knee and part of his tibia in 1998.
Now, after two artificial knees and a fused leg, he has an incurable
infection and the doctors are recommending the amputation.
He is a widower and I live with him now so I would like to move from
this position of fear and grief to a stronger, more supportive role.
Where do I start?
Is there a support group for someone like me in Kansas City, Missouri?
Thank you!
Mary Base <mary@truckmovers.com>
Kansas City, Missouri USA - Friday, January 08, 2010 at 14:24:41 (GMT)
Hello...
I haven't written in a long time. I have been in bad shape.
An incompetent Physical Therapist had me on a resistance program.
That prograsm tore ligaments, muscles, vessels & nerves from my femur.
My stump swelled to 21 inches & put me back in the hospital.
My rehab progress has been set back 6 months to 1 year.
If you know of a light weight used WHEELCHAIR for sale, could you let me know?
Thank you!
Blessings to you & yours.
Michael Twitty <michaeltwitty@gmail.com>
USA - Saturday, November 21, 2009 at 15:58:37 (GMT)
Hi, I am a right leg (above the knee) amputee and i wondered if you would be so kind as to answer a question for me.
If so, here it is.
My leg was amputated 5/19/02 and i am trying to learn to use my
prosthetic. My problem is the severed nerves in my stump. My leg stays
asleep and feels like it weighs fifty or more pounds. I am trying to
get some information about this problem.
I don't think I will ever learn to use my prosthetic properly with this problem.
Did this happen to you and if so, how long did it last?
Did you overcome it?
I would appreciate your input.
Thank You
(606) 325-6472
Robert L. Booth <bobandsue4144@windstream.net>
USA - Monday, November 09, 2009 at 01:43:35 (GMT)
Luci somewhere in Arkansas...
Below are our guidelines for funding.
Eva Barr...Barr Foundation
The Barr Foundation Amputee Assistance Fund was established in 1995
through grants from the Barr Foundation. The mission of the fund is to
provide assistance to amputees that cannot afford limbs, have no other
financial resources, and to promote quality prosthetic care for all
amputees. This is accomplished directly by providing reimbursement for
materials and maintenance costs to prosthetist that provide limbs to
amputees who have no other source of funding. This program is a
cooperative effort between the Fund and the amputee's prosthetist to
improve the quality of life of the amputee.
Benefactor sponsorships maybe also made available to those amputees
whom have individuals, churches or business organizations to make tax
deductible donations to the Barr Foundation whose funds can be
specifically utilized for a select applicant.
In order for the amputee to receive an application, they must
contact a board certified or state licensed prosthetist that may be
willing to sponsor them.
See:
http://www.abcop.org for a directory of American Board Certified practitioners in your state.
The prosthetist ,considering sponsorship, must request the application directly from us by call 561-394-6514.
It is suggested that the amputee be evaluated by the prosthetist that
may be sponsoring him/her, prior to them requesting an application in
the amputee's name. Please provide the prosthetist with the amputee's
name, address, date and level of amputation and telephone number.
At this time bilateral amputees are not being processed for funding
unless another source of funding from an individual(s) or
organization(s) is participating to share equally in the reimbursement
level as outlined in the application.
The Applicant will be reviewed and interviewed for the screening
process by one or more members of the review committee upon submission
of the application, which is to be completed by both amputee and
prosthetist. The applicants will be considered based on need, first
time for prosthetic rehabilitation, age and general health conditions.
Sponsoring prosthetist must accept our reimbursement levels as payment
in full and provide a six (6) month warranty for adjustments and
components used.
First time amputees will be required to receive gait training as a
condition of the approval by the sponsor, physical therapist or other
qualified personnel at no cost to the applicant.
The application must be completed within 30 days and returned to us
with a $25.00 nonrefundable application fee. We will then have 4-6
weeks to process the application and the prosthetist will be notified
as to approval or denial. If the application is not received within the
30 day period of sending the application it will be cancelled and the
prosthetist considering sponsorship will have to resubmit.
We will request that proof of denial of any other funding resources be provided at the time the application is submitted.
Most likely the patient can qualify for Medicare/Medicaid funding.The prosthetist can help you determine that.
Thank you for your interest, if there is anything else we can do, please e-mail or give us a call at 561-394-6514
Sincerely,
Eva Barr
Barr Foundation
www.oandp.com/barr
www.ertlreconstruction.com
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, November 08, 2009 at 20:56:22 (GMT)
My fiance recently lost his Rt. arm AND leg in a motorcycle accident on 9/12/09.
He is finally out of the hospital and recovering very well.
We are desperately trying to obtain information on any possible
help to get his prosthetic limbs paid for. Any help at all would be
wonderful.
I have been told that there are certain agencies that help to get
prosthetics paid for, but I have no idea where to begin to look.
Does anyone have any information regarding financial aid for prosthetics?
He really feels less than a man right now and needs to get at least
a leg so that he can stand on his own and take care of himself and his
family again.
Thank you to anyone and everyone that could give us any information
at all, I pray for each and every amputee, their friends and family
members.
God Bless us all.
Luci Taylor <lucitaylor1970@sbcglobal.ne>
Arkansas USA - Sunday, November 08, 2009 at 20:49:08 (GMT)
H. Schwartz in Green Valley, AZ...
That is a new one to me.
Does the A/K prosthetic device fit comfotably without causing pain?
Pain can cause nausea. Other than that I am at a loss as to explain
your husband's problem unless when he attempts to walk he feels so
unstable that panic causes the nausea.
I'm sorry that I have nothing better to offer.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, October 15, 2009 at 22:02:31 (GMT)
My husband is finally out of the hospital and starting rehab. He had to have an A/K amputation.
His leg is in and he has started Rehabilitation to learn to walk with it.
He has been having some problems and I wanted to know if anyone else has had this problem.
It seems when he is wearing his leg and has it on to do his rehab.
or just puts it on to get use to it afterwards he gets really
nauseated. He seems to get really sick.
Is this normal?
Will he just have to get use to using the leg?
The amputee clinic seems to have never heard of this or at least
doesn't know of anyone else that has ever complained about this
particular problem.
Any ideas?
Appreciate it!
H. Schwartz <schwartz1@cox.net>
Green Valley, Arizona USA - Thursday, October 15, 2009 at 21:56:00 (GMT)
I
have written you before regarding my husband and his troubles with his
prosthetic leg, which have never ended, always something is wrong.
For his phantom pain he was given neuronton pill medication for this,
and it does help some, but I saw an advertisement for Neuragen PN. I
asked the pharmacist to order it for my husband.
It is $30.00 for 0.17oz, very little liquid and you put 2 drops on the affected area, and spread it around.
He is above the knee. so he puts it on his stump and it WORKS....
It will last a long time (especially all through the night) and is great as far as he is concerned.
It does have a strong odor, they say floral, but it is very very
strong, and if you can get past the smell and use it, I think it would
be worth the trouble.
It is homeopathic, so it would not interfere with any oral medications you take. It is a good thing. FYI.
Please pass this on to the others, maybe it will help someone else.
PS: If you google it, there is a $5.00 coupon you can use on it also.
karen woodard <klw1946@hotmail.com>
Friendship, Maryland USA - Monday, October 12, 2009 at 02:24:12 (GMT)
Corey Colagrossi in Kathleen, Georgia...
Congratulations...you are finally out of pain and on your way to a "normal" life relatively free of pain & anxiety.
The ERTL Procedure has saved the sanity of many an amputee because as
you now know the ERTL surgical propcedure is the only procedure I know
of that properly prepares the residual stump for a well fitted
prosthetic limb.
I suggest you investigate FREEDOM INNOVATION'S Renegade Foot for
your prosthesis. I have used one for the past two years with out
breakdowns. This foot allows you to walk easily over uneven terrain and
up and down inclined planes.
Please keep us informed as to your progress.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, October 11, 2009 at 01:21:08 (GMT)
Hey Dan ...
Just wanted to let you know that I got the amputation!
I emailed you a long time ago about being in a motorcycle
accident and hurt my leg badly. The Doctors wanted to keep working on it even after 9 surgeries.
I got a hold of Dr. Jan Ertl (who you recommended) who now works
along side the Doctor that originally did the surgeries to my leg. He
talked with my old Doctor and they both agreed.
I had the amputation September 25th 09.
It took ten hours.
He said they could have done all kinds of surgeries and it would have
only made things worse. The damage was just too bad. He said the scar
tissue alone would have given me pain for life.
So, now I am a right leg below knee amputee.
I also wanted to share with you a website I have that I have put an
advertisement to your website on. It's t-shirts and more for amputees.
All profits are donated to the Barr Foundation. These are really funny
shirts. They help people who are becoming amputees and are great at
breaking the ice for those that are not.
http://www.zazzle.com/coreycola
I want to thank you for your advice and sharing your story with me. It
really helped me in a very difficult time with a very difficult
decision.
God bless you!
Corey Colagrossi <gunnertcm6@yahoo.com>
Kathleen, Georgia USA - Sunday, October 11, 2009 at 01:08:18 (GMT)
I live in Covington, Indiana and my prosthesis is from Action Brace in Indianapolis.
I know it is a drive for you, but he also comes to Crawfordsville,
every other Thursday. it saves me an hour and a half drive.
I've been a B/K amputee for almost three years due to a MRSA infection
that nearly did me in, shut my kidneys down and had me wondering if i
was going to make it.
The only problem I have ever had is when my stump atrophied and I had to be refit. That was 2 yrs ago.
I still work a 40 hours a week at Home Depot and I'm on my feet most of the day. Never had a problem since the refitting.
Kevin Hagemeir is the name of my prosthetist and he does a great job. I highly recommend his work.
I really didn't know having one leg would hardly be any trouble.
The only time I had a bad pain is one night when I got up to use the
potty and walked into the bathroom in severe pain in my stump. Imagine
my surprise when I turned on the lights and saw no toes!!!!
I had put my leg on backwards.
I was laughing so hard I woke up my wife.
Ha HA HA!
Enough rambling---I hope this info helps, and to all the other gimps out there let me leave you with this...
As I lay in dialysis one day feeling sorry for myself I saw them carry
in a lady with no arms or legs. At that moment I decided that I did not
have the problem. I thought I did and I would never let it bother me
again.
Since then I have been having so much fun and enjoyment out of life----I did not know one leg could be so much fun.
Call or email if you need to talk.
Cheers and good luck to all!
Mark Quigley
Covington, Indiana
765-585-5513
Mark Quigley <bigquigdarts@yahoo.com>
Covington, Indiana USA - Tuesday, October 06, 2009 at 13:19:18 (GMT)
I am a 43 single mother of an 18 daughter. I have been an lpn for more than 16 years....
I got in an accidnet less than 2 miles from my house on a speed trail to get home after 2 dbls.
To work dayturn next day....needless to say, the Readers Digest SHORT
verson, I am on my 4th socket, and putting in for a "C" leg....
I am a world of helping people...as my mother always sez "I am an
ordinary person, WHO HAS SEZ AND DONE VERY EXTRORDINARY THINGS"
Call me at my house phone, (724)588~6499
...cool? cool!!
x0x0x0x0
Lynnie <tormafish@hotmail.com>
USA - Thursday, September 10, 2009 at 20:31:17 (GMT)
Dear Jennifer Cole...
Have the amputation!
In my opinion the removal of your painful limb may indeed cause you to be free of RSD since RSD is usually a local condition.
To give you the best possible outcome I suggest you have your Orthopedic Surgeon perform an ERTL Procedure.
The ERTL Procedure buries the nerves & tendons in the soft tissue eliminating in most cases Phantom Limb Pain.
I also suggest the amputation be at least 6 inches below the knee
in order to properly prepare the residual limb for a prosthesis.
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, September 04, 2009 at 13:32:04 (GMT)
I made a post a few months ago about having a lisfranc injury.
I was misstreated.
I didn't get proper treatment until 3 months later. My foot had 6
screws placed in to help realign my foot. All screws have been removed
and I am still in alot of pain.
I have asked my doctor to amputate and he has agreed. I was also told
that I have RSD. My concern now is that if I do amputate will the RSD
attack my stump?
The only way I will go through with the amputation is if I know
that it will add to my quality of life I have lost which has been a
lot.
I am going back and forth with this decision.
My family and friends think I am crazy for even considering this.
I change my mind every day and worry about what my future might hold.
Please email me back with what you think...thank you.
Jennifer Cole <Jennifer.Cole@selu.edu>
USA - Friday, September 04, 2009 at 13:19:58 (GMT)
Hello,
I am looking for help for my wife.
She is a BKA from an accident when she was 4. She is now turning 40 and
for the last many years she has had more and more problems with her
prosthesis.
Hers is such where she has a ball where her ankle is and is without a foot.
From what I have read it is just as I have told her for years. It falls back on the technician making her foot.
She has had it such a long time and was always been active with it.
So after child birth she just figured it was her fault that it doesn't
always fit right. She has such trouble walking at times.
So with this information I would like to find her someone that can make her a prosthesis that won't cause her such troubles.
We are in the South Eastern part of Illinois so if anyone would know a
good lab in the area I would love to surprise her with the information
and maybe an appointment.
Thank you all very much!
Jeff Hawkins <murdish@hotmail.com>
Lawrenceville, Illinois USA - Thursday, September 03, 2009 at 03:05:49 (GMT)
Hi...
My name is Sarah. I'm posting for my boyfriend, Brad, who lost most
of his left foot (Chopart) in a motorcycle accident in November.
We are having a hard time with finding a good prosthesis.
He is young (31) and was very active--soccer, biking, climbing--and
would like to be still. He is still playing the drums in two bands
though. walking is painful after a short time and running is very
difficult.
His prosthesis is crap, the zipper broke the first week and he has had
no follow up care (Though I don't know if that's his fault of not).
We would love to be able to find some info and support for both of us.
He is in DC and I am in school at UNC-CH. Either place would be good to find help b/c we go back and forth.
Sarah Rosner &
Brad Fullilove
iolanikona@yahoo.com
bradfullilove@gmail.com
Sarah Rosner <iolanikona@yahoo.com>
D.C. USA - Tuesday, September 01, 2009 at 02:31:38 (GMT)
Michael Twitty in Antioch, CA...
Apology accepted.
What are you apologizing for?
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, August 27, 2009 at 19:18:15 (GMT)
Dan & Friends......
My apology to all.
I live in Antioch, CA
Had rt leg off about 6 inches AK on aug 10th.
Still in convelesceny hospital.
Thank you all!
Michael Twitty <michaeltwitty@gmail.com>
Antioch, CA USA - Thursday, August 27, 2009 at 19:15:36 (GMT)
First off, I appreciate the humorous title of your organization, it fits right in with my mindset.
I'm currently preparing for an above the knee amputation surgery at the
end of September and have been looking through a list of support groups
in the area (I live in Fremont, CA).
I tried to contact a group in Fremont, but no one is answering their
phone. Basically what I'd like to do is either attend a group meeting
or speak with someone over the phone so that I can ask a few questions
about the process.
I'm having consultations with the surgeon and prosthetic doctor next
week, but I also have some anxiety about the more practical issues that
I thought someone who'd been through might be able to help me.
Questions like what parts of the recovery were easier/harder than you
anticipated?
While recovering, and before you got your prosethesis, how did you get
around if you had to get up in the middle of the night to use the
restroom? How quickly were able to get accustomed to the prosthesis so
that you walk around fairly safely?
As far as my background, I'm having the surgery due to side
effects of radiation treatment. I had a knee replacement last year due
to cancer in the knee and was recovering fairly well. But a few months
after having radiation treatment, fibrosis set in. Fribrosis is a
stiffening of the tissues that can affect radiation patients to
differing degrees. Unfortunately, I was very susceptible to the
radiation and now my knee barely bends at all.
I've been on crutches since April, am taking a lot of pain medication,
and have difficulty being on my feet for too long without having a lot
of swelling and an increase in the pain. As a result, I'm opting to
have the amputation because getting a prosthesis will end the pain and
give me my quality of life back.
I know it won't be easy, but its far better than what I'm living with now.
Anyway, if there is someone who would be willing to talk with me
over the phone who has experienced an above the knee amputation, I
would really appreciate it. Or even someone who has had a below the
knee amputation could probable answer many of the questions I have.
I can be reached at 510-792-9503 and my home email address is
sjmather@sbcglobal.net (feel free to use my work or home emails).
Thank you!
Scott Mather <Scott.Mather@doj.ca.gov>
Fremont , CA USA - Wednesday, August 26, 2009 at 23:40:53 (GMT)
George D. Csaba in Rochester, NY
I really don't know what to say.
How about a LEE press on nail kit from Walgreen's and some Krazy glue?
Wayne Koniuk, C.P. <limbart@sbcglobal.net>
San Francisco, CA USA - Wednesday, August 26, 2009 at 13:06:19 (GMT)
George D. Csaba in Rochester, NY...
The world has just opened up for you! There are so many opportunities that I hesitate to list them here for you.
You are unique!
Motion Picture Directors and Television producers are always on the
lookout for new & unusual talent. Missing a part of a thumb is VERY
unusual...if I were the producer of the show TRAUMA or ER I would
hustle to get you under contract immediately.
The world is your oyster.
While waiting for your big break in show business you can always
work at jobs that other unemployed actors fill...waiter, super market
cashier, stock boy (that is what NFL star quarterback Kurt Warner did
before winning a Super Bowl for St. Louis).
The opportunities are endless!
If you do suicide you will never know what could have been. What a lucky break to have lost a part of your thumb.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, August 26, 2009 at 00:00:20 (GMT)
My
injury is nothing compared to some of the losses that I've read in
here. In February 2009, I lost the tip of my thumb due to an accident
with a power tool.
Most of you feel very positive about life.
Not in my case.
Since that day, every single day it has been a misery, a disappointment.
I cannot accept the fact that my thumb doesn't have a finger nail, and that it looks the way it looks and the way it feels.
Most people say I'm very lucky, and that it's not that bad.
I don't really care about life anymore. I was on disability for 2 months.
I went back to work and on the same week they fired me. Of course the
reason wasn't because of my thumb, but due to the economic down fall.
Anyway, now I don't even know where am I gonna work. I was an assembler, now I think like I'm done.
I thought about suicide many times. The problem is that I would rather die then to put up with a missing body part.
Counseling did not help me, I am crazy as it is, there is no help for me. My life seems like it ended, for good.
I know I sound very negative, but this is how I feel.
George D. Csaba <kispajtas@hotmail.com>
Rochester, New York USA - Tuesday, August 25, 2009 at 23:46:29 (GMT)
Hey fellow gimps.....
As new (ABN) you are my kind of one leg wonders or how many pieces that left us.
Stumps 'R Us, have had many lafs with that.
My Mr Happy left town on 8/10/9.
Look foward 2 contact, news letter & meeting other gimps. We can count the missing parts.
Oh yeh. Been busted for...exibition of speed. Great!!!!
Hang on 2 what's left.
michael twitty <michaeltwitty@gmail.com>
Somewhere, USA - Monday, August 24, 2009 at 12:29:41 (GMT)
Jerome Miller In Lima, Ohio
You are my hero & role model!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, August 12, 2009 at 02:13:46 (GMT)
My story begins like this....
April 12, 2007 started out like any other day. I went into work (a
steel manufacturing factory) to start my day as first shift team leader
in charge of four progressive presses and transporting steel coills. I
was at the ripe age of 31 years old, going through a divorce, and
trying to climb the corporate ladder. Little did I know, not even an
hour later, that tragedy was lurking around the corner. I walked over
to the overhead crane to have it pick up a coil and move it to a press.
The very next thing I realized was that I was in the hospital and it
was three weeks later.
Luckily my family and friends were there to support me and answer some
of my questions. I think the biggest question that I had that needed
answering was "Is my right arm paralyzed". My mom and one of my sisters
were there to answer me by saying "Sorry but the doctors had to take
your whole right arm to the shoulder to save your life". See, my right
arm area was wrapped in bandages, so i couldn't see if my arm was there
or not. I still to this day, "feel" my arm still there (or most of you
would know it to be phantom pains).
I was told (even though there were no witnesses to the accident)
that I was trying to move a 10,900 pound steel coil, about 6 feet tall
of steel to a prog press. During the process of trying to pick the coil
up with the overhead crane, the coil tipped over causing the coil to
fall onto the right side of my body. With all the force of the coil
fall, my intestines went to my left side of my stomach causing me to
have a hernia. I also sustained a broken right foot, a broken right
femur, total amputation of my right arm, and three broken ribs.
I spent 6 weeks in the hospital and 6 weeks in a rehabilitating
nursing home. Mind you I was the youngest resident/patient there!!
While in the nursing home I had to learn to walk again and to write
left-handed. So after 3 months I was back home, learning do everything
with one arm. A great thing happened to me, I saw my future wife while
at the rehab nursing home. Later I met my future step-daughter. My
future wife and I started dating at the end of August/beginning of
September 2007. We got married on January 16, 2009. She's the most
beautiful, most caring, most loving, most understanding mom/wife that
I'm glad I'm married to. I Love You My Love!!!
A week before Thanksgiving in 2007, I was given a myoletric
prosthesis to try to "replace" what once was there. I would try to wear
it as much possible but I have an enormous amount of pain on the left
side of my stomach where the straps go to be attached to the
prosthetic. About a month ago I went to see a surgeon about my stomach
pain and he told me that I have had a hernia (where the pain is) for 2
years and 4 months now according to the CT scan in 2007. Amazing huh?
None of the other doctors, that I saw, would do anything for my pain.
The other doctors I saw on this matter said there was never anything
wrong with me.
I treasure life day by day. I come across obstacles everyday.
Before my accident, I rode my 1979 Harley Davidson Lowrider, I went
fishing, I played video games, I hugged with two hands, and did the
normal stuff that anyone with 2 arms and 2 hands would do . I realize
my life has changed, not only physically but mentally too. But one
thing I HAVEN'T done is GIVE UP. When It comes to kids seeing my
missing arm they make it known that it isn't there. I think it's funny
that they say it out loud that my arm is gone. Followed by a SHUSHHHH
from their parents.
February 16, 1996 (Friday) is another important day for me. That
night I was rushed to the Emergency Room by my parents because I was
having a hard time breathing. Early the next morning I was approached
by the doctor telling me that I had a mass in my chest the size of a
softball. The doctor said the best thing for me, was to go home and
come back on Monday. I came back on Monday alright, but it was in an
ambulance. It turns out that that mass in my chest was a tumor (cancer)
that grew from a size of a softball to a football size in three days.
Being 20 years old and having cancer was a very devastating and very
emotional time for me. I went through 3 biopsies that I nearly died
from and one radiation treatment (thankfully). The doctors realized
that the tumor wasn't decreasing by the radiation so they stopped that.
The tumor at that point was renamed to a very rare type known as Germ
Cell Cancer (a.k.a. Testicular Cancer in my chest). The cancer was
wrapped around my heart, lungs, and esophagus. Lucky me, huh? The only
option for me for eventually removing the cancer was to do
Chemotherapy. So for 6 months-8 hours a day-5 days a week, that is what
I did. I lost my hair, vomited, and cried everyday due to the chemo. I
was 20 years old, I didn't want to die before my 21st birthday. I
appreciate that I had your shoulder to cry on during my cancer
treatment (Love You Mom).
One week prior to my 21st birthday the cancer was removed. I have been cancer free for 13 and a half years now.
Thanks to all for reading.
May God Bless You All!!!
Jerome Miller <jojo.maddy.and.me@gmail.com >
Lima, Ohio USA - Wednesday, August 12, 2009 at 02:12:10 (GMT)
Meranda Prediger in Alberta Canada
You are doing the right thing!
You are correct in not listening to the MORONS who are telling you
that you are "off your rocker" in looking forward to the amputation
that will return a normal life to you.
My wife Jody & I returned today from a 4 day trip to Oregon
& Washington State where I piloted a Beech Sierra in all weather
conditions for 18 hours landing in all airports in the San Juan Islands
beginning with Friday Harbor.
I have been an amputee for more than 40 years. It has not stopped
me from doing ANYTHING...it won't stop you from doing anything either.
The best surgical procedure I know of is the ERTL Procedure. It is described elsewhere on this web site.
I highly recommend it!
The very best of luck in your return to a normal life!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, August 06, 2009 at 16:05:50 (GMT)
I am a 31 year old single mother of four and am facing above knee amputation of my right leg.
I was in a car crash (refuse to call it an accident as the other
fool could very easily have avoided causing it, lol) five and a half
years ago.
The trauma of the impact caused trauma induced osteo arthritis in my
right knee. Several surgeries were attempted in order to "fix" my knee
and help me to regain mobility and control pain and swelling. None of
them worked in the slightest, my knee continued to worsen at an
alarming rate.
Due to one of the surgeries that included bone grafting I developed
osteomylitis in the distal head of the femur, the patella and the
proximal head of the tibia. I have been battling the infection since
January of this year with little success (IV antibiotics for six and a
half months does one no good whatsoever!) and have had four more
surgeries in that time (Jan. 25, Feb. 19, April 20, July 9).
The ortho I had for the first three surgeries this year refused to
amputate saying I am "too young" even though he was the first to say he
does not believe my leg can be "fixed" and that I will never walk on
this leg again. He seems to think that a single mother with young
children (youngest is 3) should be perfectly happy to have a useless,
painful leg dangling at her side while she hops around on crutches.
The new surgeon, the one around for the most recent surgery agrees that
nothing can be done to make my leg work again. He said the bone,
tendon, ligament and nerve damage caused by both the initial injury and
the infection is beyond repair. He recommends amputation (expected to
be performed in the fall) after I heal from this last surgery. He wants
to see the infection under control first so that the stump doesn't
become infected as well.
I have very mixed emotions regarding this. I am very nervous about the
surgery and everything that will come after it, but I am also looking
forward to at least having the chance of real mobility again.
Every group I have found so far seems to think I am off my rocker for
not being terribly upset about this impending loss of limb. Everyone is
telling me how hard it will be emotionally, how much I will grieve the
loss of my leg, how much I will regret this, etc. I was relieved to
find your page and read your little blurb about how you lost your leg.
I have so many questions that, though I could ask my doctor, I would
prefer to get the answers from actual amputees.
I am not in California, in fact I am in Alberta Canada. I hope that I
will still be able to pester you from time to time. I know this will be
a huge change, though I foresee it being a predominately positive one,
and I am very nervous.
I used to be such an active person (snowboarding, mountain biking,
motorcycle riding, swimming - competitive, even rode dressage!) and I
have dearly missed these activities, but I don't even know if I should
expect to be able to do any of them again.
In all honesty, I will be thrilled if I can walk again and work. I
haven't been able to work since the crash and am sick of being poor.
Meranda Prediger <merandap@hotmail.com>
Alberta, Canada - Thursday, August 06, 2009 at 15:54:33 (GMT)
Joy Hibbets in Oklahoma...
San Francisco Prosthetics Certified Prosthetist Wayne Koniuk has this suggestion.
"If she was cast over the liner, this can turn the leg into a cylinder with no definition around the skeletal shape of the leg.
If presented with this problem I would recommend a 0 or 1 ply check
socket fit, without the liner, that will catch the real shape of the
leg.
The liner can then be added on the model before the socket is made
increasing the volume the correct amount to maintain the same shape and
volume as the test socket".
Dan Sorkin <DanSorkin@comcast.net>
San Francisco, CA USA - Friday, July 24, 2009 at 12:10:01 (GMT)
Hello!
My husband & I were seriously injured in a motorcycle accident September 2, 2007.
To make a long story short we both lost our left legs below the knee!
We both received our prosthetics in December of that same year!
My husband has done extremely well with his, however mine is a different story!
I use the pin locking system & socket & the Alpha Liner &
use the Proprio Foot (my husband uses the same set up)! I have alot of
trouble with my prosthetic "toe-ing in" as the day goes on! My socks
slide down as well! No matter how many socks I put on, it's just a
matter of an hour or so till I'm fighting the problem again!
It's weird becasue when this happens, I can remove the liner & put
it right back on, and put on less socks and everything fits great, but
then after an hour or so, its back to everything sliding down &
toeing in (it's almost like my stump is also sliding down further as
well)!
I've tried smaller liners, having new sockets built, adjustments.....I
even had a "revision" done on my stump in April of 2009 and the doctor
removed about 5 inches of loose skin! I don't have much loose skin now
but still having the same problem!
Can anyone give some helpfull info??
Thanks
Joy N. Hibbets <kjhhibbets@cableone.net >
Oklahoma USA - Thursday, July 23, 2009 at 16:38:22 (GMT)
JD Moore in Milpitas, CA ...
I suggest you mail your prosthetic devices to:
San Francisco Prosthetics
Attn: Certified Prosthetist Wayne Koniuk
324 Divisadero Street
San Francisco, CA 94117
Wayne Koniuk leads a team of Prosthetists every year into 3rd World
countries fitting amputees with donated appliances like yours.
Your donation may save a life.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, July 15, 2009 at 21:40:20 (GMT)
My
father (a veteran) had a BTK 2 years ago. He recently passed away, and
we have supplies (used but sterilized and in like-new condition).
We'd like to donate to someone who could use them.
Included are 2 drying stands, several stump socks, etc.
Because of health regulations, organizations & clinics can't accept these items.
Anyone know of an amputee support group in the Silicon Valley area
that we could offer these to? (Having no luck looking on-line!)
Thanks!
JD Moore <kittyshrink@hotmail.com>
Milpitas, CA USA - Wednesday, July 15, 2009 at 21:33:54 (GMT)
Johnette Oman in Reno, Nevada...
Use this link to navigate to the ONE SHOE CREW. That is their job!
http://www.amputee-coalition.org/fact_sheets/oddshoe.html
Thank you for contacting Stumps 'R Us!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, July 08, 2009 at 00:10:46 (GMT)
I
live in Reno NV. I'm a polio survivor and have to buy 2 different sizes
and widths of shoes. I usually just throw away the one I don't need.
Nordstroms has a split shoe size program and told me they donate the 'extra' shoe to programs who help amputees.
I don't know why I didn't think of that all these years!!!!!
I have 2 right 8 wide and 2 left 9.5 medium width Ryka womens tenny
shoes I would like to donate to someone in the Reno/Sparks NV area. Any
ideas of how to get the info out there?
Johnette Oman <johnette_o@hotmail.com>
Reno/Sparks, Nevada USA - Wednesday, July 08, 2009 at 00:06:08 (GMT)
Monica Langefeld,
I don't know about the food Dan Sorkin recommended, but I wholeheartedly endorse the Genesis II+ foot from MICA Corp.
I am a RAK and was out doing yard work this weekend, and still can't
get over how well this thing flexes on oneven terrain, both
forward/back and side to side. It was so much better than the foot I
originally had that was more like a brick to put my shoe onto.
Good luck.
Richard Morgan <Richard.Morgan@steelscape.com>
USA - Tuesday, July 07, 2009 at 21:56:35 (GMT)
Monica Langefeld...
The foot you are looking for in order to walk easily and gracefully
on uneven surfaces, sand, inclined planes and cobblestones is the
RENEGADE FOOT from FREEDOM INNOVATIONS.
That is what I use and have for the past three years,
I have yet to take it back to be refurbished or adjusted by my
Cerified Prosthetist Wayne Koniuk of San Francisco Prosthetics who
recommended it to me.
Welcome to my world free of pain and not walking like a duck!
Dan Sorkin...Chief Stump <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, July 03, 2009 at 17:49:50 (GMT)
Dang!
I need some of your magic or at least your insight and knowledge.
Congenital deformity of right leg from knee down, generally termed
as a type of club foot...operated on 6 times to make it "socially and
cosmetically" acceptable, walked like a waddling duck due to 3 inch
length discrepancy, yada, yada, yada...
31 years later took a wrong step off a curb and heard a pop....
that was April...the leg came off 4 days ago and I feel guilty feeling
so happy about it.
I don't know where to look for support, feet or anything! Can you advise please?
I want to walk, on the grass, on the beach, I want to finally touch the ocean!
Monica Langefeld <mlangefeld@cox.net>
USA - Friday, July 03, 2009 at 17:42:08 (GMT)
We
just opened our new online store a few short weeks ago and attended our
first Amputee Coalition of America conference held this past June.
Let me introduce myself. My name is Ted Nachbar and my company's name is Direct Amputee Supply, LLC.
Being involved with the wholesale distribution of prosthetic supplies
to amputee’s practitioners for nearly fourteen years, I decided it was
time to bring some of those items directly to the amputee at a more
reasonable cost.
My field of expertise includes an item that I had patented for use in
prosthetics along with the ability to provide service and technical
support on many items including hydraulic knees, manual knees,
prosthetic pin locking systems, and many materials used in the building
of prosthetic limbs.
I recently joined the Amputee Coalition of America, a national
organization that provides much needed peer support for amputees as
well as litigation for amputee rights.
My new ecommerce website, www.directamputeesupply.com had our Grand
Opening there and we were able to showcase some of our items to the
patrons.
Our on-line store consists of carefully selected items that the amputee
can easily order and replace on their own without having to go through
their practitioner.
The store's main focus of operation is to save the amputee valuable
time and money while supporting their needs with replaceable products
such as socks, deodorants, skin care products and comfort aids. We plan
on expanding our product line and with your help, we'll know what you
are looking for.
Until next time, check out the website and let us know what you think!
directamputeesupply.com
Ted Nachbar <ted@directamputeesupply.com >
USA - Wednesday, July 01, 2009 at 03:10:07 (GMT)
I
am a recent foot amputee and am having a very difficult time with it. I
would like to be around people who understand the feelings i'm having
and be a support for them as I hope they can be for me.
Thank you!
Carol Montag <cdmlaff@yahoo.com >
USA - Wednesday, July 01, 2009 at 02:59:34 (GMT)
Greetings Candace & Mary Martin:
I don't know anything about all the life challenges and complications
which your amputation has caused, but only wish to offer some
encouragement based on my own experience.
I was over 40, single (never married), running my own professional
photography business by myself (sole means of support), living alone
and with no family members within thousands of miles, when a driver who
ran a stop light caused an accident necessitating the amputation of my
right foot a few days later.
I was in 3 hospitals (sequentially) for 9 days. A half week after I
came home, I did a portrait of a client in my studio standing on my one
remaining foot and supported by Lofstran(spelling?) crutches. While in
my hospital bed, I also negotiated a photographic contract (executed by
two photographers I hired over the phone for the job) using the free
phone they gave me to use in the hospital. The income from that
contract paid my next month's studio rent.
The amputation caused all sorts of complications in my active and
independent life. However, as soon as possible (when my leg finally
healed enough), I went to a prosthetist and was filled for a new
below-the-knee leg and foot.
Now (it's been over 10 years since my accident) I not only walk,
but dance and hike and ski (with a knee brace)...And, when I walk, most
folks have no idea whatsoever that I am an amputee.
Although at the moment you may have lots of obstacles to overcome
due to your amputation, you are still alive and have a choice as to
whether you see your glass as half empty or half full: i.e., you can
focus on your loss, or on what you still have left.
I truly hope you shall find ways to "start living again"....Keep in
mind that your attitude will play a huge role in your future!
As my Latin teacher brother reminds me in his emails, "CARPE
DIEM"!!! (i.e., as the Romans said hundreds of years ago, "seize the
day!")
Best regards
M. Christine Torrington <christine@sfphotopro.com>
San Francisco, CA USA - Sunday, June 28, 2009 at 18:56:53 (GMT)
I'm a 52 year-old female and recent amputee (Right leg aka) looking for a support group.
I guess I'm handling this all right except for the almost every day little crying jag I have for one reason or other.
Sometmes because I feel like my life has totally changed and I'll
never be able to do the things I used to do - I can't even keep my
house clean.
Sometimes because I don't know what to expect and it scares me.
Anyway, here's my info:
Mary Martin <mebdm1956@yahoo.com>
Whiteside, TN USA - Sunday, June 28, 2009 at 18:50:09 (GMT)
Dear Jason Koger,
You are an inspiration.
http://www.youtube.com/watch?v=vF7aqvtVhj4
So is your wife. Your family & the world are fortunate to have you & your story of courageous optimism.
You are my role model!
Sincerely
Dan Sorkin
www.stumps.org
Chief Stump
Fight organized crime.
Don't re-elect anyone.
…anon.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, June 27, 2009 at 21:12:37 (GMT)
My name is Candace Blanton
I had a below the knee amputation on my right leg on March 13.
I am not handling it well.
I don't know where or how to start living again.
I have not started physical therapy so I am bedridden. I am scheduled to be "evaluated" on June 30.
Could someone contact me to give me advice?
Thank you!
Candace Blanton <caelfosbl@aol.com>
USA - Wednesday, June 24, 2009 at 12:47:21 (GMT)
I was born missing my right arm just below the elbow.
Growing up as a child I wore a standard hook, but once got highly involved in sports I quit wearing it.
I have participated in every sport that I have wanted to without really
having to modify anything. Now I am really interested in riding dirt
bikes. I know they make the "recklus" auto shifter for bikes, but I am
sharing a bike with my partner and can't make any major modifications.
I have been looking for a prosthetic to help with throttle and holding on issues.
Does anyone have any websites or ideas for me? Anything will help.
Thank you!
Tammi Mahon <Boardchik@aol.com>
Carmichael, California USA - Monday, June 15, 2009 at 01:30:26 (GMT)
I was in a car accident in February.
They say I am a miracle.
I could use a support system.
I am new (lol) at this and sometimes I feel the brave face I put on and other days I don't.
I am a through knee (left) amputee (still weird to describe myself that
way). Many rods, plates, other broken spots and three time brought back
from dead. My amputation was done to save me.
The phantom pain and sensitivity is the worst.
I do o.k. mentally I think. I do bury it, I have no one to talk to.
Currently residing in Wichita Ks. with my sister and her family. Went
from accident in Mt to my mom's in Id to Ks. Hopefully I can get the
help I need and get a leg.
Thank you.
Kelly Danielson <nae_danielson@yahoo.com>
Wichita, Kansas USA - Tuesday, June 09, 2009 at 12:45:41 (GMT)
Amanda Claridge in Salem, Oregon...
Thank you for sharing your story with us.
That sense of humor will get you over the rough spots. It always worked well for me after my amputation in 1968.
You say you can only walk a few steps in your prosthesis.
The problem is easily fixed by a COMPETANT Certified Prosthetist.
The problem you describe comes from an ill fitting prosthetic socket. It should fit like a comfortable old shoe.
Also...
The angle of the prosthetic foot and the length of the prosthetic
leg itself has to match perfectly with your "good" leg. If it doesn't,
back pain and stump abrasions will appear.
You have to be aggressive in demanding a perfectly fitting prosthetic device.
Until I found C.P. Bob Putzi & Wayne Koniuk of San Francisco
Prosthetics in San Francisco I had the same problems you are
experiencing today. They created a perfectly fitting socket, attached
the foot at a proper angle and adjusted the length of the prosthetic
leg until I was comfortable walking.
Today I rarely think about walking with pain...I DON'T HAVE ANY!
Go back to your prosthetist and have him make the proper adjustments for you.
Good luck Amanda!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, June 07, 2009 at 13:29:31 (GMT)
I am a 28 year old right AKA.
I was diagnosed with cancer in my right knee and thigh in November
2008. After chemo and radiation treatments, I had knee replacement
surgery March 5th 2009. They had to do some blood vessel grafting
because the tumor had wrapped itself around all the good ones.
In the recovery room, I lost feeling in my toes and went back in for
surgery to try and save my leg. After a seven hour surgery, the
decision was made to amputate.
I have taken everything pretty well considering the rollercoaster ride
it has been, and somehow still have a sense of humor, joking with the
docs and nurses and naming my tumor after Steve McQueen.
I have my first prosthetic and have now returned to work, but I am
depressed and despairing that I will ever walk more than a few steps. I
know there is a light at the end of the tunnel, but right now I can't
envision myself getting there, and I have a lot of impatience. I have a
great support network through family, friends and coworkers, but there
are things that get to me that only an amputee will understand.
I'd like to talk with someone who had had a similar experience, but any contact is welcome really.
I have a blog at ironrose1980.livejournal.com and I can be reached at ironrose1980@yahoo.com.
Thanks!
Amanda Claridge <ironrose1980@yahoo.com>
Salem, Oregon USA - Sunday, June 07, 2009 at 13:12:37 (GMT)
Hi, my name is Nicki...
I'm having a slight issue. I'm a partial foot amputee and I seem to be
having a bit of trouble finding someone to replace the part of my foot
that I'm missing.
I've tried going to a few prosthetic companies and they seem to want to
make me something that isn't going to be functional for me. I don't
want a device the goes up my leg and straps on.
I have good motion in the rest of my remaining foot. I've done a little
research online and have seen others like me with the exact same
amputation. I've seen where you can get the silicone or something made
that resembles a foot.
I currently reside in the State of Georgia. I'm starting to become
discouraged. Right now I'm currently wearing a walking boot. I want to
get out of this boot because my foot is completely healed.
Is there anyone that can point me in the right direction?
Do, I need to travel outside my area? Meaning to another state?
HELP! It's okay to email me.
Nicki Darling <nickidarling@att.net >
Alpharetta, Georgia USA - Thursday, June 04, 2009 at 16:41:27 (GMT)
Hi I am a 4th year medical student at the University of Manchester in the UK.
I am about to produce an educational DVD for people who are about to have an above or below knee amputation.
In the past all such videos and leaflets have been designed by doctors on assumptions of what people are most worried about.
I am first finding out the specific worries that people have and then designing the video/leaflet with the patient ideas.
If anyone has the time or enthusiasm to help me please get in touch either on here or at
ben.darwent@student.manchester.ac.uk.
It doesn't matter if you awaiting an amputation or have had one in the
past or are just simply knowledgable; any help would be greatly
appreciated.
Thanks
Ben Darwent <Ben.Darwent@student.manchester.ac.uk>
Manchester, England - Wednesday, June 03, 2009 at 17:15:12 (GMT)
Dana Anderson in Florence, NC...
Before opting out for the Dirt Nap I have several suggestions.
1) Find a Certified Prosthetist who can properly fit your stump to
its socket. It sounds as if the C.P. Prosthetist you have today is an
incompetant MORON. There is no reason why the socket cannot be made to
so perfectly fit that you feel better wearing it than not.
2) Type the words MIRROR THERAPY into the GOOGLE search engine
& use it once you find it. It is simply a mirror in a cardboard
box. You will be amazed at how quickly your Phantom Pain either
disappears completely or is significantly reduced after using this
remarkable CHEAP device.
These two simple steps (pardon the pun) will make life worth living again.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, June 01, 2009 at 20:03:29 (GMT)
I
was pleased to find this publication and to see that perhaps I am not
quite as alone as I have felt since losing my left leg below the knee
to a surgical site staph infection.
I ruptured my Achilles tendon in January 2006 and after two years of
fighting this infection it was decided that amputation was the best
option for getting me back to a somewhat normal life. I had lost the
tendon to the infection as well as having significant nerve damage,
leaving my foot almost completely without sensation other than the
phantom pain that had already begun. The pain was and remains
completely indescribable, which makes this website all the more
important since so many others here know of what I speak.
My life now is anything but normal. I live alone now after my wife decided it was more than she could deal with.
I have had my prosthesis for just over a year now and I still cannot
wear it for more than three hours. After a couple of days of using it
it takes a few days completely off it for the pain to subside a bit.
My stump reaches literally two inches below the knee, giving me little leverage in trying to bend the knee.
The doctors at pain management recommend that I seek out another surgeon to take off my knee.
I have always been an active person, earning a good living with my
hands as an electrician. I have also been a drummer in local bands for
the past thirty years before this change.
Since this all began I have gained fifty pounds, further adding to the
pressure and pain in the leg. Facing alienation, an uncertain future,
and constant pain I can't help but dwell on a final option on a daily
basis.
It is nice to read of all those that have faced this with more courage
and optomism than I apparently have, living life with the vigor and
opportunity that I used to enjoy.
I just can't see there from here.
Thanks again for the website and the chance to vent my frustrations. I
just wanted to document my plight in the event I don't survive this
ordeal.
Dana Anderson <blogwiser@gmail.com>
Florence, NC USA - Monday, June 01, 2009 at 19:52:41 (GMT)
Hi! I am a new RBKN amputee.
I have a super narrow foot 81/2 AAAA. My prosthetic foot had to be
shaved down on both sides which included "shaving off the last toe,
part of the 3rd toe and the great toe.
The foot still does not fit most of my shoes.
Does anyone have a suggestion for a better fitting foot apparatus?
Thanks!
Danette Schader <danetteschader@gmail.com>
USA - Friday, May 29, 2009 at 00:03:01 (GMT)
I am Cherryl Abello and my mom is a bilateral above-the-knee amputee. We are from the Philippines.
My mom and dad had a motorcycle accident July 20, 2008. My dad had
multiple fractures and suffered a minor head injury. My mom on the
other hand broke her right limbs in 5 places. She broke her scapula and
she lost both of her legs coz her legs were literally crushed by the
car (a taxi) that hit my parents.
The doctors weren't able to put the legs back together because it was just hopeless.
My dad retired from his work about 6 yrs ago and my mom, who was the
highest-ranking nurse at a big hospital here in the Philippines was
forced to leave her job.
The owner of the taxi company that hit my mom and dad refused to buy
her prosthetic legs because they said that the purchasing of the
prosthetic legs is not their responsibility anymore because they
already settled the hospital bills.
Money is really a challenge for us now. I would like to know if you
know any organization that will sponsor a pair of prosthetic legs?
Have a good day,
Chen-chen ^_^
Cherryl Abello <cherryllyne@gmail.com>
Philippines - Wednesday, May 27, 2009 at 03:18:15 (GMT)
Hi. My name is Peggy...
I am a below knee amputee for 5 years. I've also been a Mommy for 3 years.
I learned quickly that there are very few resources for amputee women
going through a pregnancy and dealing with an infant, and now a
toddler.
I've started writing a blog about my experiences, and I thought that it
might be helpful for other amputees. It also sheds the comical aspect
on what can happen in situations when you are an amputee.
www.amputeemommy.blogspot.com
Thanks.
peggy chenoweth <eyegalster@gmail.com>
USA - Saturday, May 23, 2009 at 13:24:06 (GMT)
Hi Dan!
I am a new amputee (RBKA) and in the prosthesis training segment of my new journey.
Please add my name and information for your web site.
Thanks!
Danette Schader <danetteschader@gmail.com>
Helena, Alabama USA - Thursday, May 21, 2009 at 22:53:54 (GMT)
Hi ... My Name is Jennifer!
I have a lisfranc injury and I am considering having my leg
amputated due to my foot injury. I feel like my life is falling apart
because I am running out of answers. I am in constant pain and can
barely walk.
Please anyone with any information that would like to chat, Email me at Jennifer.Cole@selu.edu.
Thank you
Jennifer Cole <w0224689@imap.selu.edu >
USA - Thursday, May 21, 2009 at 02:45:54 (GMT)
Corey...
Good luck with the amputation and your T-shirt business.
By all means link wwww.stumps.org to your web site.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, May 20, 2009 at 17:26:34 (GMT)
Hello this is Corey again...
I just wanted to give you an update. A really big Physical Therapy
clinic is donating their time to help me get in shape. At first they
were focused on trying to make my ankle and foot work. They quickly
found out that this was just not going to happen.
My next appointment my PT had the owner of the clinic come and talk to
me. He let me know that in his best opinion amputation would be the
only way I would ever be able to walk.
They are now helping me get my knee and hip in shape and ready for a
prosthesis. That way I will heal faster and walk sooner. They were
really my last hope of saving this leg. So, on Thursday I have a
Doctors appointment to talk about and maybe set a date for the
amputation.
I was having some trouble handling this until I started trying to think
of the fun side. I have been making t-shirts for my self and family of
all kinds of things for a long time.
Two weeks ago I heard a saying that made me laugh. It was " the lesser of two evils".
I thought about me with a stump and thought "my other leg must be more
evil". So, I designed a t-shirt based on that. Then I started having
all kinds of idea's! I told one of my friends and supporters who is an
amputee and he said I should make them available to everyone. That they
were good!
I looked on line and found a place to do that. Its at:
www.zazzle.com/coreycola*
10% of every shirt goes to the Barr Foundation to help in this time of
need! I don't know what i would do if it wasn't for the help of others.
The other 5% goes to me to save up so that when I go to the hospitals
visiting I can bring t-shirts to give out. Unfortunatly, I have to pay
full price on the shirts too. But at least they are out there. They are
for the person with a sense of humor. They are all rated G. Nothing
nasty. I had a request for a nasty one already. I refused to make it
even tho it cost me a sale.
Anywho, I just want to thank you for your help and sharing your story with me.
I would also like to ask if it is ok to put a link to your site on my store?
Thanks again,
Corey
www.zazzle.com/coreycola*
Helen Colagrossi <gunnertcm6@yahoo.com>
USA - Wednesday, May 20, 2009 at 17:22:14 (GMT)
Branch Hunsaker in Dallas, Texas...
Thank you & Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, May 01, 2009 at 02:36:33 (GMT)
Hello...
I just recently came across your web site. Though I am handicapped,
I am not an amputee. I am however finishing school at UT Southwestern
(in Dallas, Tx) prosthetics and orthotics program.
I was looking for a support-group type website for an assignment, and I came across your site.
I think it is a great forum. I will definitley be directing my future patients to seek advice from you all.
Good luck, and thanks a ton!
Branch Hunsaker <branchhunsaker@yahoo.com>
Dallas, Texas USA - Friday, May 01, 2009 at 02:34:13 (GMT)
Corey C. in Kathleen, Geargia...
I had the same decision to make in 1968 after my motorcycle accident.
My left leg was crushed and broken in many places. I also crushed two
vertibra and broke several ribs.
I was in the hospital for several months before I realized that the
doctors were experimenting to see if they could save my left leg after
the other injuries healed.
Presented with the same information you got I elected to have my left leg amputated below the knee.
I have never regretted the decision because it permitted me to walk again naturally ending any future surgeries.
If I had known about the ERTL Surgical Procedure in 1968 I would
have elected to have that done because it almost guarantees no post
operative pain. The procedure builds a bridge preventing the wishbone
effect in the residual stump as opposed to other amputation procedures.
You should be able to walk almost immediately after the ERTL Procedure with crutches.
An amputation is as safe or hazardous as any surgery. No more...no less.
After amputation surgery I was in the hospital for one week.
Have the amputation and get on with your life.
After amputation surgery I earned an FAA Aircraft Instrument Flight
Instructor certificate (I currently teach at Buchanan Field in Concord,
CA), I dance...poorly, walk fast and do everything I used to do before
the amputation.
Do it and good luck with your ERTL Procedure!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, April 27, 2009 at 00:28:18 (GMT)
Subject: To Keep or Not To Keep That Is The Question!
Hello...
I was in a motorcycle accident on September 6 2008. The bike is
fine. I took all the impact on my right leg.
I broke my Tibia and am now missing a 1 1/2" section but have a bone
graft that is not taking very well. I also broke my fibula in two
places.
They cannot repair it.
I have two rods in my lower leg and lots of screws. I lost most of the
muscle on the inside and front side of my leg. They took my lat. muscle
from my back to do a muscle flap. It measures, 11" x 6".
The skin graft came from my left thigh. My hip broke in five places and they "fixed" it with 23 screws.
My hip feels better the more I use it.
My knee has some discomfort but they say that will get better in
time. They went through my knee to put the rods in and to get the bone
graft from my femur. My ankle is fused in a drop foot position from
being in a splint for so long. My toes are also fused and can only move
about 1/4".
I have lots of nerve damage that pains me very much every day. Mostly
at night as I try to stay busy during the day. I have been working hard
to get this ankle to move with no luck. The more I work on my toes the
worse the pain is.
The OS says I will have more surgeries to keep this leg. Or I can have one surgery and be done with this.
What a thing to have on your head.
I have read all about the Ertl procedure and talked with some amputees.
I have been trying to find people who have had damage this bad and kept
their leg and are able to walk fine. Every time I ask I get introduced
to an amputee.
I guess my questions are:
How long after the Ertl would I be able to walk?
How dangerous is an amputation? As far a death goes?
How long in the hospital?
I don't know, maybe just any advice or help you can share with me.
This is the hardest decision I have ever been faced with. I just don't know what to do at all.
Thank you very much for your help and for this site!
I have a Wife and four wonderful kids!
Corey C. <gunnertcm6@yahoo.com>
Kathleen, Georgia USA - Sunday, April 26, 2009 at 23:55:07 (GMT)
Margaret Rajnic...
The opening line in your dating resume should be, "I am an Above
the knee (or below the knee or upper extremity amputee...which ever you
are" followed by, "I love camping, sky diving..." or whatever your
interests are.
I found as an amputee, being open & unashamed of the fact that
I am an amputee breaks the ice and separates the wheat from the chaff.
Those men who would be put off because of your "disability" are not
worth your time anyway. It is good to know who they are early on.
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, April 24, 2009 at 15:07:20 (GMT)
Hello...
I need some assistance in discussing the subject of my being an amputee with men.
I am a single female (no its not my profile for a dating site) and
need some advice from men and women on how they tell somebody that, "I
am an amputee".
I am on a dating web site and have several persons to meet and I need advice.
Thanks
Margaret Rajnic <zlataraj@gmail>
USA - Friday, April 24, 2009 at 14:57:23 (GMT)
Dear Sammy,
We do have something in common.
After my motorcycle accident I had the same choice as your husband
and never regretted it. I voluntarily had my left leg amputated below
the knee soon after to prevent the doctors from experimenting.
I wanted to get on with my life.
I found that it was normal for the stump to rapidly shrink for the
first year. To compensate for the normal shrinkage your husband should
be using more & more Stump socks to compensate for the increased
space.
It does stop after about one year unless there is significant weight loss or gain AFTER the year.
Bacterial infections occur if the stump socks are not changed
daily. Because of the heat & moisture in the prosthetic socket,
bacterial bugs thrive...they love it.
Also...
If the prosthetic socket is not a perfect fit abrasions will occur
encouraging bacterial infections.Your husband's Certified Prosthetist
should be making constant adjustments to insure that the socket is not
rubbing a specific spot raw.
There is light at the end of the tunnel. I had my B/K amputation in
1968. Today I remain an active FAA Certified Instrument Aircraft
Instructor. I teach, walk, dance normally because I have a perfectly
fitted Prosthetic Device. The foot I use is the RENEGADE from Freedom
Innovation. I use this foot because it permits me to walk normally on
all kinds of surfaces including sand, cobblestones and inclined planes.
The very best of luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, April 18, 2009 at 15:31:06 (GMT)
Hi
It seems that we have something in commom.
My husband had a motorcycle accident March 08. After
3 months in the hospital, rehab and home visiting nurse he developed an
infection and had to have a below the knee amputation.
The doctors wanted to experiment some more but my husband had enough
and discharged himself from that hospital and found a doctor that was
recommended to us to do the amputation.
He was relieved to have it done and be rid of the pain he had been
going through for 31/2 months. He had 8 surgeries in 2 months.
It has been very hard on our family. We have three children. He has not been able to
work for a year now and I don't know if he will be able to return.
He has been fitted for a prosthesis. It has not been
successful yet. He is continually shrinking rapidily and had to be refitted.
At present he has a bacterial infection and we are getting medical
attention so that he can heal and try again. He has been in good
spirits about his amputation and
has never felt sorry for himself.
I think that I have been the one that has been missing the limb more than he has.
It has been an emotional rollercoaster for me and the children, we have
three, and of course for him. He has been strong through the whole
thing.
I am writing because I think that he needs some kind of support group to answer some of these
questions.
Is he ever going to adjust to the prosthesis?
Will he always have infections?
How long will it take for him to adjust to the new prosthesis?
I am his wife and I will have been there for him 110% and always will,
but I think I need some support too! I have been feeling a little
depressed about the whole thing because everytime it feels like we are
going forward we take one step back and I know it gets to him to.
He does not mind me writing to you. My husband and I
are in this together and we both need support.
Please e-mail us.
Sincerely
sammy ballz <ballz961@hotmail.com>
USA - Saturday, April 18, 2009 at 14:53:50 (GMT)
I have a friend who lost his right hand in a farming accident some years ago. His stump is to where his wrist was.
He has never complained and has adjusted incredibly to using his stump
just like a working hand on the farm. He does not wear a prosthesis.
A couple of months ago both his parents were killed on the farm in a
tragic accident and he is now running it on his own (currently with
loving help and support from our small rural farming community).
My husband has been helping him on the farm and has identified that
he is in the mid stages of carpel tunnel syndrome in his left hand/arm
- which is of great concern.
He is also experiencing pain and discomfort on the end of his stump
and the underside of his forearm from having to do so much more with
his stump than he used to.
My husband was wearing protective gloves and said it was hard work on his hands.
What we need help with is finding a protective leather gauntlet or
something of the like that can fit over his stump and up his forearm,
cover the stump and not fall off.
Does anyone know of such an item available or anywhere to search or contact about getting one made.
Thank you so much for reading this and if anyone can help us help him - it would be appreciated beyond what words can express.
Sarah Stanaway Kemp <sarah@arty.net.nz>
New Zealand - Thursday, April 02, 2009 at 01:11:23 (GMT)
Hi Dan,
C.P. Wayne Kuniuk of San Francisco Prosthetics asked me to send you
an e-mail regarding some needed components for a mission the Barr
Foundation is involved in.
Bob Frank is a prosthetist from NY and has made 3 trips to Ibarra,
Ecuador where he works with a prosthetist and technician in a clinic
that was started by Club Rotario de Ibarra.
Since the clinic has opened, they have fitted 70 patients.
Their goals is to provide prostheses for 100 amputees this year.
They have already evaluated 50 amputees on Bob's last trip in January.
He will be returning in May and is need of the following components.
30 male and female socket adapters, 4 hole and 3 or 4 prong, with
rotation and without 50 foot bolts and pyramids for "Trulife" feet.
Wayne thought you might be able to send out a request to your
mailing list (or web site) to see if anyone has any old prosthesis
lying around.
Thank you in advance for your help.
Eva J Hughes, Executive Director
The Barr Foundation
BR>
136 NE Olive Way
Boca Raton, FL 33432
HYPERLINK mailto: t-barr@t-barr.com
HYPERLINK http://www.oandp.com/barr
www.oandp.com/barr
561-391-7601 (Phone and Fax)
Eva J Hughes, Executive Director, The Barr Foundation <t-barr@t-barr.com>
Boca Raton, Florida USA - Wednesday, April 01, 2009 at 19:15:43 (GMT)
hi,
my name is jeanette anderson. i survived an accident on december 30,
2008 that killed the most beautiful man on the planet, fritz hayden, of
austin, texas.
fritz and i were riding together on his bike that afternoon to see
a friend when a man driving a ford f-150 passed out at the wheel,
crossed the median and hit us head-on. we were each traveling in excess
of 70 mph when we crashed and fritz was thrown into the oncoming
traffic lane. i spun across the road into the ditch. witnesses who saw
the crash said they thought "i was a tire being blown off the truck."
i never lost consciousness at the site of the crash, but i never
spoke with fritz again, either; as we were on opposite sides of the
freeway, according to the accident report. fritz died that day of
massive head trauma.
i endured seven surgeries in the six weeks i spent at brackenridge
hospital in austin. i lost my right leg and am awaiting fitting for a
prosthesis. the nurses at the trauma floor told me that "i should have
died" given my massive injuries and internal bleeding. i received
forty-seven pints of blood throughout my procedures to stop the
internal bleeding. i am grateful for the gift of my life, but i am
still in mourning.
my heart is still broken from the loss of my friend. his friends
held a benefit within a week of the crash and raised a generous sum of
money as well as an outpouring of support for me and my father. their
love and support was transcendent and healing for both of us. fritz's
family, as well, reached out to us in love and kindness. for these
gifts, i am humbled and indebted.
i am seeking the contact of other crash survivors or of friends of
fritz's to sustain me as i recover from this horrible event. please
write.
sincerely,
jeanette
duluth, minnesota
Click here to Email
Garry Van Kirk
Bikers Accident Survivor Forum
bikeraccsurvivor@bacsuv.com
B.O.L.T.
Phoenix, Arizona
Supporting Our Right to Ride, Supporting Bikers In Their Time Of Need.
You can only protect your liberties in this world by protecting the other man freedom.
~Clarence Darrow~
Garry Van Kirk <truemensa@msn.com>
Duluth, Minnesota USA - Sunday, March 29, 2009 at 21:56:12 (GMT)
am a forty-four year old woman with an aka of my right leg.
I was riding a motorcycle with a friend in Austin, Texas in
december 2008 when we were hit head on by a Ford F-150 traveling in the
opposite direction.
My friend, Fritz Hayden, was killed that day; and I spent two months in
the hospital recovering from my injuries and the resulting seven
surgeries.
I feel very isolated in my experience and I am wondering how to
talk to or meet other amputees. I am in the process of fitting for my
prosthetic and am still experiencing a lot of pain and discomfort.
I am a divorced parent of two sons, and I have had to live with my
father while I recuperate. Any wisdom to be shared? Any contact
information?
My email address is jeanetteanderson@charter.net.
Thanks!
"utterly human, divine and awake."
--Dorriane Laux
Jeannette Anderson <jeanetteanderson@charter.net>
Duluth, MN USA - Sunday, March 29, 2009 at 21:30:26 (GMT)
I
live in Maine and love to swim in the ocean. I wear a prosthesis to do
this and try to use old legs so that I am not destroying my working
legs. Currently, I am need a left foot around size 12 womens (10 mens).
Do you have an old left foot that you would be willing to part with? I am not picky about type, etc. or even about the size.
Thank you
Sue <smurray039@aol.com>
Maine USA - Saturday, March 28, 2009 at 02:17:04 (GMT)
Jaye Alynn BS, CPT, NTP, MNT-c...
1) I highly recommend the ERTL Procedure for your B/K amputation...The ERTL details are located elsewhere on this web site
2) There are no limitations after surgery. However you won't be
able to run as fast as you did before surgery unless you have a
specific carbon fiber running leg fitted.
3) Support group forums are available on the Amputee Coalition of America web site (GOOGLE it)
4) I had a B/K amputation in 1964. Today I remain an active & current Instrument Aircraft Flight Instructor.
5) the only limitations I see are those imposed on yourself.
Good Luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, March 26, 2009 at 19:28:15 (GMT)
I saw a post from you on an amputee networking site and was wondering if you could provide some help.
I'm a 45 year old female. After a lifetime trying to salvage a
congenital club foot, the parts are worn out and I've scheduled a BKA
this November.
<
Can you share with me what you've run into as 'limiting'.... .quality support forums.....
Anything you have to share is greatly appreciated.
Wellness Partner
Holistic Nutrition Therapist and Certified Personal Trainer
Apex Recreation Center
<>
Jaye Alynn BS, CPT, NTP, MNT-c <greyvulf@comcast.net>
USA - Thursday, March 26, 2009 at 19:15:20 (GMT)
This is Steve Bogna again.
I told you about my passion to alleviate pain.
I have been progressing with my Night-Kap.
Hanger Prosthetics invited me to their Education Fair in Reno, NV, to
talk about it in front their workshop. I think it was a big hit. They
all pelted me with questions afterwards, (No, I wasn't pelted with
eggs....) They are now testing a unit out on a patient to confirm that
it truly can be a benefit for people.
My website has been put together to a decent degree. I really hope to
get production underway soon. There are a few issues left, like getting
the optimum sizes down for each type of amputee.
But, for the most part, it has been received well, and I have worked out most of the kinks.
www.night-kap.com (Patent Pending)
Through loads of research I was able to confirm that HEAT really
does play a role in fighting pain. (Through the reduction of nociceptor
activity).
It also allows for better blood flow by dilating blood
vessels,which is important to the healing process, as well as long term
health...
All in all, I think I'm getting somewhere, and perhaps people will soon know how good the Night-Kap is.
I've met several amputees that I wouldn't have otherwise; I like
working with the different challlenges and hope it continues to be a
positive journey.
I hope you're doing well. If all goes right, I'll be in Atlanta in June for the ACA convention to exhibit my invention there.
Sidewinder Solutions
Makers of the Night-Kap
Steve Bogna <stevebogna@gmail.com>
USA - Monday, February 23, 2009 at 21:31:28 (GMT)
Hello...
I am a high power lineman. I lost my right leg after 16 surgeries
on the right and 3 on the left due to a fall smashing both legs.
I walked for 3 years on a flex foot with no expectations, but got
around very well considering. I was able to climb 200'+ high voltage
towers...so back to work I went YEA!
I heard of a new foot so I did some checking. I found out insurance
probably wouldn't pay for it so I shelled out the money and got it
shipped to Spokane with a lot of anticipation.
It was weird to get used to. Going up steps was great but at the top of
the stairs it would hyper extend my knee (very painful and unsafe).
I was getting used to it finally BUT it wouldn't take an electrial charge so I had to send it back. That took 2 months.
It does strange things. Sometimes when on creates its own chattered
movement. The foot will migrate down so the toe is pointing way forward
causing more hyper extension ( oh boy goody) and now we are back to
having charger issues.
I have a family that went without so I could try this foot trying to make my life better.
OUCH that hurts after getting it and finding out it's JUNK.
I feel obligated to let my fellow amps stay clear or at least buyer BEWARE. These are close to $30,000 each!
Ask me what I'd like to do with it. I can't get anything for it on eBay.
I should have known when they told me "once I put it on it's mine," NO RETURNS.
Well I get so damn frustrated with it I'd love to go back to my flex
foot and THROW THIS JUNK THROUGH THEIR FRONT WINDOW or shove it where
it might not be such a comfortable fit.
I haven't even had it a year!
So fellow amputees spread the word that you heard of a high power
lineman in Washington state that had a Proprio foot less than a year
and _____HATED_____ it.
Too bad too. I fell in love with the concept.
FOR SALE VERY SLIGHTLY USED PROPRIO FOOT
EXTREMELY CHEAP
Give me a call or drop a note.
(509) 429-7353, madmuttly@yahoo.com, sruss@pn.usbr.gov, 1015 S. Clark ave. Republic, WA. 99166
steve russ <madmuttly@yahoo.com sruss@pn.usbr.gov>
Republic, WA USA - Sunday, February 22, 2009 at 00:57:57 (GMT)
Hi fellow amputees,
I have a below knee amputation as a result of a car accident in 1985. I was the guy on the motorbike.
I have seen a post on this site stating that they are not aware of any exercise equipment for amputees.
I am writing to let you know there is specific designed equipment available.
After suffering intense pain for over 6 years as my stump grew spurs
and grew outward through the bottom of my stump, I had a second
amputation and faced a long hard recovery with physios that had never
met amputees before in remote parts of New Zealand.
Frustrated I employed a professor of sports and exercise science at
Massey University to conduct a literature review to show the needs of
amputees and the guidelines to the equipment that would be required to
assist their requirements.
I have developed and clinicaly tested with MidCentral Health and NZALB
a machine called the "Limbar(TM)" under the company name
Hydraujoint(Ltd).2002
If any amputee would like to find out more about any of my machines or
when they will be available in their country please email me.
I am currently in Australia and New Zealand with interested
parties looking at manufacture rights in several more countries.
Including Thailand, Cambodia and Bali.
If you are a manufacturer of either prosthetic limbs or exercise
equipment and interested in the manufacture and distribution rights in
your country or state please also contact me via email.
Aiming to make rehabilitation and exercise machines available to all amputees that require them.
Stephen Kemp <stephenk@mobileemail.vodafone.com.au>
Australia - Saturday, February 07, 2009 at 13:41:15 (GMT)
Research On The Quality Of Life
I am a doctoral researcher in psychology at City University, London UK.
I am running a study exploring the quality of life of people with
acquired or congenital limb loss and am looking for people from any
country to complete a 20 minute questionnaire via the internet
exploring the quality of life of people with limb loss.
In summary, the study looks at how people view their own quality of
life in relation to other people, and whether they feel their quality
of life has changed over time. The findings of this study will
contribute not only to our understanding of how we view ourselves
compared to others, but also to gain a deeper understanding of how
people adapt to circumstances in their lives.
As part of the questionnaire you will be asked to provide some
demographical information (e.g. age, gender), the circumstances of your
limb loss, indicate whether you are living with any medical conditions,
and will be asked to rate your own quality of life and make judgments
about the quality of life of other people. Your participation and
responses to this questionnaire will be completely anonymous and
confidential.
For completing the questionnaire you will be given the opportunity to
enter a prize draw with a chance to win a £20 (or equivalent) Amazon
online voucher.
For more information on this questionnaire and to participate, please
click on the link below, or cut and paste the link directly into your
browser. You must be 18 years or over to participate.
http://www.staff.city.ac.uk/psychstudies/EW5a/
If you have any questions about the study or have any problems accessing the site, then please email me at
<
e.l.walsh@city.ac.uk.
Thank you
T: +44 (0)20 7040 4578
City University, School of Social Sciences, Northampton Square, London, EC1V 0HB, UK
<>
Emma Walsh, Doctoral Researcher, Dept. of Psychology <e.l.walsh@city.ac.uk>
London, England - Monday, January 12, 2009 at 21:29:28 (GMT)
Hello,
I Am having difficulty locating other people with a Lisfranc (or Chopart) amputation.
None around here that I've been able to locate.
Do you know anyone ?
My surgery was 11/17-08.
325.829.1961
CHARLES BRIGGS <cwaynebriggs@sbcglobal.net>
USA - Sunday, January 11, 2009 at 13:33:49 (GMT)
Certified
Prosthetist Wayne Koniuk of San Francisco Prosthetics says, "I have
done this by having the person sit on a six inch thick square of soft
pottery clay covered with some thin plastic.
The person gets in the chair and motors around for some time. High
pressure ares will be displaced by body weight and movement. You have
to add or subtract clay until uniform pressure is achieved.
I then use magic to turn this molded clay into a cool high tech seat cushion made from a foaming silicon.
It works every time!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, January 06, 2009 at 04:40:19 (GMT)
I am an occupational therapist writing on behalf of a client.
He has a high above knee amputation of his right leg, and he had a
complete hip disarticulation on the left in early '08. While in the
rehab centre, he was prescribed a high profile ROHO cushion for his
power wheelchair. This initially seemed fine, but he was also on a lot
of pain meds at the time.
In recent months, my client has been constantly uncomfortable while
sitting up in his chair. He is in excrutiating pain a lot of the time,
particularly on the left where he is actually weightbearing directly on
the pelvic bones only.
He is feeling very hopeless that he will ever be comfortable again.
We have tried the Quattro ROHO as well, and had a consultation with a
seating specialist who completed some pressure mapping, but nothing we
have tried with this client has improved his comfort level.
I am asking for your help to connect with people who have similar
amputations to find out what they are sitting on - they are truly the
experts after all.
Any links you could provide us or specific contacts would be extremely helpful.
Thank you in advance for whatever assistance you are able to provide.
Sincerely,
Genny Neufeld, OT Reg., (Ont.)
Occupational Therapist
Saint Elizabeth Health Care
Genny Neufeld, OT Reg <theneufelds@rogers.com>
Ontario, Canada - Monday, January 05, 2009 at 23:31:13 (GMT)
Thanks for your post.
My partner recently became an above knee amputee. He just got his "C" Leg but it is very slow going.
We would appreciate any encouragement, advice or referrals. We need to hear from others who have gotten moving with a "C" Leg.
Thanks and bless you!
Linda <L1ndaGT@aol.com>
USA - Friday, December 05, 2008 at 00:58:31 (GMT)
My name is Tyler Hyatt. I live in Sandy, UT. I'm 26 years old. I have a prosthetic leg amputated above the knee.
When I was 4 years old I was run over by a garbage trunk.
I'm married to my beautiful wife Lindsay of 3 years and we just had our first child June 30th, 2008. His name is Bentley.
I own a Tanning Salon. We bought the business in November of 2007. It has been quite an adventure.
I'm putting myself out there to help promote the
Amp1 Basektball Tour.
If you have a prosthetic limb please contact me or Scott Odom by visiting our web site:
www.amp1basketball.net
I have some videos on YouTube. Check us out.
www.youtube.com/amp1basketball
Thank you!
Tyler Hyatt <amp1basketball@gmail.com>
Sandy, Utah USA - Tuesday, December 02, 2008 at 13:33:06 (GMT)
My Husband is a BK Amputee. He has been a BK amputee for 20 years.
He uses an Alpha Original Gel Style Sleeve for his Prosthesis.
We are trying to find the same thing online, with no luck yet. We are
hoping to find it for less, since we have no insurance and they seem to
cost about $800.00 each.
Can you help us find this for less?
Thanks!
Limpy's Wife
CASSANDRA HAWES <riversedgelabs@msn.com>
USA - Friday, November 21, 2008 at 16:05:51 (GMT)
I am very new as an "Amputee", and hope you can help me in some way.
I was born with a very rare, severe type of Rheumatoid Arthritis, and have had many,many operations for this complaint.
Recently, I had my foot amputated from an infection from Arthritis.
It was either me or my foot, so thought best if I choose 'my foot'.
What I would like to know, is---do you hear of other folk becoming amputees from arthritis, and how they managed?
I do not have a prosthesis, as it is just early days, and my attitude towards this is very healthy, and can laugh at my self.
I also have a wonderful husband who is always there for me.
Hoping you can assist me, in some way.
Yours in Australia
Pat kohout oam <salisbury83@bigpond.com>
Australia - Thursday, November 13, 2008 at 17:49:15 (GMT)
Thank you Dan for the post and information.
I have decided that the amputation is the best thing that I can do.
My doctor agrees but we are having a hard time with workers comp.
approving the surgery. I am a diabetic and fell and injuried my
lesfrancs two years ago. I have developed unbearable pain in the area
and one doctor only wants to feed me pain medication. Most recently he
advised me that he works with hospice patients and he can get control
of the pain.
I informed him that im not dying and would like to get some quality
back in my life, not more pain medication. But because my surgeon can
not identify the exact reason for the pain they are denying the
surgery.
He is of course appealing their decision as its being reviewed by a
doctor who doesnt know me or care to know me. That is why I have been
searching for ppl with simular situations. so that I can share these
with my attorney. I can not find any information on the internet that
would help in my case, most are against amputation.
Its been hard as the CRPS is only a possibilitly and not a sure thing.
The sure thing is that I am tired of the way my life is headed and has
been for the past two years.
Once again your website is an excellent way for amputees to get together and help each other, keep up the good work.
Thanks again for your help.
Dan Halsell <sgtyogi@sbcglobal.net>
Ione, CA USA - Tuesday, November 11, 2008 at 15:00:39 (GMT)
Dan,
Please read my story of voluntary amputation on this web site.
The amputation was more than 40 years ago. I have never regretted the
decision to amputate my left leg below the knee. Today I remain an
active Instrument Flight Instructor, walk normally without pain, run,
dance and do EVERYTHING I used to do BEFORE the amputation.
Do it!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, November 11, 2008 at 14:57:17 (GMT)
--------------------------------------------------------------------------------My name is Dan Halsell. I am facing amputation after two years of pain and suffering after a lisfrancs injury.
I have had stents in my left leg, and an emergency bypass after the
stent was plugged after the surgery to repair the lisfranc injury.
I have been told that everything that could be done has been done, and
have been told by 2 doctors that BKA is the next and only thing that
can be done, or live the rest of my life on pain medications and in a
chair.
I have lost all quality of life. To get to the point I am looking for
amputees who have had similar problems, who eventually decided to have
the amputation.
I would like if at all possible if they could email me with the end
results. The insurance company turned down our first request for the
amputation and if at all possible I am looking for communication with
those who have positive results.
Sincerely
Dan Halsell <sgtyogi@sbcglobal.net>
USA - Sunday, November 09, 2008 at 15:33:39 (GMT)
Hi everyone.
I don't know if you remember me but I posted a comment asking for
advice and support for my brother in law Shane Cahill who lost both his
hands.
I just wanted to say a huge thank you to everyone who contacted me
and was on hand to give myself and my family advice and support. You
are such an amazing bunch of people! I can't tell you how much your
stories have helped me to stay strong for my brother in law.
An update on Shane.... He is out of intensive care and will be
leaving the hospital in 6 days after 65 days in UCSD and he is ready to
get the Hell out of there!
He is walking well despite the burn he recieved on his hip and his
stumps have healed well he is already trying to use them. Nothing will
keep our Shane back. Hopefully he will get some body powered hooks in
the next week or so and will begin training his muscles for the I-Limb!
Maybe one day we will be able to help someone who is going through what our family has gone through.
One thing I will say is when this all happened we cried we screamed
we went mad. Why us? Why Shane? what has our family done to deserve
this? We have already been through so much already. We would get mad
when people would say "Things happen for a reason" and "Something good
will come out of this".
You know what...that something already has!
We are so lucky to have Shane here with us alive. It has brought us
so much closer as a family. We have so much love and support for each
other that nothing will stand in our way! So many people have been
around to support us and we are so very thankful for that.
Once again thank you. A blog was set up for Shane
www.shanedogblog.blogspot.com
Check it out!
Much Love and Thanks
Emma Cahill & The Cahill Family <emmacahill82@yahoo.com>
USA - Saturday, November 08, 2008 at 03:50:56 (GMT)
Do you have any advice about the effectiveness of Ohio Willow Wood electric vacuum pump system?
I like to hike and ride my bicycle agressively enough where I sweat
during most of a four hour activity. I am also concerned about being
out in the woods and having the battery lose all of its charge while it
is trying to maintain a vacuum on a sweaty stump.
The Harmony system I currently use has a mechanical vacuum pump that is
designed to suck the sweat out through the pump and sometimes it works
when the vacuum pump isn't broken.
!
Thank you,
Ron Riter <ronriter@hotmail.com>
USA - Saturday, November 08, 2008 at 00:07:18 (GMT)
I have a son, Joel Armin-Hoiland age 22, who is facing an "elective" amputation of his lower leg.
Can you help with this, or give us some names?
Thanks
Andrea Armin <AArmin-Hoiland@co.humboldt.ca.us>
USA - Thursday, November 06, 2008 at 18:24:49 (GMT)
Do you know of any place that will accept and distribute donations of clothing tailored for arm amputees?
My husband is an attorney in San Antonio, Texas and a left-arm
amputee. He has a lot of business suits and dress shirts with the left
suit arm tailored for his stump that he no longer can wear. I would
prefer to give them to someone that can use them.
Sincerely,
Alisa Strandmo <chemteach1@juno.com>
San Antonio, TX USA - Sunday, October 19, 2008 at 14:12:26 (GMT)
Subject: Experiences with Otto Bock e-pulse pump
Hi all,
A friend of mine was put on an Otto Bock Harmony e-pluse pump to
help improve her walking (lean, slight build, 6" BK) and it certainly
helped.
Unfortunately these pumps seem to be failing at an unacceptable rate.
Her first pump worked for a little over 3 weeks and then wouldn't
run reliably. It would just quit operating for no reason, but would
work for a bit if powered down and restarted.
That one was replaced under warranty (and an admission that there
was a design flaw) and the new one has lasted all of a month before it
no longer held a charge. It lasts all of 3 hours instead of the usual
two days. And no, there is no leak, it cycles as infrequently as it did
before (2 secs every 5 minutes).
Are others having similar issues with this pump?
I have seen posts elsewhere that suggest it's a piece of junk.
It certainly has some design flaws, like being flat, when
all prothetics are cylindrical, but is there is any point it keeping it
if it's just going to keep failing until the warranty runs out?
Is there something else she should consider using?
Thanks in advance for your inputs.
Doctor Bob <imcra2@yahoo.com>
USA - Friday, October 17, 2008 at 18:41:49 (GMT)
Dear Mohammed Shamil Abdo in Addis Ababa, Ethiopia...
Your request was posted to the www.stumps.org GUESTBOOK at 1453 UCT Tuesday October 14th, 2008.
The very best of luck in securing the monies needed or the donation of a pair of used prosthetic devices.
Used prosthetic devices cannot be resold in the United States of
America but they can be either sold or donated to citizens outside our
borders. Perhaps someone reading this posting will have had a relative
or amputee friend that has passed away and will send you the legs you
need.
Good luck in your quest!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, October 14, 2008 at 15:04:37 (GMT)
Dear Sirs/Madam,
Name Mohammed Shamil Abdo
Age:46
Marital Status Married
Children four
Nationality:Ethiopia
Addis Ababa
Email Addres:mshamil2000@yahoo.com
I am living in Addis Ababa capital city of Ethiopia. With
unexpected accident I have lost both my legs before twenty years and
now I am in big trouble to face the challenge of life.
Once upon a time after I have lost my legs one charity organization
which is found in Ethiopia provided me a man made two legs by sending
me to Germany. However, because of long time service my artificial leg
put out of service as a result I'm in bed.
So that, my children and I am in big crisis and I'm afraid my children's will go out to street.
Unfortunately artificial leg is not found in Ethiopia. Hence I
identified that man made leg is produced in South Africa Nation with a
cost of 7,000.00 - 9,000.00 dollar per leg.
When my best friend go through web site he found out your company
address and fortunaltely with the help of almighty God we are in
identical situation.
So that I'm begging you you to help me to the best of you.
Since you feel the very depth of the symptom I expect to give me your hand.
If you are willing to provide me the charity I will send you through my
full address and picture of mine. I'm looking forward to see you soon
and say thanks in advance for your cooperation.
Thank you!
Mohamed Shamil Abdo <mshamil2000@yahoo.com>
Addis Ababa, Ethiopia - Tuesday, October 14, 2008 at 14:50:58 (GMT)
I thought you might be interested in the solution we found for the student's archery.
Here's my original query:
Hi,
I am a teacher of an eighth grade boy who was born without a left hand.
His arm ends about halfway down the forearm. He has developed many
compensation techniques and can do most activities, including baseball,
golf, biking, and playing the baritone horn.
This year the gym class plans a unit on archery at a local sportsman's
shop that will be providing equipment for the kids to use as they learn
archery. The student had a prosthesis in primary school, and he hated
it, and he found it easier to work without it, so he broke it.
Do you or your members have any suggestions of adaptations to enable him to do archery with no left hand?
Thank you!
Leslie or David
USA - Wednesday, August 20, 2008 at 04:14:25 (GMT)
The local sportsman's shop worked with him and found that they could
attach a simple wristband to the bow. The purpose of the band was to
keep the bow from falling to the ground after the shot. By holding the
string, the student was able to use his stump to raise the bow and he
was able to sight. When he let go of the string, the arrow flew, and
the bow flopped down, hanging from the wrist strap, but did not drop to
the ground.
Thank you for the ideas you gave us to look at.
Leslie or David <muddleaged@frontiernet.net>
USA - Sunday, September 28, 2008 at 21:15:26 (GMT)
Colin in South Africa...
The "C" Leg is usually available on eBay for $5000
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, September 26, 2008 at 13:30:20 (GMT)
Hi there
I am Colin from sunny south africa.
I too am a TKA (through knee amputee).
Said bon voyage to my left leg in July 2005 during a repair to trackless mining equipment.
An operator ignored his supervisors instructions and crushed me against
the machine that I was working on which resulted in crushed
pelvis,intestines, bladder and an open fracture to my femur which after
10 days had to be amputated due to gangrene setting in.
I was shocked at what had Just happened, as its amazing how ones
body deals with trauma. No pain except for the initial crushing.
I was hospitalized and medically comatized for 3 months.
I was very negative at first, but then realised I have a beautiful
loving wife, daughter and above all we have JESUS. There was a reason
why this happened, but I believe that GOD does not have to do ANYTHING
( Some people argue that, God, why do you heal cancer patients, but not
us amputees?)
He (GOD) educated people and gave us TECHNOLOGY, such as the C-LEG,
bearing in mind that the amputation will be a reminder to Always walk
the straight and narrow and focus on what's really important, such as
the LORD, family and friends.
Here in South africa workers compensation is somewhat lacking as they only give you cheap prosthesis's.
A C-LEG is a definite NO-NO no matter how you try to motivate it.
I am currently purchasing one (a C-LEG) from my own, "pocket" as my
employer SANDVIK mining and construction are in the process of loaning
me the funds to purchase said leg.
I will have to refund them once the court case is settled.
I am forever grateful to them, they are a first class employer.
You see, it was the mines neglegence and not my employer, as the mine was the 3rd party.
Meantime I'm continuing with my life and making the best of it.
Keep well
Regards,
Colin Ginsburg <colinginsburg@gmail.com>
South Africa - Thursday, September 25, 2008 at 22:19:52 (GMT)
My invention is coming along.
It’s me again, the Sidewinder. (Steve Bogna). I just wanted to let
you know that I am now expecting the prototype of my invention. I plan
to make some presentations and get people familiar with the product,
and get their feedback on my heated stump cover for residual limbs. I
still don’t know if it will be a big hit or not.
I know the heat can alleviate a fair amount of discomfort, and I also
believe by keeping the limb warm, you will reduce the frequency of the
phantom pains----I am not claiming that it will affect the severity of
the spasms, but I think that it can be beneficial by reducing the
number of times that those spasms hurt you.
I know the humidity affects me, so does cold, and if I shiver, it
almost always triggers an onset of spasms for a little bit. But If I am
warm enough, I rarely get spasms.
My product is designed for the “Down time” when you are not wearing your prosthesis. Wear it to bed if necessary!
>BR>
I‘ll keep you posted, since my goal at Sidewinder Solutions is to
provide amputees with the tools they need to live pain free. I think
I’m onto something with this invention.
You know, I must say that it is nice to be able to converse with amputees and compare notes, etc.
I can’t believe that I just tried to go it alone all those years
with out any help from others. Of course, the world didn’t have the
internet in 1979, too. I knew my situation was extremely unique with my
vast amount of injuries, and to me, my amputation was just a small part
of my recovery process, so I was never hung-up on it. It probably
didn’t help my mental outlook when my dad died a year after my wreck.
My amputation never set me back; as I was looking forward to it after
all those failed surgeries. I just assumed that nobody could relate to
my predicament, so I never turned anywhere else for those answers. In
my mind, since my dad was gone, I knew I needed to find them on my own.
I have wandered down many dark avenues in search of said answers, some
just for peace of mind, some for physical benefits and pain relief.
Yet, the process of trial and error is costly and time-consuming. It’s
so much better to have someone tell you what will work so you can go
right to it.
Your website is incredible. Keep up the good work.
Steve Bogna <steve@cbdcabinets.com>
USA - Wednesday, September 17, 2008 at 21:35:55 (GMT)
Sage Loats in Oakland, CA...
Stumps 'R Us meets monthly in a different location every month. The
meeting place, time, location and cost is in the invitation always
posted on page ONE of this web site.
Our September meeting (Saturday September 13th, 2008) takes place at the GAYLORD India Restaurant in Sausilito at Noon.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, September 08, 2008 at 23:27:22 (GMT)
Mr. Sorkin,
I am a counselor working with a 26 year old woman who is facing an
above knee amputation due to cancer. Searching the internet looking for
resources for her I came across your website and looked to see if you
have regular meetings or a way for her to find a community.
Right now she feels very alone, scared, and angry. Please send any information and I will pass it on to her.
Thank you for your time.
Sincerely,
Sage Loats <sloats@haartoakland.org>
Oakland, CA USA - Monday, September 08, 2008 at 23:22:14 (GMT)
My name is Emma Cahill and my husband and I live in San Diego with my brother in law.
On Wednesday he was at work as a window cleaner and was electricuted by 12,500 volts.
Thank the lord he surived but after many surgeries they told us they
are unable to save his hands and he is due to have surgery on Monday to
remove them.
The internal and external damage was too much.
Shane (my brother in law) was the most active person I know. He
rock climbed, BMX, moto'd 50cc well think of everything extreme and he
did it!
It's such a shock to everyone. The worst part is he is in a medically induced coma and will wake up with no hands.
I have been researching prostetic hands and have come across the
I-Limb. I just wondered if anyone you know through your group has been
in his situation. I want to learn as much as I can to help him through
this extremly hard time.
He is only 34 and we know with everyone's support he will do everything he did before but just differently.
Any advice, support or information would really help our family
right now. We know we have a long recovery mentally and physically
ahead of us and we all would like to prepare and have information at
the ready for when Shane wakes up.
Thank you!
Emma Cahill <emmacahill82@yahoo.com>
USA - Monday, September 08, 2008 at 13:23:29 (GMT)
Dave Paschold in Lincoln, NE..
Yes I have. Molly is an Honorary Member of Stumps 'R Us. She attends very few meetings however.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, August 31, 2008 at 21:44:40 (GMT)
Have you seen this one?
It is Molly the horse amputee with working prosthesis.
Dave Paschold <dlpaschold@landolakes.com>
Lincoln, NE USA - Sunday, August 31, 2008 at 21:42:04 (GMT)
Ron Mendricks in San Francisco...
Welcome...
A Stumps 'R Us Survival package is being sent to you.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, August 31, 2008 at 21:36:53 (GMT)
New to Stumpdom.
Ronald Mendricks <rmendricks@yahoo.com>
San Francisco, CA USA - Sunday, August 31, 2008 at 01:32:04 (GMT)
Paul & Barbara In Healdsburg, CA
Wayne Koniuk, C.P. is Stumps 'R Us Official Prosthetist. Whatever advice he gave you I would wholeheartedly endorse.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, August 27, 2008 at 19:52:45 (GMT)
I’m Paul Micallef and a new left foot amputee in Healdsburg, CA.
After talking to Wayne Koniuk at S.F. Prosthetics, I got some
conflicting advice about a good prosthetics outfit in Santa Rosa.
Does Stumps R.Us have any recommendations about prosthetic makers in that area?
Thanks
Paul & Barbara <paul@vintage36.net>
Healdsburg, CA USA - Wednesday, August 27, 2008 at 19:48:14 (GMT)
Maryanne Taylor...
BR>
You need to go back to your CPO. It sounds like your leg is not
adjusted right. I am a bilaterial bka myself and I walk without any
aids whatsoever.
If you want to...E-mail direct and I will answer all of your questions. If I can't I will send you to someone that can.
Jack Pickerd aka PEGLEG JACK
JACKSONVILLE, Texas USA - Wednesday, August 27, 2008 at 17:48:56 (GMT)
I
have been an amputee for over a year. Lost the leg below the knee to
diabetes. I did not get PT for six months and now I am having problems
walking on my prosthesis.
I am 64 and in good health both physically and mentally. The problem is
that my leg seems crooked and buckles when I walk on the walker.
I ride an exercise bike for 15 minutes a day and often twice. At PT
they said I have learned all they can teach me but I still can't walk
for more than a few minutes on the walker..
Any suggestions??
maryanne taylor <maryannet8@hotmail.com>
USA - Wednesday, August 27, 2008 at 02:08:13 (GMT)
Diana McBride...
Did you ever think about using just a regular towel to sit the gentleman on?
Just fold a regular size towel in half lay on the board and scoot on to
the transfer board with the towel underneath his botton. This will make
sliding
over the transfer board much easier. He will be able to get into the
wheelchair and if it is electric with arm rests that raise it will make
it alot easier.
I had tried this method after my first amputation (LBKA) in August
200., Then when I had my second amputation (RBKA) in February 2004 I
just would raise the arm rest and scoot into the electric wheelchair
and no problem.
You would be amazed at how strong your arms will get lifting your own body weight.
You didn't mention why he has such a tender bottom maybe that is
something you need to check into. An air cushion or foam w/gel cushion
would be of help.
It has been awhile since I've been to this site so had to read all the latest messages that have been posted since January 2008.
I had written at that time that I had gotten an open wound on my
right leg. I had to finally go to see a wound care nurse and then a
doctor. Now I'm having to go back to the doctor as the new PA at my
clinic doesn't like the look of the right stump.
I tried the vacuum system, Anthony put me into, BUT it was causing
too much pressure on my knee cap. So he had to attach a strap to hold
on the new socket and leg. I sure miss my pin liner.
A couple of times I've went to get out of the truck with a small step
stool and I have lost the leg. Sorta funny
really as my daughter was helping me the day and I hollered "I just
lost my leg". So she ran back to me and got my leg and then ran back to
get the wheelchair. When all of us are out and about we have a ball.
Hey life goes on, just because you lose some limbs doesn't mean
you can't still have a life. I baby sit with my two grand children with
my husband help, of course. HA! HA!
Poor baby he gets to do the cooking.
Well that is my news for this visit.
Janet Lee Toomey <wjtoomey@sbcglobal.net>
Herrington, KS USA - Monday, August 25, 2008 at 02:43:25 (GMT)
Leslie or David,
The solution (TRS) for you may be at this web site recommended by Stumps 'R Us Certified Prosthetist Wayne Koniuk.
http://www.oandp.com/edge/issues/articles/NEWS_2008-07-02_02.asp?searchquery=Black+Iron
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, August 22, 2008 at 17:05:06 (GMT)
Hi,
I am a teacher of an eighth grade boy who was born without a left hand.
His arm ends about halfway down the forearm. He has developed many
compensation techniques and can do most activities, including baseball,
golf, biking, and playing the baritone horn.
This year the gym class plans a unit on archery at a local sportsman's
shop that will be providing equipment for the kids to use as they learn
archery. The student had a prosthesis in primary school, and he hated
it, and he found it easier to work without it, so he broke it.
Do you or your members have any suggestions of adaptations to enable him to do archery with no left hand?
Thank you!
Leslie or David <muddleaged@frontiernet.net>
USA - Wednesday, August 20, 2008 at 04:14:25 (GMT)
Diana McBride...
Being a bilateial bka myself, I have on occasion used a transfer board. I don't like them.
Have you tried having your amputee sit on a small pillow and then
slide across the board using the pillow to overcome the friction?
Make sure the board is really stable and will not tilt in either
direction or it will give the person the feeling that he is falling
off.
You may need a wider board, where the person can grip the board on both sides to stablize himself.
I can't remmember where I read it but there are Federal programs that
will buy and build a van where the drivers seat is taken out and
replaced with a locking wheelchair in the driver's position.
I hope this helps.
Jack pickerd, aka PEGLEG JACK <sparksjwp60@suddenlink.net>
Jacksonville, Texas USA - Monday, July 28, 2008 at 19:39:21 (GMT)
Diana McBride somewhere in the USA...
As far as I know you are doing all you can with the transfer board.
Perhaps someone reading the GUESTBOOK has a better idea.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, July 25, 2008 at 20:47:07 (GMT)
I am a physical therapist and am working with patients with amputations.
I have one patient currently who has bilateral transtibial amputations,
both within 2 months. He can not yet be fitted for prosthesis.
We are having some trouble with transfers.
Text books often recommend slide board transfer but he has a tender back end and the slide board is not comfortable.
Any suggestions on how to transfer while keeping him from sliding forward onto the floor?
Thanks so much
Dianne McBride <dm72003@hotmail.com>
USA - Friday, July 25, 2008 at 20:44:18 (GMT)
Peter Klauer...
1) The pain at the tip may decrease with time as your stump gets used to the pressure of Physical Therapy.
2) You may be allergic to the GEL Liner. Try a different liner.
3) Use Self Hypnosis before PT
Dan Sorkin <DanSorkin@comcast.net>
San Francisco, CA USA - Thursday, July 17, 2008 at 11:05:06 (GMT)
I read your advice to James Buckley with interest and have a question.
I am an AKA as of March of this year. I am in a C-Leg and working with a good PT and prosthetist. I
think.
I am in the early days still but after an hour long PT session learning
how to use my new leg, the end of my stump hurts too much for me to put
my full weight into the socket.
My prosthetist has worked hard and made multiple modifications and now
no part of the socket touches the part of my stump that hurts, so I
guess that it is just pressure from the gel liner.
There is no outward evidence of soreness and the MD finds nothing wrong with the stump.
I have been told that the stump will get used to the process and the
pain will become less and my walking time longer with time.
Does this sound right to you?
I should clarify by saying that at the begining of a PT session there is no pain.
Peter Klauer <peterklauer@gmail.com>
USA - Thursday, July 17, 2008 at 10:58:43 (GMT)
James Buckley in Saginaw County, Michigan...
Please have your Certified Prosthetist fit you with a NON-PIN insert. The Pin at the tip is causing discomfort you do not need
In addition you can also reduce the tip pressure by inserting a Dr.
Scholl's Lambs Wool piece at the bottom of the socket to cushion your
sensitive stump tip. Any Drug Store will carry this inexpensive
product.
You shouldn't have to, "Get Used To Any Pain Or Missfit".
It is the job of the Certified Prosthetist to fit your socket perfectly so there is no discomfort whatsoever.
Adjustments have to be made from time to time if the stump changes
shape because of weight gain or loss but even that should not interfere
with your comfort.
If your Certified Prosthetist balks at changing from the Pin device
to another more comfortable system you probably have a moron for a
Prosthetist.
If that is the case find another Certified Prosthetist and Physical Therapist!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, July 15, 2008 at 19:52:20 (GMT)
Subject: New B/KA
Accident date:4-22-08
Prosthetic start date: 7-10-08
I am set up with a pin and lock system.
From the first day using the prosthetic, I have been dealing with
pain on the bottom of my limb. After the second day of PT, I notice
bruising on the bottom. For the most part I can get up and move for a
short period of time with some discomfort. If I rest, then begin to
move again the pain intensifies.
PT and Prosthetist are trying to figure out the correct size needed.
My question is: Do I keep working through the pain? Is the bruising a sign to slow down?
James Buckley <obuacalla@hotmail.com>
Saginaw County, Michigan USA - Tuesday, July 15, 2008 at 19:39:17 (GMT)
Just a note to say Thank You, to Jennifer and Pam for the amazing gift they have given to me.
I had no idea 'till reading their recent posts to the GUESTBOOK that I
had left such an impression on either one of them. I was so overwhelmed
by their letters because just by living with and accepting my
disability, unbeknownst to me, I was able give them inspiration when
they needed it.
As people with life changing disabilities, what we all can learn from
this is that when you’re asking yourself “why” and “what is the purpose
of my life now” the answer is truly right in front of us.
Angela Briguglio <angela@goldstonelaw.com>
CA USA - Friday, July 11, 2008 at 19:56:41 (GMT)
I
had terrible lightning bolt like shooting phantom pain that did not
allow me to sleep. Each night was worse than the previous night. I was
at my wits end. Nothing seemed to work until I went to an Acupunturist
here in the Los Angeles Basin.
Specifically in the Newhall, Saugus, Valencia area of North Los
Angeles, (Now called Santa Clarita or The Santa Clarita Valley, CA)
I met a very intelligent and resourceful acupuncturist. I was lucky!
Her name is A. Young Kim, (661) 251-5390 Address: 18261 Soledad Canyon Road, Santa Clarita, CA 91387
She does accept most insurance plans. She asked me numerous
questions before doing any procedures. She has a Bachelor's degree from
Korea, and a Masters and Doctorate that she obtained here in the
states.
Results were nothing short of amazing.
The first 90 minute session of acupuncture really turned me around.
Beforehand, she asked me lots of interesting questions like, "Are
you a fast eater?" or "When you are cold, are your feet colder than the
rest of you?" The questions gave her a better understanding of my
problems and their causes.
Afterwards, she also gave me a sample of some powdered herbs to mix with water a couple times a day.
I have to admit that my spasms were reduced to nothing! It was like a
light switch being turned off. It's a major relief to be let go of that
burden, as I'm sure you know.
I hope she can continue to show me other ways to manage my pain episodes.
Just wanted to let you know that I'm feeling better. I look forward to every day now.
Steve Bogna <tbogna001@socal.rr.com>
Los Angeles, CA USA - Sunday, July 06, 2008 at 13:47:27 (GMT)
My name is Garland Creasey ( left above elbow amp).
I am not writing for myself but for a young lady I just met. She is
remarkable. I would appreciate any thing anyone can do for her.
She had quadruple amputations and smiles when she talks to you. Her web site is:
http://www.loveoflindsay.com/
A kind word or two from others will let her know she is not alone in her world...
Thank you!
Garland Creasey <GCREAS@aol.com>
Richmond, VA USA - Saturday, July 05, 2008 at 21:29:55 (GMT)
Hello June Valentine,
Such a tragic incident to have happened on Fathers day! May God give you all enough strength to deal with this.
I am 50 years old now and had an accident and an above-knee amputation
of my right leg three years ago while traveling in India. It has been a
tough ride but for some providential reason, we all seem to get the
strength to deal with what is served to us.
I am back into my job, doing all of the needed activities independently.
First few days will go in a daze and one doesn't realize the impact of
such misfortune. In my case, I started feeling the hit only after I got
a prosthesis and began a semi-active life.
Family support is extremely valuable. In the first few years, there are
lot of frustrations because the amputee expects, though not really
justified, the close family members to understand every small
adjustment the amputee has to make in life. This is where you have done
an invaluable thing by directly becoming part of a group.
That is a great beginning.
Your large family is a great asset too. The best advice is not to rush
it. As one of the members suggested, it helps a lot talking to other
amputees.
Hidy will do just fine. She will be absolutely normal though we all know it is a different 'normal'.
God bless you all!
Vijay Saradhi <vjsara@gmail.com>
New Jersey USA - Saturday, July 05, 2008 at 13:29:52 (GMT)
Hi June Valentine...
My name is Pam Seifert. I am an architect in California.
In October 2003 at 53 I suffered a stroke. Then two years later I had a
life-altering blood clot. That one caused me to lose my left leg below
the knee.
As you might have guessed I am a member of "Stumps 'R Us".
Your daughter has a big challenge ahead of her. I look at both my
health "calamities" as challenges. They've taught me so much. I have a
lot more empathy than I had before. I've learned to accept help and
even to ask for it when necessary, though that's still not easy.
Living with an amputation is challengeing, but manageable. I found
a great prosthetist through Stumps 'R Us. I have now relearned to walk
twice as an adult.(I love my physical therapists!) I am able to ride my
horses and do much of their care. I can drive and work too.(
I understand that a wheelchair is not a jail , but rather, a mobility tool.)
I attend lots of support groups which are enormously helpful.
Yesterday, for example, I went to an afternoon stroke support group at
the hospital in Berkeley where I did my acute rehab after my stroke.
Then in the evening I met some friends for dinner before we went to our
brain injury group in another local city.
I don't know that any of this is helpful, but I would be very happy to
talk with your daughter. I don't know what resources you'll find there
for her, but it is really helpful to talk with others facing similar
challenges.
After losing a limb we are still the same people. I'll share a quote I
love: "You don't ever get back to where you were, You get back to where
you are going". (I believe our paths are only apparent to us as we live
through them and learn as we go.)
Attitude is truly key- as Dan already told you. One woman in our group
- a lovely, dynamic, vibrant woman , lost both legs due to bacterial
menengitis (breathed in a bad germ!). She lost both legs and a bit of
her pelvis too and yet she is vibrant and happy and fun! She once told
me about a fellow who was physically in tact. but depressed.He looked
at her thinking how glad he was that he wasn't her. She looked at him
with his bad attitude thinking how glad she was that she wasn't him.
She has a demountable wheelchair and can drive anywhere. She gets into
the driver's seat, disassembles her chair and puts the pieces on the
passenger seat. She's travelled cross country that way.
More and more there are wonderful activities and opportunities for
those of us with disabilities. It is not easy to accept becoming
disabled, but it is easier if we try to live as full a life as possible
with our disabilities. It does force us to figure out for ourselves
what is truly important to us.
This past week I went on a really enjoyable trip in northern
California: There is a program called Access Adventure begun and headed
by the great grandson of John Muir. He is a life-long horseman who has
m.s. This program carries on his great grandfather's legacy by taking
wheelchair accessible horse-drawn carraiges on back country trips for
people with mobility challenges- Great fun!
I hope the best for Hidy and her husband and all of you. If I can help, please let me know.
Pam Seifert <PAMSEIFERT@aol.com>
June Valentine in Carney, OK
What a terrible accident to have on Father's Day!
I am sending you via Priority Mail a Stumps 'R Us Survival package to
give to your daughter Hidy. In addition by separate E-mail I will Cc
several female members of Stumps 'R Us to communicate with Hidy through
you until she has her own Internet address. They will share their
POSITIVE experience with your daughter
In order to find an Amputee Support group in Oklahoma I suggest you contact the Amputee Coalition of America at
www.amputee-coalition.org
<
They are a fantastic resource.
Being cheerful & positive is the best advice I can offer you.
<>
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, July 01, 2008 at 20:59:12 (GMT)
My name is June Valentine.
My daughter Hidy, her husband Mike and his parents were in a 2 car
accident on Father Day June 15th, 2008 when a pick up truck pulled out
in front of them. Mikes father was killed his mother is ok and Mike and
Hidy are still in the hospital.
Mike had 2 broken legs (thigh bone) and multiple other injuries. He still doesn't know much.
The reason I have contacted your group is that my daughter Hidy who is
41 lost her right leg above the knee. She is still in the hospital and
has just beginning therapy. She does not have the Internet but we are
trying to see if we can get it for her.
They are on Social Security so do not have any money.
Medicare is covering the expense for all of this for now.
I want to be supportive and do what I need to do, but this being my
first time expericence with this type of situation and do not want to
do anything to hinder her in any way.
I was wondering if you or any one from the group could give me advise
as to what I need to do or NOT do to help her accept what has happened
and recover.
Hidy has 5 childred and 2 grandchildren. She has 1 brother and 1 sister, and lots of neices and nephews.
Any advice you can give would be greatly appreciated.
My mailing address is: PO Box 125, Carney, OK 74832
Thank you!
June Valentine <gmajvalentine@att.net>
Carney, OK USA - Tuesday, July 01, 2008 at 20:47:42 (GMT)
Hi Dan,
I'm an RHD amputee, I lost my leg to necrotizing fasciitis (flesh
eating virus) almost 3 years ago now. I recovered really quickly,
adapted to getting around on crutches and went back to work 3 mos.
later, even interviewing and taking on a new job during that time.
A few weeks ago I travelled to las vegas by myself to meet friends and
on the way home I had a little problem with my crutches, with one
breaking on me in the bathroom - leaving me to the mercy of a stranger
to get to the gate, and on the flight crew to get me to my seat. (Um,
United...two little old 4'10" asian ladies CANNOT carry a full size
person in an aisle chair....you guys are begging for a law suit).
I hobbled/hopped on my one leg and single crutch rather than risk having them drop me.
As I was seated, I looked over and realized that the woman sitting
across the aisle from me was a double above knee amputee. She was
fantastic, very funny and personable. I didn't get a chance to get her
name, but I think she mentioned she was a member of stumps 'R Us and
was located out of Santa Rosa.
I found myself thinking about her repeatedly these past few weeks wishing I'd had a chance to chat more with her.
As I got on the plane I was feeling very self-conscious and at the
mercy of others, and shaken up - not because I had been injured, but
because it was the first time since my amputation that I was alone and
"helpless". Just seeing her sitting there made me laugh - I mean, what
are the odds?
Her humor immediately put me at ease and I felt better just seeing her there.
Thinking about her made me realize how valuable the humor and humanity
this organization brings to so many many people are. Thank you,
although I'm not much of a support group joiner, I have checked in here
from time to time for stories and resources and it's all very much
appreciated.
Best Regards,
Jennifer Gil <jennifer.gil@gmail.com>
Foster City, CA USA - Monday, June 30, 2008 at 12:32:29 (GMT)
PEGGY J.
You sound like one very remarkable young lady. Hang in there and
have fun while you are at it. To me it is 99% of the battle when you
can laugh and have fun being an amputee.
I am a bilaterial bka and I love to joke about them.
jack pickerd aka PEGLEG JACK <sparksjwp60@suddenlink.net>
JACKSONVILLE, Texas USA - Saturday, June 21, 2008 at 15:09:33 (GMT)
Valentín Secades in San Jose, Costa Rica...
Thank you!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, June 21, 2008 at 04:06:16 (GMT)
My name is Valentin.
I´m a developer from San José, Costa Rica, and was just reading stuff on your site.
I can say it is just amazing how little I looked for support groups
throughout my first year as a AK left leg amputee. I was reading
through some of the posts, and I just wanted to offer my help/services
in whatever way I can.
I hope you have a good day, and keep up the good work.
Best regards
--
Eng. Valentín Secades M.
Lead Developer/Trainer
Quality XP Development
Software and database development/consulting 200 N Metalco Cond. El Rosal #1 San José, Costa Rica
Office USA: (503) 616-4399
Office CR: +506 235-5304
Cell: +506 398-3425
IM: Google Talk vsecades@gmail.com
Skype vsecades
http://www.qxdev.com
Valentin Secades <vsecades@indigitalcr.com vsecades@gmail.com>
San Jose, Costa Rica - Saturday, June 21, 2008 at 04:03:57 (GMT)
Peggy J. in Defiance, Ohio...
I wish everyone I knew had your attitude.
Wit, a sense of humor and the courage to look at life's
disappointments as merely a bump in the long road to self sufficiency
and strength of character will present you with a rewarding and happy
life.
It has worked for me and I know it will work for you.
Thank you for sharing your positive story. You are a remarkably mature young woman Peggy J.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, June 20, 2008 at 16:50:54 (GMT)
I lost my leg when I was a thirteen month old child.
My mother had set a pot of boiling water on the counter unbeknownst
that I was just tall enough to reach for it. Which of course being the
curious child I was, I did indeed reached for the very pot of water
that ended my right leg's life as I know it.
My leg was removed just below my knee joint, thus giving me the ability to wave it at my friends.
One of those friends being Ellen, who told me about stumps-r-us in the first place. She said she was bored and googled it.
I thought it sounded cool so I googled it myself and here I am.
I'm 17 now and the only time I ever vent about how much I hate not
having a leg is when I am scribbling it all down in one of my many
journal/sketchbooks. So, yeah I think that's everything and I guess I
just wanted to be a part of this.
Thanks!
Julie Reith (AKA Peggy J.) <stub44@gmail.com>
Defiance, Ohio USA - Friday, June 20, 2008 at 16:41:53 (GMT)
Catherine in Switzerland...
You will soon be receiving E-mail from Double Above The Knee amputee members of Stumps 'R Us.
They are all doing well and have gotten on with their lives including boy friends and marriage in some cases.
Physical therapy and a Certified Prosthetist that fits you PRECISELY will open a new, successful path to a new life.
Please keep us informed as to your progress.
You are not alone!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, June 09, 2008 at 02:43:23 (GMT)
a
few weeks ago i was in a bad car accident which left me a double above
knee amputee. i just had the hopefully last surgery on my right stump
and soon prothstetics will be fitted.
i live in switzerland and i have not found a single support group in my country so far. that's why i want to join your group.
i'm very scared concerning the prothstetics......scared of the pain,
but even more scared of leaving the house and be confronted with the
looks of the people outside.
i definitely need some support right now so that i can look at the whole thing with a lil bit of humour
sorry about my long rant/whine. what do i have to do to join your group?
thanks very much!
catherine <alesias.wings@yahoo.de>
Switzerland - Monday, June 09, 2008 at 02:36:12 (GMT)
Laura in San Jose
Please consider an ERTL Procedure. The details and the Orthopedic
Surgeons qualified to perform the procedure is spelled out on page one
of this web site.
Several Stumps 'R Us members have had the procedure with remarkable success. I will E-mail you the names tonight.
The only prosthetist I can recommend to you is Certified
Prosthetist Wayne Koniuk of San Francisco Prosthetics. He specializes
in a perfectly fitting prosthetic device. He happens to be my
Prosthetist as well.
Contact Wayne at:
San Francisco Prosthetics
324 Divisadero Street
San Francisco, CA
(415) 861-4146
I made the same decision you are contemplating 38 years ago. I never regretted the decision to amputate.
Dan Sorkin <DanSorkin@comcast.net>
San Francisco, CA USA - Saturday, May 31, 2008 at 02:46:56 (GMT)
I just spent some time on your wonderful website Stumps R Us. It was very encouraging.
I have survived 12 leg surgeries following being diagnosed with
bone cancer in my right femur 19 years ago. The last one was done on an
emergency basis to remove an artificial knee with a massive staph
infection, two weeks ago.
I am contemplating resisting my surgeon's advice to have yet
another reconstruction (which will inevitable lead to more surgeries
later on) and instead have an amputation.
I live in San Jose,CA. Do you or any of your community have a
recommendation for either a surgeon or a prosthetist in the south bay?
I would like to talk to some amputees, doctors, and prosthetists before making my decision.
Thanks so much for any information you can provide
Laura Ellingson <lellingson@scu.edu>
San Jose, CA USA - Saturday, May 31, 2008 at 02:37:26 (GMT)
I
like the matter-of-fact, cheery tone of your site and hope that you or
your members might be able to answer a very unusual query.
I'm helping a baby who was abandoned at birth in Vietnam and mauled
by a wild animal, resulting in the loss of his genitals and right leg
from the groin.
He's now 22 months old.
We are trying to secure funding but need a cost estimate. Any idea
how much decent prosthetic care might run for an infant (per year), and
how many limbs/fittings he'd require until grown?
For more details, please go to
http://help-thien-nhan.blogspot.com/
http://help-thien-nhan.blogspot.com/
Any ideas you have are appreciated!
Thanks
Mail: CTY SEA Design
675B Nguyen Kiem Street
Phu Nhuan District, HCM City, Vietnam
Tel: (84-8)412-0985; Mobile: 84-903423978
Elke Ray <elkeray@yahoo.com>
HCM City, Vietnam - Friday, May 30, 2008 at 12:31:28 (GMT)
An
old friend had her legs amputated AK about 10 years ago. Today I saw
some news about monkeys controlling prosthetic limbs with their brains.
I got on the web and - although it is not directly related to the news
- I found out about the Otto Bock C-legs.
My friend uses high-tech but not computer controlled prosthetics and
walks with with one or two canes - although stairs etc give her great
problems - for short distances, e.g., from the car to a store or to
work.
Do you know of Double AK amputees who have had much luck with the
C-legs? I'd like to do some research on this before I mention it to
her.
Best
Robert Flood <rpfecon@gmail.com>
Washington, D.C. USA - Friday, May 30, 2008 at 02:27:05 (GMT)
Lorie Tatum...
Indeed you are correct...women & men are different amputee's.
Yes we want our prosthetic limbs covered and to look good {BUT} also
function properly.
Are you telling us no-one will be able to tell you are an amputee?
Who is making your cosmetic covers?
I would love to know.
Thanks
Ann Gillian L/BK <lgillian@windstream.net>
Ohio USA - Thursday, May 29, 2008 at 20:28:20 (GMT)
Ron Webber in Savannah, GA...
The best of luck with the Coastal Amputee Network. It is a great name & a great idea.
I only wish more amputees would do what you did in jump starting another needed Amputee Support Group.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, May 28, 2008 at 14:30:24 (GMT)
WOW - did I just enjoy the last 2 hours or what -
Reading the Stumps R Us GUESTBOOK of course.
I have been an left AKA since April 2004, from an unusual running accident, but that is another story (everybody's got one).
I attended the ACA national convention in Atlanta last year and
what a blast that was and I promised myself that I would come home and
start a much needed Amputee Support Group in Savannah, GA (a far piece
from U). So I finally decided 48 weeks later to get off my tail and do
it.
Today it became official, the Coastal Amputee Network, was born,
and in less than a day, I wrote press releases, contacted speakers (a
Local PGA professional, with 2 leg amputations, who has been featured
at Walter Reed Hospital), O & P support, DME folks and everyone is
Happy and so am I.
I am paying for the first meeting place at a state college, just so
everyone feels comfortable with the fact that there is no under the
surface for this group and no one is sponsoring it.
All day I have wonder if I was crazy until I happened on your website.
Dan you are the man in this crazy world and you are right, "It is just
an inconvience."
God Bless you and pray that July 10th, 2008 is gonna be a Wild and Crazy time.
Ron Webber
5501 Woodland Drive
Savannah, Ga 31406
912-313-1711
Ron Webber <coastalamputeenetwork@comcast.net>
Savannah, Georgia USA - Wednesday, May 28, 2008 at 14:26:19 (GMT)
I
drop by this site every 6 months or so. Today I read of several people
with pain, though much greater pronounced, similar to mine. Usually I
just have a mild electric tingling, which occasionally increases to
feeling Im attached to a power transformer shooting into my stump
through my head. If it continues for more than 3 hours, I'll take a
pain pill.
I'm fortunate to have a high pain tolerance.
My prosthetic maker told me of another client with similar pain which
prevented her from doing almost anything. She got a Botox shot and it
stopped her pain. He said perhaps some people would need them more than
once, but that she's walking now and doing fine.
Additionally, two other information bits. Due to the fact I got a job
last year, my state vocational services paid for my latest foot so I
could continue to be a productive member of society. It's a potential
source for others who can't get health insurance. (My last quote was
eight years ago, through the state, of $420/month, with a $3200
deductible. I decided to eat instead.)
Though I haven't seen him in eight years, my doctor was the best!
Thomas Moore in Atlanta, who was head of Orthopedics at Emory
University, and is now head at Grady Hospital. Though a severely
underfunded public hospital, it has an amazing staff, and Dr. Moore
saved my knee and my life. I heard in his residency he specialized in
amputation, and it showed. When I developed a bone spur, he cleared his
schedule to perform surgery the next morning. Great surgeon, and a good
heart.
I'm bk (due to a car twisting off my foot against a lamp post eleven
years ago - hey! I'm alive). I'm also part of that half of one percent
who has muscle control.
I got a new prosthesis last week, which works by vacuum.
The liner is an Iceross Seal-In, ribbed with five rings to create the
air seal when I push into the prothesis, air pushed out the valve. The
prior three plus years, I had a pinlock. Does anyone else out there
have this style? It feels very different, I suppose because the contact
is lessened. At night, I initially also have red impressions on stump
from the pressure, which of course fade out. I'm hoping with this leg
to finally run again, and ride my bike more easily, without the wad of
material behind my knee, but I'm hoping the tingling sensation I feel
now is the same as before, and not circulation.
It's Memorial Day, so I'll be calling Kenny, my prosthesis maker, tomorrow, but I'd like to hear from other amputees.
(By the way, if anyone is near New Orleans, Bayou Prosthetics is wonderful.)
Thanks for a useful site.
Naomi
New Orleans, LA USA - Monday, May 26, 2008 at 20:14:27 (GMT)
Chris Cosgrove in Dogpatch, AR
A Stumps 'R Us Survival Kit is "In The Mail"
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, May 25, 2008 at 01:56:53 (GMT)
I love your web site and all the cool advice and info on it.
I was in a really violent accident last March where the p/u truck I was
driving was t-boned on the passenger side at high speed resulting in my
left arm being sliced off above the elbow by the seatbelt that's
supposed to protect you during things like that.
My postal address is:
HC 73 Box 12A Dogpatch, AR 72648
Chris Cosgrove <lovetheblues501@hotmail.com>
Dogpatch, Arkansas USA - Sunday, May 25, 2008 at 01:54:18 (GMT)
Request
for references for surgeons with a high level of experience with stump
revisions and will take the advice of a prosthetist prior to surgery
I have been a LBKA for the last 31 years. I have been very
fortunate to have had a minimum of problems over the years and was
lucky enough to find Jim McKean, CP, here in Austin back in the early
90’s.
In 06 it was discovered that I had developed a very large bone spur
over the last 30 years and it was pressing on nerves in my stump
causing it to go numb. I decided that I had to have it removed and
figured that I would have the surgery, heal, get refitted with a new
leg and continue on as before.
Well it hasn’t worked out quite like that.
I have really had a hard time getting back to where I use to be and it
sure isn’t for the lack of trying of Jim and the other folks at Hanger.
My surgeon really wanted to be minimally invasive and removed the spur
and left the other side of the stump as it was. I now seem to be
getting really loose skin on the non surgery side and it wants to fold
over creating painful creases by the end of the day. I have the uneasy
feeling that the only solution to this will ultimately be surgery.
I had to take off over two months from work last year to heal from the
spur removal surgery so I don’t want to do anything immediately. Right
now I just want to gather some information. I would like to ask anyone
out there if they know of a surgeon that has a good reputation for
specifically performing stump revisions.
I live in Austin, TX, so I have could easily travel to San Antonio, Dallas, Houston, or Oklahoma City if necessary.
This would be a last resort but I am very motivated to get back to the
level of activity and comfort that I have had over the last 30 years.
Thanks in advance for any advice or opinions you may have.
John Hamilton <john.hamilton@roche.com>
Austin , TX USA - Tuesday, May 20, 2008 at 14:50:04 (GMT)
Hey Len,
This is directed to your wife :)
Hey Girl,
Let me tell you as a bilateral BKA......you do NOT let anyone hold you
down or back as an amputee. My greatest fear as a bilateral was
learning to balance and what I would not be able to do afterwards, and
let my say this.....I ride motorcyles, I wear high heels {not perhaps
as high as I used to wear them, but I STILL wear them.
This spawned many heated discussions with my Orthopaedist and
Prosthetician who continue to argue that prostehesis are for
"functionality" and not for "fashion" and my counter to them is why
can't you have both??? So today, I have many sets of "legs" with
different heels settings....
1} tennis shoes,
2} Flat sandals,
3} 1 1/2 inch heels.
Soooo, I won, prothesis can be for functional and for fashion. It
just took a Computer Engineer Female to show them how to make it
work!!! I wear dresses and skirts and to this day NO ONE can tell.
There is a difference between men and women amputee's.
Men don't care wearing and showing the world their prosthesis and women
want no one to notice their prosthesis. We paint our toes, we wear
sandals, and the cool thing about it is, no one can even tell.
Little changed after my surgery. Although, I had to change my single's
ad after my surgery to say....."Men with foot fetish's NEED NOT APPLY
:)
I lost several toes, then came the complete amputation. All I can tell
you is to be patient and allow yourself to heal completely! Baby your
incisions and take care of your skin.
After my surgery, I asked the surgeon when I would walk again without
assistance and he told my 1 year. I look at him and said, "THAT IS NOT
ACCEPTABLE"! 2 months from the day of my surgery I was up walking
without assistance.
The other factor to help me was my Prosthetician....I went to his
office and the first thing he asked me was, "What did you do before
your amputation?"
I told him and then he told me that EVERYTHING I did before, I would do
again!! Well that's not true, I couldn't walk on ice after my surgery,
but I didn't care, because I couldn't do it before my surgery.
Lorie Tatum <lorietatum1963@insightbb.com>
Foster City, CA USA - Friday, May 16, 2008 at 03:48:09 (GMT)
Hello,
I have received a request for an amputee support group in Spanish. Do you know of any in this area?
Thank you!
Mary L. Garcia <garciam9@sutterhealth.org>
San Leandro, CA USA - Wednesday, May 14, 2008 at 17:20:04 (GMT)
I
am a BK amputee, and would like to know if there is a web page or blog
which compares all the different feet like Springlite, Freedom,
Flexfoot etc. that are available.
Your information would be greatly appreciated.
Jose H. Suarez <jhsuareze@gmail.com>
USA - Tuesday, May 13, 2008 at 17:48:05 (GMT)
Giancarlo in Tumwater
There are support groups listed on the Amputee Coalition of America
website, amputee-coalition.org. There is one in Lacey called the "South
Sound Amputee Support Group", but it does not have contact information,
so check the phone book. There are others also in the general area,
from Hoquiam to Seattle/Bellevue.
There is also an outdoor group based in the Seattle area, Outdoors
For All Foundation, at: 2 Nickerson Street, Suite 101, Seattle,
98109-1652. 206-838-6035. Their website is at outdoorsforall.org.
I too am an AK living in the NW (Longview). I also started as a BK,
but because of infection from the original surgery, moved up (so to
speak) to AK while still in the hospital.
Good luck!
Richard Morgan <Richard.Morgan@steelscape.com>
Longview, WA USA - Monday, May 12, 2008 at 20:54:09 (GMT)
Steve...
Hell on Earth is the only description I could come up with to
describe your pain problems...that & the incompetence of the ER
people you encounter.
The only solution I can offer is what saved my life. Self
Hypnosis. It only works if you are highly motivated to make it work.
Obviously you would be highly motivated.
You have one of two courses to follow to begin this new journey.
1) Contact Medical Hypnotist Seth Deborah Roth at
sethdeborah@hypnotherapyforhealth.com right away. I know her work and
would recommend her without equivocation. She lives and works in the
San Francisco Bay Area.
2) Buy Self Hypnosis DVD, CD or Cassette tapes to teach yourself
the process. That is what I did 20 years ago before meeting Seth
Deborah. You can find the DVD, CD or Cassette recordings through
GOOGLE.
If it were me I would contact Seth Deborah right away.
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, May 11, 2008 at 15:57:28 (GMT)
Hey, Dan.
I've been reading up on the procedure that deadens the nerve
endings during the surgery to remove said limb. One guy says his pain
dropped to about 1% of the the amount of pain he had been experiencing.
Honestly, about the only thing that I can't seem to master is the
intermittent spasms that shoot up and down my legs (mostly down the
legs, and mostly my right hand side, the side most affected by my
spinal cord injury.)
Because I had lots of foot surgery prior to my amputation, when I'm
having the spasms, I feel the old areas that were injured. My right
foot had most of the flesh ripped from the top side, from the ankle to
the toes, and when those stupid spasms hit, they tend to "relive" the
injury, by flashing through my body with violent abruptness. It's a
funny predicament because I had these same spasms before my leg was
amputated. But after 18 years, I can't figure out why I still have such
severe attacks.
After 60+ surgeries, you can obviously understand that most oral
medication doesn't do much for me anymore. (I have a formula for
prescriptions: triple the dosage.---But I don't want to burn out my
liver, either.) For years I have avoided any medication and I just "put
up" with my spasms as they only occurred a handful of times each year.
In the past 3 years, the winters have been excruciating for me as the
cloudy weather can trigger my spasms to start, and then I'm screwed for
the next 8 to 24 hours. I can't handle that every week!! I've been
doing this crap for a long time, and when it gets unbearable, I go to
the ER for an injection. But that's a major hassle and at certain
times, I'll get some jerk doctor who thinks I'm there just to get
loaded, and I'll only get a prescription for some oral meds. Talk about
a waste of time and energy! When it comes to effective pain relief, I
need an injection or nothing else even comes close. The real shocker is
that I'm going to the same hospital I went to when I had my wreck....I
shouldn't have to put up with the imcompetency.
I only want to sleep once I've been "getting zapped" constantly and I'm
worn out from being tensed up and having my legs thrash about for the
past 15 hours or so.
Other than that, I think I'm good. How are you? I'm really trying
to finish my book. I just wish the setbacks could be better managed. I
don't want to do any epidurals; I had a friend that died during one of
those. (That's really not it; my bones are so mangled in the lumbar
region that they couldn't even get the needle to penetrate the proper
area when I tried one years ago, and I 'd rather like to avoid that
unpleasant experience if I could.) Besides, doing repeated epidurals is
no way to manage that kind of problem.
Is there any new way to limit my nerve activity? Sometimes my toes
feel like they're being hit with a hammer, and then it goes away for a
few seconds and returns. Sometimes the pain stays in my thigh instead
of shooting all the way down. It's bizarre and it depletes my energy
level. Years ago, that was one thing I did look forward to. I figured
that after the ampuation, I wouldn't have those damn shooting pains
anymore. I was wrong about that. They are very active today. I recently
had an MRI that confirmed that I've got 2 bulging discs and 1 herniated
disc, nothing new there. But I don't believe that I've got a bone spur
rubbing in the wrong spot, etc.
I just have these intense flare-ups that make me pull my hair out. The bad thing is that my hair is pretty thin these days.
Hanging In by Hanging Out
Steve Bogna <thegreat1@socal.rr.com>
Newhall, CA USA - Sunday, May 11, 2008 at 15:54:19 (GMT)
Well....where
do I start? You have some varied questions, and I will try to reply
with some history of my own, and a little "how I see it" thrown in as
well. This may get long, but please bear with me.....and hopefully what
I share can help.
Some of my history is on the "Stumps R Us" site but I will
reiterate some of the details to make sure you have a better
perspective of where I am coming from.
My amputation occurred in September of 1980, when I was 30 yrs old
(left foot). The surgeon at that time had a choice to make on my leg
due to what was left.....the farm equipment took off the lower part of
my foot including toes with portions of the metatarsal bones remaining.
This surgeon at the time had read about a modified Symes where the
tendons in the shin area of the leg is attached to the pad of the stump
to prevent the backward pulling on the pad and stress to the front part
of the stump pad. Kind of a "fore and aft" motion on my stump pad was
created---I could actually wiggle the end of my stump as I tried to
lift and drop my foot that wasn't there any more. The doctor at the
time said he could have done a BK (transtibial amputation) but felt I
would have more durability and leverage walking with a Symes (a longer
residual limb has more to work with and more surface in the prosthesis
for weight bearing).
The actual amputation happened in late September, and I didn't get
into a prosthesis until February of the following year. That one lasted
until my leg shrank down to get into one in September of 1981....just
about a year after the accident.....so it took about a year for my leg
to atrophy to a "mature stump" shape. That prosthesis lasted until 1998
(it took a year in 1998-99 to get used to that new prosthesis) when I
started running for added exercise, and my stump lost more volume to
the point I needed to get into a new socket.
Now some comments on the pain level......the initial accident was
ugly....with limited technology at the time to manage pain....the
strongest stuff I got was demerol. I had phantom pain from the get go,
and continued to be very tender throughout the years. The doctor told
me one of the benefits of a Symes was that it was long enough that if I
had to get up in the middle of the night to go to the bathroom or
whatever, that I could just hobble on the end of my
stump......Ha-Ha.....I could never put more than about 10% of my body
weight on the end of my bare stump. The area in the front of the stump
pad where the tendons in the front of the leg were attached continued
to be very sensitive, and never did toughen up with the years. Cold
temps made it extremely sensitive, and doubled the phantom pain
activity.
Since I tried to continue to farm for the next few years after the
accident (I had lots of livestock as well) I had to be on it in all
kinds of weather outside. The first year in the two prosthetics were
very tough, because the stump was continually changing, and was always
rubbing blisters. Every visit to the prosthetist created a need to
visit another time or two just to get the socket to fit better. The
more I was on it in the first few months, and that year, the more
phantom pain I had, and the more pain overall I experienced....but at
30-31 years of age.....I just tried to put up with it. And over the
years as I tolerated the prosthesis and the pain....and got out of
farming......then and now into sales.....I am not forced to be quite as
active and can manage the physical demands.
Now to be sure we are talking "apples to apples" by what I
understand as a Symes amputation, and what I had was where the tibia
and fibula (lower leg bones) are intact and the stump pad is the part
of your heel tissue that the Achilles tendon is attached into. The
process is named after the doctor that originated the amputation in the
1840's in England.....a son-in-law of another famous British doctor.
(sorry, not to be too anal, but wanted to be sure we are on the same
page)
Now on to the near past....about three years ago....in April of
2005 my stump became VERY tender....to the point I could not walk on it
without terrible pain. As a few weeks went by a blister on the end of
my stump developed and peeled off, and a large crack in the stump pad
remained.
I visited a doctor in the practice I had originally gone to with
the accident, only a much younger doctor since my original surgeon had
retired long before. X-rays proved to show that I had calcium deposits
in the end of my stump...in the soft tissue of my stump pad. Those
calcium deposits along with the cracked skin caused the pain. I felt
that if I could get the skin to heal back up, that the pain would
subside. (People with intact feet have heel skin cracks that come and
go, and I thought that I could get my pad to heal.) By October of that
year (2005) the skin had healed quite well, and I thought I was on to
beating the problem, but with cold weather setting in, the skin cracked
open again (by Feb 2006) and I was back in terrible pain with the open
sore and awful phantom pain......someone always wanting to drive a
knife into by big toe that wasn't there, along with lots of other
sensations.
So I went back to my doctor I was visiting, and he suggested doing
a BK revision. I was running away (in my mind) from that choice,
because the first amputation was so painful I vowed to not live through
another amputation. From that Feb-Apr-June time frame I was fighting to
get that stump pad to heal back up, with little success and LOTS of
pain....I was physically going downhill. By some act of fortune and
divine guidance I came upon the Stumps R Us website, and Dan Sorkin
emailed back to me about the Ertl Reconstruction website.
I pursued William Ertl at OKC Med Center and had surgery in July 2006
to reconstruct the stump into a BK....the very thing I feared.....and
am doing very well with the resulting stump. I have about 1% of the
phantom pain had experienced before, and get around very well with the
prosthesis I have now. Mobility and balance are as good as what I had
with the Symes.....but it does take more energy and effort to get
around.......one burns about 130% of the calories as a BK amputee
compared to an individual that is intact.
So the original Symes did serve me fairly well for about 26 years, but
did outlive its usefulness according to some friends with medical
background. My need to go to another reconstruction surgery was
necessary just due to the normal "life" of the Symes amputation.
The other piece of the whole equation is to go to a reputable
prosthetist that listens to your needs and is willing to keep working
with you to get the prosthesis to fit you. If the person isn't willing
to hear you out, find one that will. The prosthetist is as important
(or maybe more so) as the doctor in this whole thing!
Now, with all of that said......can I say go out and get an Ertl?
Well there are a lot of people that sing the praises of
it......including me.....but you have to be the one that decides it
yourself......and if you do......go to one of the Ertl doctors that get
it right the first time.....don't go to a doctor that does a modified
version.....you can read on Dan Sorkin's website of the many folk that
have tried that and came out needing more modification. Get it done by
an expert the first time.
That is enough rambling from me for now. Hopefully I have answered
some of your questions. If you would like to talk in person, and you
have a phone I can call you on.....I have nation wide calling on my
office and cell phone.....send me your number and I will call
you.....at a time that works for you.
Here's hoping all of this noise has helped a little bit, and let me know if I can help in any way.
God Bless.
Dave Paschold
402-423-0308 office
402-239-6947 cellular
Dave Paschold <dlpaschold@landolakes.com>
Lincoln, NE USA - Thursday, May 08, 2008 at 02:59:14 (GMT)
My
11 year old grand daughter, a below knee amputee, is going to camp for
the first time. The type of prosthesis she is now using does not stay
on while swimming.
I wonder if anyone has had any experience with the dry pro prosthesis protector?
Is it durable?
Does it keep the prosthesis on? etc.
Thanks
Libby Appley <raylibby@mvtel.net>
Mountain View, Arkansas USA - Thursday, May 08, 2008 at 01:09:40 (GMT)
I
have been a symes amputee for about 2 years due to a motorcycle
accident when I was 16 that left my left foot mangled. I am now 56 and
am having trouble getting a prosthesis that I can wear more than a
couple of hours.
I have noticed by reading from your web site Stumps R us that a lot of
symes amputees seem to eventually opt for a higher amputation.
Did I make a mistake?
I was told how great it was going to be and I would be able to do
anything I want but am not getting to that stage. Seems to be getting
worse.
Can you get me in touch with someone who has gone this route and tell me the reasons for opting for another procedure.
Thank you!
Charley Whisner <charleywhisner@comcast.net>
USA - Thursday, May 08, 2008 at 00:57:24 (GMT)
Can
you send me some group addresses in Ventura, Santa Barbara or West
Valley (calabasas, etc.) since I live close to these areas?
Thanks
George Musser <gmusser@socal.rr.com>
Southern, California USA - Wednesday, May 07, 2008 at 18:36:49 (GMT)
My
right leg was amputated in 2004. First BKA, in June, as a result of a
kayaking accident ... then AKA, in August, as a result of infection
that the VA missed.
I have tried to behave as if my limitation is more of an inconvenience,
rather than a disability. I play basketball in a league while in New
York, and was quite active. Since I moved out to Pacific NW, things
have changed. A lot less transportation. A lot of cordiality, but very
little intimacy.
I have kayaked the south Pugent Sound, and that was okay, but lonely. I
have also tried to snow ski, and that turned out to be a disaster. I
have a prosthetic, but my walking is limited because of painful
infections in my LEFT foot, and my resisdual leg can not take more than
1/2 hour on treadmill.
I am going to start aquatic therapy next week, so maybe I can get involved with water sports.
I live in Tumwater WA, a small hamlet outside of Olympia/Lacey. I have
been out here since June of 2006, and have only crossed paths with ONE
other guy in a manual WC. I am confused and lonely ... for the first
time ever. I do not know how to process being alone.
The AA meetings seem different. There just is not much service that I
can provide, and that was how I have gotten to meet people.
I am closing out my 24th year of abstinence.
I have tried traditional churches, but I just can not get into it. A
friend in New York suggested that I check out 'Stumps-R-Us' as a source
of PHYSICAL activities.
What to do .... now, please.
Giancarlo <Chuckfurer@aol.com>
Tumwater, Washington USA - Tuesday, May 06, 2008 at 23:13:39 (GMT)
2 questions:
Do you know of any consultants to give us some advise on remodeling a house for a double amputee?
Any list of contractors?
Thanks
JoAnn and Frank <moffittbusichio@yahoo.com>
Contra Costa County, CA USA - Tuesday, May 06, 2008 at 02:42:37 (GMT)
Please review this: It might be of some worth
I've been reviewing alot of the postings, and I am amazed to see how
many people have trouble getting a good fit for their legs! (I'm sure
this is less of an issue for arm patients, as you are NOT bearing
weight on it, etc.)
DUDE! I know you already know this but the proper fit is the
essential key element in achieving a painless product!! It's the fit
above all that determines if the patient will be a happy person---I
know this to be true.
I thought my unique situation created what I thought was a rare
problem in obtaining a good fit. I have to rotate my pelvis in order to
walk, due to my limited range of extension in my legs. So, this
twisting motion has to be taken into account so I don't run into a
problem with friction, etc. I'm sure there are guys out there that have
a BKA but they walk so well that you cannot even notice! Let me tell
you, I'm not one of those guys. My gait is probably the worst possible
gait that would allow a person to still get around. With an artificial
limb, you can imagine the extra complexities. Enough boring details!
What I am getting at is this:
for people in Southern California, (I guess I should say Los Angeles Area)
Jeff Vranesh of Reseda Prosthetics is very skilled, and the 2 of us
have figured out a bunch of my problems. I've had at least 5 legs made
by Jeff. I've done the split-toe (No, not camel-toe...) Flex foot,
(with the air-bladder for adjusting the stiffness-a waste of time...)
and others. I switched back from the ratching pin system because,
although it allowed for better flexing of the knee because the rear of
the socket can be cut really low, (Something I requested to allow me
better range of motion, mostly for rock-climbing) I didn't like the
fact that I would always manage to accidently bump the release button
at an inconvenient time. That in itself wasn't really the problem: The
fact that I knew it could happen really bugged the s*** out of me, so
it was sort of "on my mind" all the time. It's bad enough being a
gimpster; nobody wants to worry about parts coming off, too. I tried it
for a few months, and never got over that nagging feeling, so I told
Jeff we needed to go back to the suction/liner style. Jeff hates the
fact that I burn through the sleeves pretty often, but it is what works
for me. I have Medicare part "A" & "B", and I have never paid Jeff
a penny for any of his services. He personally delivered to me on one
occasion a sleeve when I couldn't get over to his office. I get about 2
sleeves a month from him. Sure, I could use more, but the price is
right, so I try to get my sleeves to last as long as possible.
The guy is dedicated, he doesn't drive a big fancy car, and he
cares about his finished product. Of course, he can't build your leg
for free, but if he could, he would. I think he takes most any type of
insurance that has the proper coverage--a rare thing today!!!! I'm so
glad my wreck happened back in the day when you didn't even know how
much your medical bill was, provided that you were covered--The
insurance company just paid the bills.
Another point to consider: The sleeve system just feels a bit more
snug when it's working right, and to me, when the leg fits well, I tend
to not notice that my leg stops just below the knee. When my leg fits
perfect and I walk and walk and walk, I feel like I'm tired all
over--in both feet, if you know what I mean. If the leg has piston
action, you deal with it, but it definitely lacks in the comfort zone.
With piston action, you get "reminded" of where the leg ends with every
step since you feel the rubbing action. It's just a few details but
they are critical factors in getting the prosthetic to be a tool, not
an impairment. You wouldn't go to work barefoot, would you? (Only if
you were a surfing instructor...) The leg is like a shoe, it's
something you need. Actually, my leg is great for playing tricks on
people. I wouldn't have that attitude if the leg bothered me, so it's
ultra important to work out all the bumps.
The pin system doesn't really suffer from piston action, but to me, the
top of the leg feels too loose. And that, combined with my uneasy
feeling that the release button would let go, this prevented me from
liking that configuration enough to stay with it.
Anyone who needs some help can call his office (818) 993-5441
Jeff Vranesh Reseda-Prosthetics 18441 Bryant Street Northridge, CA 91325
www.resedapro@aol.com
I'm sure if you can get to his office, he'll do the rest!
Enjoy what you can.
Steve Bogna <thegreat1@socal.rr.com>
Northridge, CA USA - Tuesday, April 29, 2008 at 22:14:06 (GMT)
My
girl friend in her late 50s, had an LKD amputation in ’05. She is fit,
in excellent health and was very active physically prior to the event.
Although her prosthesis seems satisfactory, she walks very slowly and
usually with assistance from a companion on one side and a cane on the
other. Being aware of the risks of injury particularly to her hip, she
has a great fear of falling. She feels the need to consciously maintain
active mental control over her walking process.
We have discussed her exercising perhaps for an hour every day
using a fitness treadmill with side handrails for the purpose of
improving and developing greater confidence in her gait.
Is this a reasonable way to address her situation? Are there treadmill recommendations for this purpose?
What are some alternative solutions to dealing with her fears and gait?
All suggestions and recommendations are appreciated.
William Alfred <walfred@gmail.com>
Pittsburg, CA USA - Thursday, April 24, 2008 at 20:34:41 (GMT)
I
hit a car head-on with my motorcycle resulting in an impact force of
over 110MPH. I had 44 broken bones, spinal cord damage, and massive
internal injuries, but I was also 16 at the time.
I had a ruptured spleen, collapsed Right lung, torn stomach wall,
ruptured bladder, I lost 18 units of blood from a severed femoral
artery.
I have had 64 surgeries, the last one in 1990 when I chose to amputate
my right leg to “get on with life” since I was convinced I could not
salvage my foot to my satisfaction.
Since my pelvis was fractured in 10 places, I had an incomplete
spinal cord injury, mostly affecting my right side. They said I’d never
walk and I’d be in the hospital 2 years. I proved them wrong on both
counts. I was done with them in 99 days (and 41 surgeries) and I went
back to school the very next day.
I rock climb, ride motorcycles, and anything else that I feel like
doing. I now have a set of twin boys, age 10. I’m now 46, and I can
help others get through their own traumatic ordeals. I am writing an
autobiography specifically to address how people let barriers hinder
their progress in life. I refuse to do that-ever.
I am also in the process of developing a portable, heated garment that
people can wear to keep their stumps warm when they are not wearing
their prosthetic device. Battery powered, with 5 heat settings, etc. It
works well for me and I think it might help others, too. If you are
interested in knowing more about it, please feel free to contact me.
Thanks
Steve Bogna <steve@cbdcabinets.com>
USA - Wednesday, April 23, 2008 at 23:55:17 (GMT)
Pin vs Suction
We are all different, but I for one find the pin system to be very
uncomfortable. It milks my stump during the day to where the stump is
elongated and distorted. The pain level commences at this point and
gets quite aggrevating unless I reassemble 1-2 times during the day.
I switched back to a suction socket which happens to also be a
vacuum socket. It is by far the most comfortable system I've used to
date.
The pin is easier to donn and doff, but more uncomfortable during
the course of the day. It's also a pain in the *** to have to undress
and reassemble during a busy day at work.
Neal Seigfried <neal9935@hotmail.com>
Bixby, Oklahoma USA - Tuesday, April 22, 2008 at 00:05:23 (GMT)
I'm a partial-foot amputee and need help and some suggestions.
I need something that can be made by my prosthetist that I can wear in
place of the part of the my foot that is missing. I need something that
isn't bulky and can be worn with a regular shoe.
That is the objective.
My prosthetist has made 2 things for me and they just didn't seem to
work. Any ideas, websites, or products that you know of or may have
used, companies or prosthetist that you may know of in my area. Please
feel free to contact me. I need to know that the product is going be
comfortable to me and something I don't have to worry about coming off
period. That's my fear!
Thank you!
Michael Reed <mreed1123@yahoo.com>
Atlanta, Georgia USA - Monday, April 21, 2008 at 02:46:09 (GMT)
I
was going to UCSF for prosthetic care. My husband got sick and he had
to have open heart surgery so we couldn't get back to UCSF.
We went locally to Hanger. Found out from Hangar that my knee, which is
a C-leg from Otto Boch is a donated leg from someone who passed away
from cancer.
I have had the same socket since I lost my leg last July.
So when we went to Hanger, we thought they would make me a new socket.
WRONG!!!!!
They said a C-leg can only belong to one person!
SUPRISE!!!!!!! They will not touch my leg or give me a new socket, because of liability.
After much research, found out this leg was registered in 2003 and has never been serviced.
My husband and I do not know what to do. We contacted John Crane from
Otto Boch and he said someone should still be able to give me a new
socket. But we can't find anyone.
Hangar wants me to purchase a new microprosser knee, pay 8,000 for a
copay. We don't have one penny for that. Then they will give me a new
socket.
I have a Kiss-Lock for a socket which UCSF started me off with. It is heavy, can't get any clothes over it.
Meg Wolff had me E_mail you a long time ago. She said she has the best leg she has ever had.
Any Advice?????????????????? I just want to walk.
Thanks
Arlene Peterson <Pflagship@aol.com >
Ripon, USA - Tuesday, April 15, 2008 at 16:06:03 (GMT)
John Loring...
I have never used a pin and locking system, but I have had no tibial
pain with the suction socket I've been using since 1982 (LBKA also).
I had considered changing to the pin locking system, and my
prosthetist advised me not too - he said a lot of people complain about
the constant "pulling" feeling
on the end of the stump. I'm sure you know what that feels like.
This feeling does not occur with suction/sleeve style of prosthetics,
at least for me, although I have never heard that complaint from a
suction wearer.
I wish you well with whatever your choice is!
James Prial <james.prial@gmail.com>
San Francisco, CA USA - Monday, April 14, 2008 at 13:39:57 (GMT)
Hi fellow amputees!
To Karen in BC Canada who wants stumpy stuff like t-shirts, mugs, etc.:
There is a site called Cafepress that has all sorts of cool things for
us stumpers! It is at
http://www.cafepress.com/buy/amputee/-/pg_2
For Len in Foster City, CA: There are numerous relief methods for phantom pain buddy. But you might want to start at
http://www.amputee-online.com/amputee/phantom.html
and also check out the reference links here on Stumps.org.
I’ve heard several times from those in the know that if one method
doesn’t seem to be helping, then by all means continue to try other
things. And I’m sure I speak for others on the forum who wish the best
for you and your wife, and her operation this week.
For me: I’m nervous about my upcoming purchase of my definitive leg
prosthetic (I’m a LBKA since last year this week due to an infection
that set in after foot surgery).
Has anyone ever used a pin and locking prosthetic and gone on to use a
suction suspension system? Or vise versa? I have a great deal of pain
in the terminal tibia area of my stump and would like to know which
system is more comfortable over the other. I’m currently using a pin
locking socket.
Thanks!
John Loring <johnloring@comcast.net>
San Rafael, CA USA - Monday, April 14, 2008 at 12:09:18 (GMT)
I have been an active CFII (Certified Instrument Flight Instructor) for more than 25 years.
I am a LBK and have been since 1968.
I have no problems with rudder control or "feel" for the prosthetic placement. In time it becomes natural.
In order to properly make positive contact with the brakes (located in the tops of the rudder pedals) I switch to a Peg Leg.
The Peg allows greater flexability and more accurate placement to activate either the rudders OR the brakes.
In order to earn my SODA (Statement Of Demonstrated Ability) to the FAA FSDO I was given a flight check using the Peg Leg.
Piece of cake!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, March 27, 2008 at 02:12:17 (GMT)
My name is Bill, BKA since 2000 had childhood cancer at age of 14. Lost leg due to radiation tissue
damage. Had revision in 2006 because of osteomyelitis. Had the dream of wanting to fly for years,
took my introductory flight a few weeks ago. Had a great flight was very excited about learning to
fly but, I had a hard time feeling the rudder petal with my prosthetic.
Will this improve with training?
Is their some advise you could give me?
Just found your site I think its a great thing for us amp's
to help each other.
Sincerely!
William Grill <stumpybill@hotmail.com>
Reddington Shores, Florida USA - Thursday, March 27, 2008 at 02:01:55 (GMT)
Dear Longview, Washington
Group Posting would not increase the value of the information or its dissemination.
Thank you for the suggestion...keep thinking!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, March 26, 2008 at 00:01:02 (GMT)
Dear Dan
I came across your site while I was looking for info regarding muscle shrinkage for my bka on the left-I have had since 2004.
Thanks so much for this site. it is very interesting and helpful.
Can you group post by state/country?
RICHARD ZEE SELZLER <richzee2@msn.com>
Longview, WA USA - Tuesday, March 25, 2008 at 23:56:49 (GMT)
Back
in 2004 my husband became a DBKA or as he now calls it "cripple with
attitude" seeing the world likes to put label on people.
Back in 2004 I found a website that sold cool stuff like I'm with stumpy t-shirts, mugs, & licence plates.
At the time my husband did not find them so funny and would not let me buy them.
Well four years later I have decided it is time to have some more fun and buy some stuff but now I cannot find the website.
If anybody knows of a website where I can purchase such stuff please tell me.
Thanks in advance
Karen Seddon <karenseddon750@msn.com>
Kelowna, British Columbia Canada - Monday, March 24, 2008 at 01:36:46 (GMT)
Don In Tara Ontario, Canada
About your situation and the setbacks...it happens. I am an Instrument
Flight Instructor. Several years ago I was scheduled to pick up our new
corporate aircraft in Georgetown, Texas and fly it back to California.
At the time I was Company Chief Pilot
A week before the pickup I fell and badly injured my stump...so badly the doc said I might never fly again.
I limped out of his office on crutches, bought a book on self
hypnosis and proceeded to cure myself in time for the pickup in Texas.
Self hypnosis worked for me! It might for you as well.
About your suicidal chum. Either he will or he won't. His fate is in his hands...nobody else's.
Happy Easter!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, March 23, 2008 at 20:35:01 (GMT)
It's
been a while since I contributed to the support group.
It's been a very long, hard winter up here in rural Mid Western
Ontario. It's been a little over a year since I had the surgery (Left
below knee amputation).. Everything was going well. My spirits were up
and I was doing all that I was told to and then I took a bad fall on
some ice outside of our local Habitat for Humanity.
I was in there buying some steel towel bars and various items I needed to make my life a little easier.
My knee didn't hurt at the time, but a few weeks later I started to
have a significant amount of pain and the surgeon brushed it off as
normal pain from over using my good leg.
Well, here I am several months and one MRI later and I get told that I
have to have some surgery to my good knee and to be prepared for
another bout of physical therapy for a few months.
I've already lost a year's business from my greenhouse and I've already
spent money to get ready for this season, but it looks like I am going
to be crawling.
I hope you guys don't mind if I unload some stuff I have on my mind. I feel like such a failure!
How is that you see so many people in the magazines and brochures
that are running and skiing.. People that have lost both legs and here
I am with one little amputation and I can't get it together.
I have a chum that I was in rehab with who emailed me this week to say
that he is likely to have to have his other leg amputated and that they
had taken his prosthesis away from to ensure that he wouldn't walk. He
told me something that has haunted me ever since, he told me that he
was seriously considering taking his life. I've not had a response to
any of my emails from him and I do not have a phone number or address
for him and I am thinking I should telephone the rehab clinic we both
attended to see if they could help him, but another part of me tells me
to mind my own business.
I have to be honest with you all and tell you I know exactly how this
guy feels. We shared a room together for the better part of twelve
weeks and shared a lot of personal stuff. Neither of us had many
visitors as we both came from northern rural communities.
I don't know what it is like in the United States, but here in
Canada we have a program that helps you with basic shelter and general
needs, but I can tell you that they make you feel like the lowest of
the lowest if you have to apply for government assistance and unless
you are able to afford the best prosthetic equipment and medical
support you best be prepared to work like you've never worked before at
being able to take care of yourself.
I apologize to you all for being such a downer and I think I am
going to have to have a little chat with my Doc to let her know how I'm
feeling and maybe she'll give me the kick in the rear I need to get out
of this funk....
Well, everyone thanks for letting my share. I promise you I am not
the type of guy who would consider topping myself, but I am concerned
with my chum. I do think I will call the rehab unit and talk with the
Doc that was in charge. She will know what to do. I just hope I don't
cause my buddy any more trouble then he already has??
Cheers to all and thnx
Don Levesque <Brydongrdns@netscape.ca>
Tara, Ontario Canada - Sunday, March 23, 2008 at 20:19:40 (GMT)
Greetings.....
My name is Charlie McGowan
I have been a (LBKA) since 2/05/ from diabetes. I'm 53 yeqrs old, and otherwise in good health, but back
in Dec 07, I slipped on some ice and broke my (right) ankle, wich turned into a mess in a couple of months.
Three surgeons tried very hard to save my foot/leg, but it just wasn't in the cards.
I have now lost my right leg (RBKA).
On 2/08, about a month and half out now I will be getting a cast for my right prosthesis on the 25th.
I walked very well with no aids for two years on my
(LBKA). One could hardley tell I wore a prothesis. At this point I'm
very curious about how much different it's going to be walking on two
fake legs.
Other bilateral amps have told me (NO PROBLEM) just be determined. I'm normaly very active so this is important to me.
I would appreciate any advice or input from my fellow amputees out there.
Thank you...
Charlie McGowan <irish_sky54@yahoo.com>
USA - Friday, March 21, 2008 at 13:36:02 (GMT)
Id like to post a question on the website.
Im bi-lateral amputee, left above knee and right below knee.
Ive got a dislocated hip following the original accident and will need some kind of reconstructive surgery and hip prosthesis
I was told today that maybe Ill need some kind of traction before any
attempt could be made to fit a hip prostheis as the femoral head is 7cm
higher than the shattered acetabulum.
Anybody out there ever have this kind of treatment and maybe give
me some information on whether it works and what is involved, how long
in traction etc?
Thank you!
Paddy Lynch <pjkett@gmail.com>
USA - Wednesday, March 19, 2008 at 22:25:16 (GMT)
My
wife is going to have all ten toes amputated next week due to a
bacterial meningitis infection that caused gangrene. It will be done at
a Kaiser Hospital. All her toes are black and dead.
Here are a few questions that some of your members might be able to share with me:
1) Prior to, or during surgery, is there anything that I can suggest to
the surgeon that would eliminate or lessen any phantom pain?
2) Is there usually phantom pain with toes amputations.
3) How long is the average recovery time?
4) What about weight bearing?
5) Do any members have "toe prosthetics?" How good are they, are they worth it?
6) My wife always loved wearing sandels, is this still possible?
7) What about any lotions to help healing?
8) Any helpful suggestions?
Thanks!
Len Duggan <lenduggan@yahoo.com>
Foster City, CA USA - Wednesday, March 19, 2008 at 14:30:13 (GMT)
Hi Everybody,
I saw the posting below from Rick Morgan -- Longview, WA, regarding his
decision to go with a suction socket from a liner/pin model.
I am anxious about this decision I have to make too. It’s time for me
to get my first definitive leg, having had a BKA on my left leg last
summer. I don’t have insurance that will cover a prosthetic so this is
hard-earned money for me. A lot of it!
Right now, I am in considerable pain.
Of course the socket I currently have (liner/pin) doesn’t fit me
anymore since my stump has shrunk etc. But could I get some feedback
from others in this forum on how they faired with their new sockets
when they went to definitive?
What is most comfortable? Easiest to get on? Least problematic?
Those kind of things.
My prosthetist has told me to research the various options. But I don’t
know where to begin without talking to my fellow stumpers who have gone
through this themselves.
Any help would be greatly appreciated!
Thanks!
John Loring <johnloring@comcast.net>
San Rafael, CA USA - Wednesday, March 19, 2008 at 02:50:10 (GMT)
Hi,
I just found you guys on the web. I'm starting to get a little anxious and have been looking on-line
for information.
I am having a right side AK one week from today. I have a great
team here in Portland, Oregon, a surgeon that I know and trust, a
prosthetist, a PT, and a trainer. My care and prosthetic choices are
all researched and planed. That has kept me pretty busy.
Today the enormity of this situation hit me like a train and , well
really, it has been going on for a few days, and now I would really
like to hear from someone that has been through this because hearing it
from the professionals is not the same as hearing it from the people
who have already been down this road.
The injury that is the root of all this was in 1974. I was a structural
steel worker and fell while erecting a steel building in Boston. There
were 4 reconstructive surgeries then and a lot more throughout the
years, so I am not new to major surgical procedures, but the loss of
the entire limb, even a limb that has been nothing but trouble for the
last 34 years, is something that I am starting to have a problem with
fully accepting.
I don't know if I am being clear so I'll stop. But I would like to hear from some fellow (almost) amps.
All the best!
Peter Klauer <peter@touchstonepdx.com>
Portland, Oregon USA - Tuesday, March 18, 2008 at 12:45:10 (GMT)
Saw your note on STUMPS 'R US this afternoon.
I have been an amputee since 1980, as a Symes (off at the ankle)
until July 06. I had reconstructive surgery then, and am now a
BK---left leg.
Times can be tough, and the pain unbearable, but it will improve. At
about 18 months since my last surgery, I am back to about as full of
speed as I can be at 57 yrs of age!
Stay in touch with Dan Sorkin.....he helped me immensely through my
tough times in June of 06 as I fought my "old stump" and before
deciding to have recon surgery in July of 06.
There are scads of people willing to talk and support you......just reach out, like you already have.
Call if you want to talk more.
Dave Paschold
1220 North 80th St
Lincoln NE 68505-2088
402-423-0308 office
402-239-6947 cellular
Dave Paschold <DLPaschold@landolakes.com>
Lincoln, NE USA - Sunday, February 24, 2008 at 03:24:03 (GMT)
Hi,
I am writing this from my fiance's (he is 50 years old) hospital room,
two days after he had his right leg amputated below the knee. I am
desperate for all the resources I can get for him.
For now, his contact E-mail is mine...leah4109@aol.com, along with my mailing address:
Jack Menashe
999 SW 185th Ave
#4
Aloha OR 97006
Thank you kindly!
Pamela Raway <Leah41099@aol.com >
Aloha, Oregon USA - Saturday, February 16, 2008 at 22:54:51 (GMT)
The
Amputee Treatment Center has completely rebuilt their web site and has
really improved it. If you get a chance go into it and check it out,
and please pass this on to others for me.
Thank you!
Here is the site;
http://amputee-center.com/forum/
Jack Pickerd <sparksjwp60@suddenlink.net>
Jacksonville, Texas USA - Thursday, February 14, 2008 at 17:47:11 (GMT)
What an interesting site and I love the name.
My name is Bob(The Builder} and I live and work in Ky. My calendar
age is 57 but I died four times the day I had my accident, so I started
over.
I am four now.
Like Dan I also wrecked a perfectly good motorcycle four years ago. I
lost my left arm above the elbow and suffered a brachialplexis injury
to my shoulder leaving it with limited movement.
I knew right away that I was going to wear a prosthetic and I was going
to make it work. I am now on my fourth arm and am trying to get another
one. To say the least I am tough on them. I hope that this one is going
to have some myoeletric functions.
I was invited to Vanderbilt University to see the ROCKET POWERED ARM in
person. This is the technology that we all need to push development of
new toys for us stumps. They are also working on a powered leg that
actually will push off of the toe and knee. You can go from standing to
a run instantly.
I hope that there are some other “uppies” out there that want to tell stories and stuff.
Life is not a journey to the grave with the intention of arriving
safely in a pretty and well preserved body, but rather to skid in
broadside, thoroughly used up, totally worn out, and loudly
proclaiming...'Wow! What a ride!' I refuse to tiptoe through life only
to arrive safely at death. My bones will mend, my glory may fade, but
chics dig guys with scars.
Thanks for the site.
Bob Tessier <bob@independentbuilders.net>
Cadiz, Kentucky USA - Tuesday, February 12, 2008 at 00:50:28 (GMT)
Greetings from Upstate NY - Actually , NY 125 miles north of NYC on the west side of the Hudson River.
I will be visiting Sacramento, San Francisco and Sonoma/Napa from
the 14th through the 27th (one of my friends is in the area for
training.) I'll be on my own during the day so I'll be looking for
things to do.
I am a left BK amputee. I think I'd like to rent a scooter. Is anyone
in the area to suggest a reasonably priced rental store. I've found
good deals in Florida and Tucson but I've had friends to point me in
the right direction.
I'll be getting in Thursday night and leaving for San Francisco noonish on Friday. A wheel chair would also work.
I don't think I can walk long distances and want to save my "on my feet
time" for places where necessary. Thanks for any assistance.
Karen Schubert <kara3215@juno.com>
Coxsackie, New York USA - Sunday, February 10, 2008 at 23:42:05 (GMT)
A
few months ago I wrote about Monistat chafing gel or powder to use in
socket liners. Well my husband finally found another product that I had
lost behind the bed. I had purchased it about 2 years ago. Now this one
doesn't say anything about controling oder as the powder does.
So here is the address.
http://www.hudsontrail.com/viewItem/46/407/7061/
HTO Low Price: $ 7.99 (S&H)
The Anti-Friction Skin Formula is a unique all natural skin
lubricant created to stand up to rubbing and moisture, prime causes of
skin irritation. It helps stop skin trouble before it starts, and it
helps avoid the need for first aid products. It is remarkably
comfortable and reliably effective. It works in dry, hot, cold, humid,
and even wet conditions - and it stands up to wind, fresh and salt
water.
Prevents: Blisters, Chafing, Dry Skin, Saddle Sores, Cracked Skin, Rashes.
It contains Aloe and Vitamin E
All-Natural Ingredients
Hypoallergenic
I am glad he found it. I'm using this now instead as I'm not a good
one-leg stander these days. I hope this will be of help to someone else
that might need a change of product.
As soon as I get my right leg downsized then I'm to be fitted for a new
right socket with a relief spot so that my bone doesn't bottom out.
I'm 69 and this last 8 months have been a bit on the rough side.
Everyone take care.
Janet Toomey <wjtoomey@sbcglobal.net>
Herington, Kansas USA - Thursday, January 31, 2008 at 19:51:21 (GMT)
Dear Fellow Stumps,
After 13 years in a wheelchair, I had my hips replaced. Considering
you I like to think I had my amputations at the top of the legs instead
of the bottom.
Since my surgery I've lost 120 lbs and hiked, biked, and swam.
Seeing you guys at the Bowling Party Saturday January 26th, 2008
reinforced my belief that we can get it done.
My wife Lucy and I got home in an exciting one day drive on the BMW
Motorcycle/Sidecar. Monday PM I rode 7.2 miles on the bicycle and
Tuesday swam 1 mile freestyle.
I hope to be in even better shape when we see you all again next year.
Curt & Lucy Kovacs
"Nothing is too wonderful to be true..." Michael Faraday
"A rock pile ceases to be a rock pile the moment a single man contemplates it, bearing within him the image of a cathedral."
Flight to Arras, Antoine-Marie-Roger de Saint-Exupery
J. Curtis Kovacs, M.D. <docbabe4u@yahoo.com>
Sun City, Arizona USA - Thursday, January 31, 2008 at 03:41:24 (GMT)
Barb Linder in Saratoga re: MAS socket
Barb,
I too am an AK since 2004, and am currently using the MAS socket,
so while I don't have a LOT of experience, here is my two cents worth.
I went from a liner and pin lock with an ischial (?) containment
socket on my 1st, temporary socket to a suction, MAS style on the
definitive.
I liked the security (no losing suction) of the liner/pin lock
system, but over all, the MAS suction is more comfortable. I was the
first of this type of socket for the prosthetist I had at the time, and
it took us a long time (and the threat of moving to a different
prosthetist) before it was "good enough".
A suction is harder to adjust throughout the day, you have to take
it of and redo it, not just "twist" in the socket for adjustment. But
on the plus side, because it is being suspended from the entire
residual limb, not just hanging off the end, it feels lighter, and the
leg is easier to swing forward.
Of course at the same time, I went from a straight hydraulic unit to a C-leg, compliments of worker's comp.
As long as you have a competent prosthetist, it should be pretty
comfortable. The key is communication and not settling for what the
prosthetist thinks is good enough, but what you find acceptable. You
are paying for this to be done correctly.
Good luck.
Rick Morgan <Richard.Morgan@steelscape.com>
Longview, WA USA - Tuesday, January 22, 2008 at 00:03:24 (GMT)
Rosemary Malarkey Social Worker...
The Barr Foundation Amputee Assistance Fund was established in 1995
through grants from the Barr Foundation. The mission of the fund is to
provide assistance to amputees that cannot afford limbs, have no other
financial resources, and to promote quality prosthetic care for all
amputees. This is accomplished directly by providing reimbursement for
materials and maintenance costs to prosthetists that provide limbs to
amputees who have no other source of funding. This program is a
cooperative effort between the Fund and the amputee's prosthetist to
improve the quality of life of the amputee. Benefactor sponsorships
maybe also made available to those amputees whom have individuals,
churches or business organizations to make tax deductible donations to
the Barr Foundation whose funds can be specifically utilized for a
select applicant.
In order for the amputee to receive an application, they must
contact a board certified or state licensed prosthetist that may be
willing to sponsor them. The prosthetist ,considering sponsorship, must
request the application directly from us by call 561-394-6514.
It is suggested that the amputee be evaluated by the prosthetist
that may be sponsoring him/her, prior to them requesting an application
in the amputee's name. Please provide the prosthetist with the
amputee's name, address, date and level of amputation and telephone
number.
At this time bilateral amputees are not being processed for funding
unless another source of funding from an individual(s) or
organization(s) is participating to share equally in the reimbursement
level as outlined in the application.
The Applicant will be reviewed and interviewed for the screening
process by one or more members of the review committee upon submission
of the application, which is to be completed by both amputee and
prosthetist. The applicants will be considered based on need, first
time for prosthetic rehabilitation, age and general health conditions.
Sponsoring prosthetist must accept our reimbursement levels as payment
in full and provide a six
(6) month warranty for adjustments and components used.
First time amputees will be required to receive gait training as a
condition of the approval by the sponsor, physical therapist or other
qualified personnel at no cost to the applicant.
The application must be completed within 30 days and returned to us
with a $25.00 nonrefundable application fee. We will then have 4-6
weeks to process the application and the prosthetist will be notified
as to approval or denial. If the application is not received within the
30 day period of sending the application it will be cancelled and the
prosthetist considering sponsorship will have to resubmit.
We will request that proof of denial of any other funding resources be provided at the time the application is submitted.
Thank you for your interest, if there is anything else we can do, please e-mail or give us a call at 561-394-6514
Sincerely,
Eva Barr
Barr Foundation
www.oandp.com/barr
www.ertlreconstruction.com
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, January 21, 2008 at 23:16:27 (GMT)
I
am a social worker working with a patient who had a recent bka on his
right leg. Shortly after his surgery he was informed that his insurance
would not cover his prosthesis.
Beyond fighting this decision with his insurance company, can you offer
any suggestions as to where else he might turn for help in funding the
prosthesis?
Any advice would be great.
Thanks,
Rosemary Mullarkey <mullarkeylcsw@aol.com>
USA - Monday, January 21, 2008 at 23:11:02 (GMT)
Your Stumps R Us website is awesome and my family and I have learned a ton from postings.
I am an AKA since 2004, the result of a bloodclot that could not be cleared.
Does anyone have any information pro or con regarding the M.A.S. socket?
My prosthetist asked me to consider this type of socket for a new one.
Thanks for any help
Barbara Linder <buzzbarb@yahoo.com>
Saratoga, CA USA - Thursday, January 17, 2008 at 14:57:46 (GMT)
Test
joe <webmaster@stumps.org>
USA - Thursday, January 17, 2008 at 04:46:02 (GMT)
I was happy to stumble upon your website today.
My mom is a feisty and until-now healthy 92 year old, living with my 94-year old dad in SF.
This week, doctors at Cal Pacific Med Center amputated her leg
below the knee due to vascular disease. She is in a great deal of pain,
even with morphine. And she never complains about pain!
Today she was moved to the Post Accute Services on California Street.
Dan, my mom is frightened and so am I. I fully hope that she can go
home again to live with my dad, with caregivers present.
With so many questions and so few answers, I am hoping that I can educate myself about her options through your website.
If she is able to go home, we must do serious modifications to her "row
house" style home, where the garage is on the first floor and the
living quarters is on the second floor.
So, if I can sign up, please allow me to. My mom is not Internet-savvy.
Also, if anyone has any immediate recommendations about caretakers in San Francisco or remodeling contractors... I am all ears.
Thank you!
Diane Martinet <dianenews@charter.net>
San Juan Bautista, CA USA - Friday, December 21, 2007 at 15:30:35 (GMT)
Almost
4 years after the amputation of my left leg A/K it seems that I must
have a knee replacement for my right leg. Have any of you had this done
and managed to stay active or become active again after the knee
replacement?
I live in Germany where information from my doctor is not really
forthcoming on what to expect..maybe he doesn't know as he hasn't had a
case like mine before.
Thank you. I would appreciate any feedback!
Susan Heim <susan.heim@web.de>
Germany - Wednesday, December 19, 2007 at 15:07:43 (GMT)
Dear Carole in San Francisco...
Please call:
Amputee Car Controls...
Driving Specialties Limited
215 Commercial Street
Vallejo, CA 94589
(707) 553-1515 BUS
(707) 553-1504 FAX
Movable Accelerator Hand Controls
PHCIII Portable Vehicle Hand Controls. Cost $329.50. It can be moved from car to car. Check out
http://www.wheelability.com/labeled.htm
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, December 14, 2007 at 23:45:31 (GMT)
2 questions for fellow gimps.
1) What is the best driving technique for using the left foot? I'd
like to be able to rent cars, but unless there is some sort of portable
left accelerator (which I cannot fathom that Hertz would have), any
tips for left foot driving would be appreciated.
2) Has anyone had a bad experience with hot tubs? I believe I
picked up a whalloping infection at my stump site from my private,
chlorine utilized hot tub.
Thanks so much for your great organization.
Carole McLaughlin <gewina@pacbell.net>
San Francisco, CA USA - Friday, December 14, 2007 at 23:41:20 (GMT)
A Succession of Angels
I was in Orlando, Florida, this week for my prosthetic leg. On
Wednesday evening, I had kind of a magical hour. The prosthetic leg was
fitting very well. So, before dinner I went for a walk by myself from
my hotel in downtown Orlando, along Lake Eola — a straight route
described to me by my sister Ruth, who had taken the same walk earlier
in the day.
I started out on my walking journey, crossing a couple of major
streets. I had to go fast to do that ... and I did. Then I walked
almost effortlessly along this scenic route ... and everything and
everyone seemed to sparkle, myself included. Freedom ... freedom of
movement! The euphoria of walking on two legs once again (after a short
inability) was making me high! I walked and glowed. People smiled, I
smiled back. It was a dry, 75 degrees with a light breeze. Heavenly!
I arrived at my destination, a bookstore (which I later found out
was the last independent bookstore in Orlando). I browsed around,
selecting different titles. I plopped my few selections on the counter
and asked if anyone had any recommendations. A friendly store clerk
named Betsy kindly made some great recommendations. I settled on a book
by Ann Dillard, The Maytrees.
During our interchange, Betsy happened to ask what brought me to
Orlando, so I told her about my leg and prosthetist that I see there
... and, why I had traveled so far. She was very interested so I
explained how the above-the-knee amputees seen on television are not
the norm — they're the elite, the anomaly. That a lot of fantastic
progress has been made in the technology of the knees and feet, but the
socket fit (the part my half leg goes into) is still the crucial part.
The part that has not advanced much. Sadly, socket technology has
lagged behind the knees and the feet. Many above-the-knee amputees are
not walking, or are very limited because their sockets don't fit
properly. Like having a shoe that is the wrong size and filled with
rocks, but you have to run a marathon in it and you can't possibly do
that.
I have found a prosthetist here that is fitting above-the-knee
amputees (AKAs as we are known) comfortably every day. He is committed
to getting it right for the patient. He works until it is right —
without any complaint or blaming the patient, something not many
prosthetists do. His troubleshooting ability and teamwork are something
I've never before experienced in 16 years as an amputee. It's always
been an up-and-down process with the fitting, but I've NEVER worked
with a more positive, compassionate, can-do and will-do person.
Betsy was amazed and said, "More people should know about him." I
thought, "They will." Then she asked, “How did you find him?” I was
surprised by this question, and I had to stop and reflect a minute,
before replying with deep gratitude, "I was led by an angel."
A few minutes later, while walking back it came to me ... it was a
succession of angels ... everyday angels, first Patty Rossbach, then
Judge Farley, Merry Maiberger and Karen Hughes (all amputees). My
succession of angels, people placed in my path along this journey. This
journey that finally brought me to Orlando and to Stan "problems are
solutions waiting to happen" Patterson. His technology is
revolutionizing the fit for above-the-knee amputees, myself included.
It's wonderful. Stan and his team are wonderful.
So, keep your eyes and your mind open ... because many angels walk among us.
www.becoming-whole.com
Meg Wolff <megwolff7@aol.com>
Orlando, Florida USA - Tuesday, December 04, 2007 at 14:34:03 (GMT)
Help please!
Hi and good morning!
Im Gail from Australia that lost limb left leg in car accident and
now been dignosed after getting on with my happy, vibrant life with 3
autoimmune diseases.
The doctors in Australia say my outcome is poor.
Can anyone anywhere help?
They have tried me on dangerous medications to get me into a
remission yet they break my stump down til it looks burnt real bad.I
just want better treatments and not end up in wheelchair as its just
not me. I want my life back.
I would be grateful to anyone that can help. I am prepared to
travel anywhere in world rather than lose more of my leg/maybe other as
joint in right not good now as diseases cause joint deformaties.
No cure yet. The doctors here say amputee's aren't a normal text book case and so they don't know what to do.
Someone must.
Are there other amputees that may have the same diseases that could help? I am so so desperate.
kind reguards
Gail
Thank you even if you read at least and unable to help, yet do hope can!!!
Gail Josephin'a <theprincess01@bigpond.com>
Australia - Thursday, November 29, 2007 at 22:49:31 (GMT)
I Am One Of You!
Hello, I am Lorie Carwile and I was so happy to see your website
and how fun it looked. I live in Louisville, KY and am a bi-lateral
BKA. I wish we had a group like you no-leggers out there.
My e-mail is Lorietatum1963@insightbb.com
Or
Lorie.Carwile@cardinalhealth.com
Lorie Carwile-Tatum <Lorietatum1963@insightbb.com >
Louisville, KY USA - Monday, November 19, 2007 at 20:45:04 (GMT)
Tonja in Oregon,
There are two support groups listed for Oregon on the Amputee Coalition
of America's website. They do not include contact information but they
are:
American Amputee Foundation of Oregon, and a group called OASES.
The ACA has a great website with lots of information and links to other
websites as well for issues dealing with all parts of amputation. I
check it regularly (I am an above knee now for just over three years).
You can also find a regional representative of the ACA in your area through the website who can assist you.
Best of luck!
Rick Morgan <rickanddev@yahoo.com>
Longview, WA USA - Saturday, November 17, 2007 at 16:33:37 (GMT)
My mother recently had her right leg amputated below the knee. She is only 56, she has diabetes and is a smoker.
It all started with her toe, then another then the foot and now the
leg. These surgeries have all been back to back within the course of a
few months.
She had the leg amputation on Nov. 6th, they sent her from the
hospital to a nursing home last night; and of course she hates it
there.
Do you know if there are any facilities that specialize in care for
amputees? She is in San Bernardino, CA , so some place local would be
preferable.
What support groups/ programs are there in this area that can help her (and her family) with this transition.
I look forward to hearing from you,
Thank you,
Elizabeth Gatgens <Elizabeth.Gatgens@Pacificlife.com>
San Bernardino, CA USA - Wednesday, November 14, 2007 at 03:48:43 (GMT)
Tonja Surgoen in Oregon...
Contact Brian Minard in Eugene at (541) 302-8275
Contact Janet Buck in Medford at (541) 608-6595
Brian had a support group there called PACE. Janet is a corresponding member of Stumps 'R Us.
Please let me know if you were able to contact either Brian and or Janet and whether they were of any assistance.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, November 12, 2007 at 23:08:18 (GMT)
I had a BK amputation in January of this year & I am trying to find an Oregon group. Do you have any recommendations?
I also have had a really positive attitude about my amputation
until lately & just need to chat with some people in the same
situation. Thank you for any help that you can provide.
Sincerely,
Tonja Surgoen
Tonja Surgoen <rvf@ccountry.net>
USA - Monday, November 12, 2007 at 23:05:14 (GMT)
ALPS Anti-Perspirant
Model:
Price: $13.96
Alps Antiperspirant with twice the Aluminum Chlorohydrate found in
typical consumer brands to help control sweating within a socket or
liner. ... more info
Alps Antiperspirant with twice the Aluminum Chlorohydrate found in
typical consumer brands to help control sweating within a socket or
liner. Specifically manufactured for amputees. Packaged in an easy to
use spray bottle. 4 oz
Hi Dan,
I went into your reference links and found the following site
Amputee Supply Amputee Supply Company
There was the above deodorant mentioned by another person earlier.
So this should make it easier for those who can't get it through their
prosthesis team. Also it lets you compare their price with this
company's also don't forget S & H charges when buying on line.
Guess I will be doing a lot of surfing with all these reference
links that you have. Sure gives a person something to do when they
can't get up and drive some where to LOOK. I just love to go to stores
and browse.
I gave my driver's license up after my second amputation. I didn't
want to be driving down the street and have a phantom pain hit because
they really make me stop what ever I'm doing.
Well seems like I'm going back to see how everybody is doing and if there are any new members.
Guess I should give a little more info about myself.
I retired at 60 cause I knew that I wasn't going to be able work much longer.
I'm a diabetic. In August 2003 I spent my 65 birthday in a drugged
state at the hospital because they were trying to get the infection out
of my left leg. Well it came down to take the leg and I live or don't
and I die. So our daughter forced the issue with Wes to get him to sign
the papers or she would.
So six months later in February 2004, I was in the hospital again
with the right leg. The doctor took it off to the instep and a few days
later there was complications. I told the doctor to take what ever he
had to cause I didn't have time to get my heel healed.
I figured that I might as well kill two birds with one stone and get it over with.
So I survived and I'm still here. We are a retired US Army family. I retired from civil service at Fort Riley KS.
It seems that after we came back from Germany in 1984 my health just
went out the door. I'm glad I went back to work as it gave me a lot of
good memories when I have bad days. As I'm sure others have had to go
through the same deal when it was their turn in dealing with their
health problems.
When I was in my early 20's my mother gave me a good piece of advice.
"No matter how bad you feel there is always someone who is in worse shape than you." I've held that to be true all these years.
It takes a kindred soul to understand how I feel somedays, because they
have been through it also. It is nice to be able to talk about some of
the things I've been through and not feel that the person on the other
end is being critical of what you are telling them.
Thank you for this open forum
Janet Toomey <wjtoomey@sbcglobal.net>
Herington, Kansas USA - Sunday, November 11, 2007 at 21:56:43 (GMT)
Ann Woolnough in the United Kingdom,
I admire your investigation and detective work regarding the use of
drugs to combat Phantom Pain and the experience of others in the use of
hip socket liners.
About drugs...I use self hypnosis to control Phantom Pain and or
spasms when I get them. Other members of Stumps 'R Us use muscle
relaxants, Bufferin or Aspirin or in one case, Chinese Moxie Sticks. It
is an incense whose smoke seems to combat pain. That method did not
work for me but it does work for Stumps member Karen Chu.
Amputees experience Phantom pain to varying degrees. Some have
excruciating pain...some not at all. Those amputees who have had the
ERTL Surgical Procedure described on page one of this web site
performed by an ERTL trained Orthopedic Surgeon feel little or no
Phantom Pain following surgery.
I have no experience with the hip socket question you posed so I
asked our resident Certified Prosthetist Wayne Koniuk of San Francisco
Prosthetics his opinion. I will forward that information to you when I
receive it.
Thank you for contributing to our online GUESTBOOK!
80 Year Old Dan Sorkin
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, November 11, 2007 at 15:07:00 (GMT)
I entered your site today and found it very interesting. I have a couple of questions I would like to ask.
I had a full amputation of my left leg in May this year. I went
into hospital for a knee replacement and had the artery blocked at the
back of the knee during the procedure. 6 ops in 10 days later I had the
amputation.
Whilst I am coping well with the loss, like everyone I am suffering
phantom pain and my doctor has prescribed Lyrica (pregabalin) a
neurological nerve pain reliever, and amitripyline (usually used for
epilepsy and convulsive treatment).
Due to the concern of taking too much medication, I have now ditched the amitripyline and just taking the pregabalin.
Have any of your group had experience of these drugs?
At the moment I have a full hip type socket and my hospital consultant
has spoken about a silicon (rubber) type attachment for the leg.
Do your group members find this latter method an advantage?
I look forward to any information you can give me.
Regards,
Ann Woolnough age 72.
Ann Woolnough <a.woolnough@hotmail.co.uk>
England - Sunday, November 11, 2007 at 14:43:49 (GMT)
Tanya McCabe Portland, OR USA...
Antiperspirant
Hi, It is me again. I went down further on your web site and found that
someone (Tanya McCabe) was having a problem with perspirant with their
liners.
Same here!
So I found the perfect item at Wal Mart it is called "MONISTAT INTIMATE
CARE". I started with the powder and then quite a time later they came
out with a gel. So now I've had to switch back to the powder because of
my right leg.
I had a pressure ulcer to break open on my left leg, right on the
tip of the bone. I was in a electric wheel chair for a good 4 months.
My leg has gotten bigger because I can't wear a shrinker. In fact I'm
having a bit of a problem using the gel socks that they put you in when
you are first put into a temp leg. But Anthony my prothesis guy says
being up on my legs may help the right get smaller. (Yeah it is a
little.)
So he is talking about taking me out of the pin liner and
switching me to the vacuum system mention below. And since I saw her
letter (Tanya McCabe). Figured I'd add my two cents to see if it will
help her. Also I will ask my guy about the problems she is having with
the vacuum system. So hopefully we can both win on this subject.
Glad to hear she (Tanya McCabe) is on her feet. I've had back
surgery twice lower and neck and I'm not able to stand up straight
anymore. Right now I hope to at least get the tenderness out of the tip
of my leg so that I can put my full weight on the right leg. There are
days I feel just like the old saying "between a rock and a hard place".
Seems the older I get I get to that spot a lot quicker than I did when I was younger. Oh by the way I'm 69.
Janet Toomey <wjtoomey@sbcglobal.net>
USA - Saturday, November 10, 2007 at 03:24:36 (GMT)
Janet Lee Toomey...
You do not have to be a Stumps 'R Us Member in order to post a question or answer.
The answer to any question you want to ask is out there somewhere.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, November 09, 2007 at 21:14:15 (GMT)
CAN YOU POST WITHOUT BEING A MEMBER?
I've read your letters before, but didn't save or inquire about it.
I ran across a lady saying she has lost a lot of her friends because of
her amputation. I'm a 2 X's BKA so I thought I would give her a new
friend.
Thanks
Janet Lee Toomey <wjtoomey@sbcglobal.net>
USA - Friday, November 09, 2007 at 21:11:04 (GMT)
Leslie Krewson in Ohio..
Don't you dare go anywhere else. You found the right web site. Help is on the way.
Dan
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, November 06, 2007 at 14:53:44 (GMT)
I Am A Transmetatarsal Amputee
On july 19, 2007 I had a transmetatarsal foot amputation. I found
your site tonight, but wonder if it is really where I belong. Everyone
else's issues seem so much more serious than mine.
Please let me know if there are others with my type of amputation
to talk to on your site, or if I should go elsewhere, and if so, where.
Thanks.....it seems like a wonderful site!
God bless you all!
Leslie
Leslie Krewson <lkrewson47@yahoo.com>
Elyria, Ohio USA - Tuesday, November 06, 2007 at 14:51:30 (GMT)
Laura somewhere in Canada...
It is if you live in Canada and can't attend the Stumps 'R Us California monthly workshops.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, October 28, 2007 at 14:10:28 (GMT)
Hi Dan,
Re: Stumps R Us (California)
Cheerful Cripples...
Is the 'Guestbook' the 'support group' ?
Thanks,
Laura
Laura <laura_teacher2@yahoo.ca>
Canada - Sunday, October 28, 2007 at 14:08:06 (GMT)
I am using the College Park Trustep at present (trial period).
I'm not sure that I really like it. It is much better on uneven
ground and even a little better when going up slight inclines. However
it is somewhat like stepping down on a block of wood in normal walking.
Not near as comfortable as the carbon fiber heel of the renegade. A
little more shock than I'm used to.
I think the split-toe is the key for uneven ground.It also doesn't have
quite the spring forward feel that the Renegade by Freedom Innovations
has either.
I'm sure that it would just take some getting used to.
I am looking forward to trying the All terrain from Endolite. I'll
report on that when I get it. I told the folks at Hanger that I would
give the Trustep a decent trial.
More later
Dan Hunt <jdldhunt@bellsouth.net>
USA - Saturday, October 27, 2007 at 19:36:26 (GMT)
Has anyone used or know about the Bartlett Tendon?
I just read about it on the O and P Edge website (Oct. 2007).
http://www.oandp.com/edge/issues/articles/2007-10_04.asp
It looks great for riding a bike, which I have done with some limited
success. I would like to stay with my upright instead of moving to a
recumbant.
It also just looks great for all activities.
Richard Morgan <Richard.Morgan@steelscape.com>
USA - Wednesday, October 17, 2007 at 23:10:40 (GMT)
Subject: Alpha Liners
I just got this this morning. It appears that Ohio Willow Wood, has
a recall on some of their liners. Here is the web site to find out if
your liner is the one being recalled.
http://www.owwco.com/linersearch/status.aspx
PEGLEG JACK, Jacksonville. Texas, USA
Pegleg Jack Pickerd <sparksjwp60@suddenlink.net>
Jacksonville, Texas USA - Wednesday, October 17, 2007 at 22:19:08 (GMT)
The
best Rehabilitation Hospital I have found in the USA is the California
Pacific Medical Center Davies Campus in San Francisco, California.
Scott Rome, MD is the Director.
A majority of our Stumps Membership have had extraordinary, POSITIVE rehab experience there.
Dan Sorkin <DanSorkin@comcast.net>
San Francisco, CA USA - Tuesday, October 16, 2007 at 23:26:39 (GMT)
Hi Fellow Amputees...
I just got home after spending a month with about two hundred
fellow amputees from all walks of life in one of Canada's largest, if
not the largest rehabilitation hospital called The Chedoke
Rehabilitation Hospital in Hamilton Ontario Canada.
You have to get your surgeon to refer you to this rehab centre and Dr. Sharon Grad.
Talk about a thorough work-over..
Wake up call is at 6am and if you want a decent cup of coffee you better move your butt.
This program is based on an aggressive physical therapy regime, so when
we weren't in the gym or the pool working out we were snoring lol..
My pull through prosthesis was made for me on location with
plastics and horse hide. They had four of us to a room, sorry Chedoke
is run very much like boot camp, so if you've got a beef with someone
you better speak up and work it out. There are both men and women from
all ages. Spouses are encouraged to help out and generally we all go
home on weekend passes. I live too far away to make use of a weekend
pass, so I was one of but a few people rolling the halls in my
wheelchair, but there are many things around to keep one entertained,
so I wasn't bored.
I found in general everyone got along really well and we seemed to
develop a special bond with one another.
Anyway, I just wanted to share my rehab story with you guys and to
let you know there is help out there for us, we just have to hope our
Doctor's know the best programs for us. (By the way I am eight months
post-op from a radical below knee amputation)
I am going home October 26 to surprise my 90 year old mother by walking
up the front steps of her house and knocking on the front door to wish
her a very happy 90th birthday..... (Anything is possible)
Cheers to everyone from Don in Canada...
Don Levesque <Brydongrdns@netscape.ca >
Hamilton, Ontario Canada - Tuesday, October 16, 2007 at 23:20:14 (GMT)
Janet Stothers in Austin, Texas...
Stumps 'R Us Certified Prosthetist Wayne Koniuk of San Francisco
Prosthetics says, "A well done SYMES would be much better in the long
run. However they can be a difficult cosmetic challenge".
As far as an Orthopedic Surgeon in your area I would suggest an ERTL trained Orthopedic Surgeon.
On the ERTL Procedure section on page one of this web site you will
find ERTL information and navigation to a directory of ERTL Procedure
trained Doctors
Good luck!
Dan
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, October 03, 2007 at 12:45:48 (GMT)
My
50-year-old sister has damage to her left foot caused by blood pressure
medications given her to recover from septic shock. The damage extends
from her toes beyond the ball of her foot.
Originally we were expecting partial foot amputation. Now a surgeon has recommended Symes' amputation below the
ankle because it will give her better mobility with a prosthesis.
Any help you can provide that will help us research this and make a decision would be greatly appreciated.
She has no circulatory problems other than what was caused by the medications needed to save her life.
She lives near Austin, TX; and any suggestions for surgeons in that area would also be helpful.
Thanks,
Janet
Janet Stothers <stothers@sbcglobal.net>
Austin , Texas USA - Wednesday, October 03, 2007 at 12:38:59 (GMT)
Subject: All terrain foot
I have not tried it yet, and I have to admit it is designed and made by
my prosthetist, but the Genesis foot by MICA looks like it would be
pretty good.
Richard Morgan <Richard.Morgan@steelscape.com>
USA - Monday, September 17, 2007 at 22:18:43 (GMT)
Hey Anybody
Any feedback on the Endolite Elite(All terrain) foot? I looked at the
Tru-step and the only draw back my prosthetist and I have is the
replaceable bumpers. She thinks I'll go through 2-3 sets /year. Also
just way more moving parts to wear out.
Does that make any sense?
The other foot she had suggested was the Freedom Innov. FS1000, but
that doesn't look to have enough heel support for me. Who knows?!?
Let me know if you have experience with these feet...please.
Dan Hunt
DanSorkin wrote:
Certified Prosthetist Wayne Koniuk says, "*Inversion-foot turned to as
if to look at the sole of the shoe. Eversion just the opposite.
Almost all of these feet come with a 30-45 day trial.
Check out College Park TruStep
Dan Hunt <jdldhunt@bellsouth.net>
USA - Saturday, September 15, 2007 at 20:55:49 (GMT)
I'm a 49 year old BK for 20 years, advanced teaching skier living in Charleston, WV.
I'm considering purchasing a TRIKKE (www.trikke.com). I would like
to be put in touch with another BK TRIKKE owner before I spend the
$500.00.
Any ideas?
Kevin D. Mann
1523 Quarrier St
Charleston, WV 25311
304-421-6556
Kevin Mann <kdmann2@yahoo.com>
Charleston, WV USA - Wednesday, August 29, 2007 at 03:31:27 (GMT)
Subject: Amputee Bicycling
To whom this may concern,
Hello my name is Kurt Yaeger and I am an amputee (BK). Prior to my
amputation I was a professional bmx freestyle rider, X-games. I have
ridden bikes my entire life. Since my amputation I have struggled with
creating a suitable alternative to having a leg and riding a bike.
I am now in association with a company called ProTon Locks. This company has come up with an ingenius idea for pedals.
The traditional pedal system for an amputee was either a regular
pedal which most of us struggled with or using clipless pedals. Neither
of these systems worked well for amputees. The traditional pedal
offered little or no help in regards to keeping your prosthetic in the
correct position; your foot would slide off or hit the chainstay bar
which would knock your foot off.
The clipless pedals locked your foot in well, however this type of
pedal is hard to "get out of" and creates a dangerous situation.
The new device that ProTon Locks came up with is a magnetic system
that allows your prosthetic foot to remain in place with little to no
effort and at the same time creating an easy removal option if need be.
This is by far the safest and most effective pedal that I have come
across.
I would like to get the word out to other amputees about this product
and have your organization take a look at this. Feel free to e-mail me
or Dan Iller at ProTon Locks regarding any questions that may arise.
Thank you for your time,
Kurt Yaeger
The website is www.protonlocks.com
Kurt Yaeger <lameattack@hotmail.com>
USA - Tuesday, August 28, 2007 at 21:03:11 (GMT)
Hello,
I am a 38 year old B/K amputee in Connecticut. I was in a m/c
accident on 8-11-06 and after 7 months of trying to get the leg to heal
I had it amputated on 3-13-07.
Just wondering if there was anyone else from Connecticut out there.
Send me an E-mail, please.
Ed
Ed Tattoo <tattoo336@hotmail.com>
Northeast, Connecticut USA - Tuesday, August 28, 2007 at 20:53:09 (GMT)
Hi,
I'm Elizabeth from Pittsburg, CA and I'm ecstatic to find a group of cheerful people to connect with!
I'm 43, arthritic, with multiple joint replacements--including 5 of
my right knee alone combating a staph infection I got in 1998. I've
fought and fought, but now I'm finally throwing in the towel. I'm going
to have my right leg amputated above the knee on September 24th.
It's kind of funny to write that knowing the people who read it are
not going to recoil in shock, like everyone else I've told. People ask
me how I am, and I end up comforting them--"Really, it's for the best.
I'm actually looking forward to it." I've found the news can be a real
conversation-killer.
I've lived the past few years with my right leg about 7-8 inches
shorter than my left. With the help of a huge (but light) lift on my
shoe and a huge brace on my knee, I've been able to walk (with
crutches) and was actually up to three miles a day until this last
flare-up of my infection made it clear that this is no life for me.
I was an active, vivacious, professional woman, and I want my life
back. I've sat on the sidelines of my life all these years and now it's
time to get back in the game.
I know this decision will greatly improve the quality of my life,
but my knowledge of what I'm about to face is minimal. It seems I've
found an environment in which I can ask my questions and maybe even
crack my stupid jokes. That's very comforting to me.
Thanks,
Elizabeth
Elizabeth <betseymcquarrie@comcast.net>
Pittsburgh, CA USA - Monday, August 27, 2007 at 12:40:11 (GMT)
To Todd in Pocatello, ID...
Wow, what a story.
I too had a rod in my femur until too much infection caused my
amputation to move from just above my ankle, to just above the knee on
the right side. Mine was the result of an accident at work. When I
tried claiming a double amputation to the State Claims adjuster she
just said nice try, oh well.
Please put up a posting if you find the peg leg or skeleton leg you
are looking for, I would love to have one. My first Halloween as an amp
I dressed up as a pirate (I understand that is a common costume for us)
and just wore the prosthetic I had since it is the modern day
equivalent. The best part was when a 4 year old wanted to know if my
leg was really broken or just part of the costume.
As Dan said, a sense of humor really helps. When I first realized
there were no support groups in my area I debated starting one and
calling it Amputees Anonymous. It would be like AA in that we would get
together, discuss issues we were having, let others know of stuff we
found out and just all around moral support. But it would only be a 6
step program (ba-dum-dum).
Hang in there.
Richard Morgan <Richard.Morgan@steelscape.com>
USA - Thursday, August 23, 2007 at 02:52:36 (GMT)
Todd in Pocatello, ID...
What fantastic survival instincts you had in order to save your 14
year old daughter from serious injury at enourmous cost to yourself.
Your talent for survival coupled with the wit & humor you displayed
here will serve you well.
My leg's off to you!
I had my Certified Prosthetist create a Peg Leg for me to use
whenever I nstruct in airplanes (three times weekly). You can also pick
up from eBay a used metal prosthesis to use at parties and Halloween.
In fact your Certified Prosthetist will probably have a used one he
cannot resell that you could use as a vehicle for entertainment.
About Phantom Pain...
Self hypnosis works for me. Try it!
Good luck Todd. Your Membership package is "In The Mail".
Dan
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, August 21, 2007 at 17:07:28 (GMT)
My name is Todd Bohn todd@bohnteam.com , www.greathomesinidaho.com ,
I am a 41yr old “investment property expert” realtor/hard core biker/father of 7 from Pocatello, Idaho.
I love your site. I just happened on stumps r us tonight while
searching the internet for info about where to find a real peg leg or
an anatomically correct metal skeleton foot (like the terminator) that
I can wear for Halloween.
I’m being fitted next Tuesday for my first LBK prostheses. I
decided in the intensive care unit that I’m gonna hafta have fun with
this to help keep my attitude good. The day after the emergency
amputation surgery I asked the team of doctors at the University of
Utah Hospital if I could take my amputated leg home with me so I could
have it stuffed and mounted with a brass plate saying TODD FINALLY PUT
HIS FOOT DOWN AND HERE IT HANGS.
The doctors looked at me in horror and said “no, we burned it” I said
“well, when I get my car fixed they let me have the old parts.
Shouldn’t I be able to have my defective body parts???”
The looks on their faces was priceless.
My motorcycle and I had a disagreement with a pick-um-up truck that
came around a corner in my lane on June 20th 2007. Needless to say, I
lost the argument. My foot and lower left leg were virtually torn off
by the front fender, I had a compound left femur fracture, crushed
pelvis, my left arm has a compound fracture of the radius that still
hasn’t healed and my left index finger was torn off (they sewed it back
on but it doesn’t bend too well).
I now have a large plate bolting my pelvis together, a rod in my femur,
a plate bolted to the 3 pieces of broken radius in my left arm and I’m
missing 12 inches off my left leg including the foot. When people ask
how I’m doing, I say “ I’m fantastic but a foot short” har, har.
One of my 14 year old daughters(I have triplets) was on the back of my
bike when we hit the truck. I grabbed her with my right arm and pulled
her off the back of the bike an instant before the collision. I landed
on the asphalt on my back with my daughter riding on my chest. When we
were finished sliding, she ended up with a scratch on one shoulder and
one ankle. My biker buddies now call me “Tank” because the tank was
about the only thing left of my Big Dog motor bike after the crash.
Now that I’m off the morphine (the DT’s really sucked) thanks Doc, I am
having constant phantom pain. My missing toes are either on fire,
getting struck by lightning bolts or they feel like I have an ingrown
toenail. I’m going to try that acupuncture stuff. Any other ideas would
be welcomed. The only remedy I’ve found so far is a few shots of
Jagermeister, but the wife says I can’t do that every day. She’s
probably right.
Oh yea, where can I find a terminator foot or peg-leg or other fun attachments other than that boring rubber foot.
Thanks for letting me purge my stump story
Tod
Todd Bohn <todd@bohnteam.com>
Pocatello, ID USA - Tuesday, August 21, 2007 at 16:56:10 (GMT)
David Gissen in Piedmont, CA,
Welcome to the Bay Area. Jody & I moved from Kingston Avenue in
Piedmont (two blocks from Piedmont Avenue) 6 years ago to the
retirement community of Rossmoor in Walnut Creek. We loved it in
Piedmont but Rossmoor had what we really needed.
Please send me your complete USPS home address & telephone
number and by return mail I will Priority Mail our Stumps 'R Us
survival package to you.
Again, welcome to Northern California.
Dan Sorkin
www.stumps.org
Chief Stump
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, August 20, 2007 at 12:15:26 (GMT)
James in Halstead, PA...
My Certified Prosthetist at San Francisco Prosthetics says,
"If you think there is something wrong with the knee, Otto Bock
will send a loaner knee,and check the function for you, they are great
when the knee is under warranty. If this knee is not new you will find
out then . Each knee has a serial under is easy to track.
The socket should be modified to make you more comfortable. Think
about how it should be changed and ask your Prosthetist to get there
slowly changing the socket for a few visits instead of all at once.
Call Otto Bock and tell them of your concern about the C-leg and I am sure that they will help you".
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, August 02, 2007 at 14:42:35 (GMT)
Pegleg Jack in Florida,
Accupuncture works for almost everybody. I am delighted it works for you!
I control my Phantom Pain with Self-Hypnosis. One of the female
Stumps 'R Us members controls hers with Chinese Moxie Sticks. She
lights them and the emitted smoke from the sticks wash over the Phanton
Main source.
It works for her. I tried it. It did not work for me.
Good to hear from you again!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, August 01, 2007 at 00:40:18 (GMT)
DAN,
I am passing this on to you. I went out and had electric pulse and
acupuncture treatment for my phantom pain that I was having in both of
my legs, and WOW what a difference it made, haven't felt my stumps like
this in years and was able to sleep with out using my shrinkers last
night.
And the unusual fact is that I never had to take my legs off, it was
all done up in both ears and you can feel it working as you are sitting
on the table. I had about 8 needles in both ears for about 30 minutes
and I could feel it working on my phantom pain that I would have when
sitting down.
I highly recommend this to all amputees, but do realize that it may
not work for everybody, because each and everyone of us is just a
little different.
PEGLEG JACK
Jack Pickerd <sparksjwp60@suddenlink.net>
Florida USA - Wednesday, August 01, 2007 at 00:34:29 (GMT)
I've had a C-Leg (supposedly NEW) for almost one year but have had numerous problems with it, especially
recent conditions:
1. KNEE LOCK-UP occurs unexpectably and causes me to stumble & sometimes to fall.
Is this a mal-funtion of the micro-processor, the "stance-sensor" or a weak battery or whar?
2. SOCKET (2ND ) The upper hard-shell digs-into my groin area
causing much discomfort. The prosthetists insists that he can't cut-it
back, even an inch, to relieve this pressure for he says that the
socket must extend that far to assure my support. To lessen irritation,
discomfort, I've inserted a qauze pad between the silicon and the
socket.
ANY OTHER SOLUTION?
3.INTEGRITY: Is there a possibility that I've been sold a USED C-LEG
for I don't have a receipt or warranty document to indicate NEW?
HELP!
James Gurn <hesedhouse@epix.net>
Halstead, PA USA - Monday, July 30, 2007 at 20:24:19 (GMT)
Don in Tara Ontario, Canada,
What you are feeling is NORMAL! You have every right to be angry,
frustrated and impatient. From your description it sounds as if you
have an improperly fitted prosthetic device.
Precise fit is EVERYTHING!
No matter how high tech the device is if the socket fit is not PERFECT it will be uncomfortable and cause ulcers.
You have to be aggressive with your Certified Prosthetist in demanding a perfect fit. It does take time so don't be discouraged.
Again Don your venting is normal & healthy. You still have the proper attitude. I can only assure you IT DOES GET BETTER!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, July 28, 2007 at 16:36:27 (GMT)
Hi Dan and all....
Here I am again 6 months post-op Left BK. I think I would be lost out
here on the farm in the middle of no where if it was not for your
support site.
I started off so well right after surgery and was going full tilt
with a healthy, positive attitude and all, but all of a sudden I
started to get ulcers on my stump caused by my ill fitting temporary
prosthesis and a limited medical support team here in the Bruce
Peninsula. On top of it all my left leg is swollen and so painful that
I am not able to transfer very well, so I am for the time being wheel
chair bound.
I finally got to see the surgeon mid July and he told me the sores
were caused by the prosthesis and sent me to the Chedoke clinic in
Hamilton Ontario.
I am not able to drive anymore, so I've had to rely on support from
volunteer drivers in my community. It is an eight hour drive round trip
and I am pooped from having to go back and forth from Hamilton three
days in a row.
The specialist there has come up with a plan for a different type of
leg for me, but we have to wait for funding approval and then they will
admit me to the clinic for a couple of weeks for fitting and to go
through the rehabilitation all over again.
I guess I wouldn't mind so much, but I am out here on my own and I sit
day after day doing the few exercises suggested to me by the team. I
sound like a real complainer, but I guess I am just a little worried
about how I will be able to get back to work and take control again.
I think I am a decent Christian man, but if I never see another Doctor or hospital it will be too soon LOL..
The really dumb thing about all this is that I am not worried about
myself, I am worried about my dogs. They need exercise and fresh air
and I can do very little to help them right now.
My big question is.. Our we allowed to have down days? our we allowed
to get angry? I need to give myself a big kick in the butt and tell
myself to get a grip, but I am finding it harder and harder to do that.
Thanks for letting me vent. I guess I just feel really stupid for allowing myself to let all this get to me.
Feedback would be appreciated and you can tell me to get my act together.
Cheers all Don Levesque in rural Canada
RR3 Tara, Ontario N0H2N0]
Brydongrnds@netscape.ca
Don Levesque <Brydongrnds@netscape.ca>
Tara, Ontario Canada - Saturday, July 28, 2007 at 16:19:56 (GMT)
Dear Fellow Gimps,
I first posted on this forum Wednesday, July 26, 2006 at 13:17:04 (GMT)
I am a 38 year old left AK amputee, I have been since the age of 3. I
wrote asking advice on what to look for in a surgeon as I was planning
to have a tissue reduction surgery on my residual limb to remove the
enormous about of loose flesh hoping that this will make being fitted
with a prosthesis easier.
I posted an update on Thursday, July 12, 2007 at 01:39:10 (GMT) about
finding a surgeon who felt confident in preforming the revision surgery
to remove the large about of tissue that had grown on my stump. I
posted that my surgery was scheduled to be preformed on Monday, July
23rd at 7am. I promised an update to that post... here goes.....
Well, it is done successfully!
Mechele <BryteEyez@aol.com>
West Fork, Arkansas USA - Saturday, July 28, 2007 at 02:24:11 (GMT)
Hello Dan and all Stumpies
Here goes folks I am a LBK and a RTMA so big deal. If you are a leg
amp you put your leg on pretty much the same way I do, unless you are a
double amp or a AK or a Hemi.
What do I like to do......play with my many cats! Yup my daughter
has given me the title of THE CRAZY CAT LADY. I have 8 but will be
giving up one since she no longer gets along with the pride. Or they
don't get along with her, which ever came first. Love to play with my 5
grandchildren when I visit them. When my husband is not deployed or
going to military school in another state I like to see him as well.
You know the truly old saying, "If the Army had wanted you to have a
wife they would have issued you one". No one reminded me of that when
we married in 2000. Am I proud of him...does the sun shine in the
sky????? Yup you bet. Also love to hang out at amp conventions and chat
with folks, do some training of peer visitors for the ACA. Love my job
the one that pays me money, I am a sign language interpreter, and I
enjoy going to Deaf events. That should do it for now.
I live in VA so I most likely will not be showing up for many CA
meetings. Was born in Jackson Heights NY but moved when I was 4, with
my family, to West New York NJ, yes it is a real town. We could walk
one block down from the apartment house to the BLVD and look up 42nd
street. Hey now how is that for a trill a minute. Back in the late 50's
and early 60's it was cool. Now the town is not even an inkling as to
how I can remember it. Times do change.
My husband Bob as you read is in Kosovo right now. Due to come back
to the states around the end of Nov. Where next? What does he wish to
do when he grows up? We are not sure. See this is my second marriage
and his first, get this gals I am 16 years older than Bob!!! No I did
not marry him when I was in HS and he was in kindergarten. We are a fun
couple tend to do our own things separately and together. Our best
friends live on the base of Ft. Belvoir, VA. Their youngest thinks I am
part fairly godmother, part grandmother, part Miss Paula who comes to
her house to play with her.
That is about it for now, hey write back to me, just please but in
your message that you are from the amp group Stumps R Us. Of course I
will check my junk mail since the mail allows all the sexual trash I DO
NOT WANT and then sends stuff I do want to the junk file. Yikes.
See ya,
Paula
Paula Golladay <pgolladay@cox.net>
Belvoir, VA USA - Sunday, July 15, 2007 at 02:32:33 (GMT)
Paula in Falls Church, VA...
There is no fee to join the GUESTBOOK and read and respond to the
entries. Should you ever come to California the Annual Stumps 'R Us
Membership charge is $30 a year.
That entitles you to quarterly issues of our newsletter GIMPY and
discounted member privileges at our monthly Northern California
meeting/events which are posted on page one of this web site.
Our prayers are with your husband in Kosovo.
Dan Sorkin Chief Stump
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, July 13, 2007 at 15:26:01 (GMT)
Hello Dan,
In the way past I did hear of your group and looked at it and then with
my mind leaking out of my ears forgot about it. DUH! I recall that it
was hysterically funny. Aha, glad Ron King brought me back to the site.
So do I need to join to post on the web site? I did read that as I
guest you could post, but does that allow me to post and read all or
does joining, if you do do this, give me other privileges?
I am currently on the Heather Mills List, ok she is not my fave rave
amputee but I like most of the folks on the site. I am also a lister on
the Amp List on Yahoo.
I am Paula Golladay, LBK 2002 from osteoporosis, and a RTMA for the
same reason in 2004. I am 58 and very proud of it by the way, I have a
wonderful husband who is currently deployed in Kosovo this time around.
Mom of two fully grown adults and the grandmother of 5 wonderful grand
kids, all from my youngest daughter.
My homes address is:
Paula Golladay
6031 Madison Overlook Court
Falls Church, VA 22041
(Sorry it would be a long commute to physically get to the meetings, giggle, giggle)
Home phone 703 820 7987 (I am bad about listening to the answering
machine messages)
Cell/Work Phone 703 304 5755 ( I do listen to these messages since it
is business connected put can't answer the phone while I am
interpreting)
Email: pgolladay@cox.net please put in the subject line that you
are from Stumps R Us and I will keep an eye on my in box and my junk
mail just in case my filters send the message to the junk file. Not you
to the junk file.
Hope to hear from you soon,
Active Gimp
Paula
Paula. Golladay <pgolladay@cox.net>
Falls Church, VA USA - Friday, July 13, 2007 at 15:12:05 (GMT)
Hi Dan,
My name is Aimee Dryer. My husband Mitch is an Oneida, NY
firefighter and was injured on April 22nd when a roof collapsed on him
and his lieutenant while fighting a fire at a bowling alley. He
subsequently had his right arm removed above the elbow on May 15th due
to the 4th degree burns that completely severed his ulnar nerve.
We decided as a couple and as a family to have that done instead of
having his elbow fused. We thought that by doing this he would have a
better quality of life with a prosthetic than he would by having his
elbow fused and not being able to move his elbow.
He had his ulnar nerve removed in a previous surgery before the
amputation and we did not know to what extent if any of the use of his
first three digits of his hand.
Since he had his ulnar nerve removed he would never move that the
last two. He was in the hospital from April 22nd. of which he spent
almost three weeks in a medically induced coma, and was discharged to
the Rehabilitation Unit on June 6th. He went home on June 20th - which
happened to be his two year anniversary with the fire depatment.
He had a police and fire truck escort all the way home from Syracuse. It was absolutely wonderful.
Mitch was burned over 20% of his body - all on the right side. He will need cosmetic surgery on his right ear.
While having to deal with all of the other things - I think the most
difficult is his amputation... he was right handed. He seems to have a
good spirit and seems to be coping well but I can see that he gets down
and easily frustrated because he doesn't always see progress. I need
him to understand that it will take time and will not happen overnight.
He is a very stubborn and determined man!
Well - it is late. Thank you for taking the time to read this. Please
feel free to post and have anyone email me with suggestions or help on
anything. We are very very new at this and I could use any advice
people are willing to give.
Thank you very much,
Aimee Dryer
Aimee Dryer <mitchellandaimee@twcny.rr.com>
Oneida, NY USA - Friday, July 13, 2007 at 14:51:03 (GMT)
I
first posted on this forum Wednesday, July 26, 2006 at 13:17:04 (GMT) I
am a 38 year old left AK amputee, I have been since the age of 3. I
wrote asking advice on what to look for in a surgeon as I was planning
to have a tissue reduction surgery on my residual limb to remove the
enormous about of loose flesh hoping that this will make being fitted
with a prosthesis easier.
Now, approx 1 year later, I have finally accomplished what I feared
was going to be impossible. I found not only 1 but 2 surgeon that are
willing and are certain they can remove all of this tissue.
As I stated in my previous post the surgeon who attempted it last
time claimed "too many blood vessels thwarted his attempt." I was
disappointed, hearbroken and was out of my prosthesis for 6 weeks for
no good reason, He did nothing to prevent the residual limb from
swelling (edema??) while outside of the prosthsis for so long.
I talked these Dr's absoultely BLUE. I had a whole page of
questions and did not let them leave the exam room until I felt ever
question was answered to my satisfaction. So on July 23rd at 5am I will
be entering in to the pre-anesthsia room to prepare for by tissue
reduction surgery that will begin at 7am. I am excited, nervous,
apprehensive, and fearful of my expectations based on what the surgeons
told me the results would be.
And a funny thing about it.. is I am also wondering what my life
will be like without the 10 lbs of loose flesh hanging off my left butt
cheek, to actually have a left butt cheek again. and even funnier, I
think I am going to be a bit nostalgic, (I think i am actually going to
miss all that flesh!) I know, I know I am completely insane! lol. I
will post again after the surgery to update once again about the
outcome.
Mechele
Mechele <BryteEyez@aol.com >
????????????, ?? USA - Thursday, July 12, 2007 at 01:39:10 (GMT)
Dear Meg,
Thank you! Your success story was wonderful to read about. Thank
God you are able to not only wear a prosthetic device but as a bonus
you found a Certified Prosthetist that knows what he is doing!
Certified Prosthetists like Stan Peterson in Miami are rare in this
culture. I only know of one other that takes a vital interest in his
patients and is willing and able to spend the time necessary to solve
ALL of the amputee's problems. He is Wayne Koniuk of San Francisco
Prosthetics in San Francisco, CA. Wayne Koniuk and Stan Patterson are
craftsman cut from the same cloth.
Thank you for bringing me up to date on your progress.
Dan Sorkin
www.stumps.org
Chief Stump
Too often we enjoy the comfort of opinion
without the discomfort of thought."
...john f. kennedy
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, July 12, 2007 at 00:08:49 (GMT)
Dear Dan,
I wrote you at the beginning of the year in search of a
prosthetist. Things were not going well for me with my AKA prosthesis
and I was looking for help. (I'm sure you hear a lot of his.) Well,
decided to send you a POSITIVE story as mine turned out that way. Yeah!
You probably don't always here the GOOD stuff!
Recently someone wrote and asked how things were going for me and
what happened with NY? And what was happening with me now? Afterward I
decided to send the reply to you as I thought you might like to know.
This is it!
No, NY didnt work out for me. In the beginning it did, but my
prosthetist wasn't able to maintain the fit as my limb changed. After
another year of travel back and forth to NY every other week(a 7 hour
drive each way from Maine) I got to the point where the leg was hurting
so much I couldn't wear it. With my subsequent trips it didn't get any
better. I was starting to say to my family, "This is killing me."
So, I thought I'd better stop going to NY.
I went for 3 months on crutches which wasn't what I wanted, but was at
a loss for what to do. I got really tired of it, but focused on my
work. Then started doing book signings on one leg and got pretty
comfortable with that, but it was SO hard to get any excercise on one
and I felt given my motivation, good health, good weight, and other
things I had in my favor this shouldn't have to be my fate.
Then I set an intention about what I wanted, wrote it down (sent it to Stumps Are Us) and did more research. Then I let it go.
I didn't think I'd travel to Florida for a prosthesis, but three
months later I did. It's only a 2 1/2 hour flight to Orlando from
Boston (non-stop). There's soon to be a direct flight from Portland,
Maine. And the leg is comfortable to sit and stand on, so no problem
with flying. I couldn't have done that with the other leg.
So, I now go to Stan Patterson at P&O Associates. He has
developed this elevated socket system for above knee amputees. It is a
revolutionizing fit for AKA's, and he's teaching this to other
prosthetists. I rode a stationary bike comfortably and walked a mile on
the treadmill the third day there in a test socket. My good luck
continues, and Stan is very supportive as far as being available if I
have any problems. He is teaching me the system so that I can make
adjustments if I have to. The best part is...he listen's to me. And it
work's out great!
Stan Patterson is an incredible person. Very intelligent,
compassionate, positive...his motto is, "problems are solutions waiting
to happen". And he's really passionate about what he's doing. A born
teacher, he loves to explain things as he knows this system in and out.
He was willing to work with me in spite of problems with my insurance,
since I had already been billed by the other place. He also has a great
team of people working for him and they all work well together.
I walked 2 miles the other day. Haven't done that in MANY years.
Stan believes that I will be running a 5K. I'm going to go see Bob
Gailey (PT for gait training) in Miami when the weather cools down in
the fall.
It's nice to have someone who believes in me, like I believe in myself!
So, it all worked out for the best (though it was a long road). Isn't it ALWAYS?!
Thanks for your comment and concern. I appreciate your inquiry.
All the best,
Meg
Dan thank you too for being "out there" in cyber space to listen to
our requests, inquiries, etc. You do a great service as well. Thank
you! Meg Wolff
BLOG: www.becoming-whole.com ~~~~~ WEBSITE: www.megwolff.com ~~~~~ EMAIL: megwolff7@aol.com
Meg Wolff <megwolff7@aol.com>
Portland, ME USA - Thursday, July 12, 2007 at 00:05:23 (GMT)
Hi!
I am a 50 year old woman who woke up on Feb. 25, 2006 with a my leg
ice cold. I had my leg removed below the knee on June 19, 2006 at the
Cleveland Clinic.
There is no support group in my area. I would like some support from any woman who has lost their leg.
I lost most of my friends because they can't deal with me as a amputee.
Please help,
Sincerely,
Barb Smith
Valley Grove, WV 26060
Barb Smith <Barbkasesmith@aol.com>
Valley Grove, WV USA - Wednesday, July 11, 2007 at 01:51:47 (GMT)
Hello everyone,
Just a one time mailing trying to reach out....
I just recently about 6 months ago lost my left leg below the knee and
since than I have been trying to get in touch with others who may have
similar situations....
Please visit my website:
http://www.artificiallimbsprosthesis.com
I am looking to see if I can help some who may not be able to get a
chance to walk again - some hospitals cover the prosthesis and some
don't -
I have heard so much about people being able to walk again with real good lookings like real legs ...
If you know of anyone who doesn't have insurance coverage and would
like to walk agan - I hear that the prosthesis cost is real high like
about 8-10K
I heard of this hospital in India where they can help. I have been
in touch with the doctors there and I feel that this might help to
avoid high costs and be able to walk again and be able to work again.
Cathie Kaur
Cathie Kaur <allamputees@yahoo.com>
?, ? ? - Friday, July 06, 2007 at 00:53:55 (GMT)
Subject:Ossur seal in sucktion socket for A/K
I have correspond with you in the past since I had trouble using the Ossur sealin for above knee amputation.
Well I finally last November found a Hangar office in Florida that made
a proper fit and things were good. I was however gaining weight so I
started a diet program along with more exercise and the fit becam loose
enough that I completelly lost suction and the leg actually dropped
off!
I was able to recover and hold it on by addingd socks per
instructions and put them under the seal. The leg fit better but
gradually I started to lose suction and the air valve would purge air
on and off. I could feel my leg pistoning.
I went to the local office and they said for now to put socks inside the liner to fix the problem.
I tried that and it helps a bit but a number of amputees who have that system say that is not a good way to do it.
What is your opinion?
One expert recommended I try to place some ring under both sides of the sealin.
Have you heard of people doing that? Do you have any kits that may correct the problem?
Regards
Dave
Dave Lovull <dlovull1@rochester.rr.com>
USA - Monday, July 02, 2007 at 13:57:43 (GMT)
Hi Doug Hollowell ,
I'm 42 and had a hip disarticulation (not a hemipelvectomy) in 2004 due
to a collision with a drunk in a pickup versus me on my bike up near
Lake Berryessa.
While we are definitely a minority as far as amputees go, life does
indeed go on with only one leg. Prosthetics are available, and I have
one, but many HD's prefer to skip it all together, its a personal
choice. They can be very cumbersome, and a lot of people, me included,
find that they can just move faster and more comfortable on crutches
and or a wheelchair. I use both depending on the situation.
I live in a condo with no special adaptive equipment, other than some
grab handles in the bathroom and a shower stool. The key is having good
PT/OT (physical and occupational therapy) after you recover from the
surgery. Those wonderful folks taught me how to live indendently in a
pretty short period of time during my stay at Walter Reed.
As mine was a left leg amputation, the only thing my car has to have is
an automatic, as I can't press the clutch anymore. It was hard saying
goodbye to my 5 speed and motorcycles, but as I said, life goes on. I
still get to go to A's games, and many other things I had always done.
I met a fellow HD right leg amputee and he just taught himself to drive
with his left foot, and he uses nothing special in his car either.
I can't answer the question about funding, as I was active duty Air
Force when I was run over (stationed right by you at Travis actually),
so the VA takes care of me pretty well in that department.
If it's a choice between getting infected and dying, or losing the leg,
I would say the sooner you get started, the sooner you get over the
rehab and get on with life!
Good luck and if you have any specific questions, feel free to email at the address below!
Ed Donnelly
Pt. Richmond Ca
itsed65@yahoo.com
Ed Donnelly <itsed65@yahoo.com>
Point Richmond, CA USA - Friday, June 29, 2007 at 19:56:20 (GMT)
Hi Dan,
My name is Doug Hollowell and I'm a neighbor of yours over here in
Suisun City. I'm 51 years old, and I had my first hip replacements when
I was 20, a result of Ankylosing Spondylitis.
Over the years, I've had revisions of both sides, but my right side has
been the "problem child". Around 1998, I was informed that my right
femur was eroding away, My orthopedic doctors tried adding pieces of
cadaver bone during surgeries, but the problem continued. They even
tried using an entire cadaver femur, with no luck.
Around 1999, I had my right knee and femur replaced. The specialist
told me I was his second patient with a titanium femur, so I knew I was
heading into uncharted waters. Well, everything went great for five
years, until I developed an infection in the right hip, femur and knee.
I've been told that there is nearly no chance of getting rid of the
infection because once an infection gets into the metal parts there are
no drugs that can clear it up.
Since 2005, I've had to have surgeries every 6-8 months to clean out
pockets of infected pus that build up, primarily in my hip. Recently, I
was told that the most successful way of ridding my body of the
infection is to have a total hip disarticulation and, possibly, a
hemipelvectomy.
I'm having a difficult time adjusting to the thought of losing my right
leg. I'm hoping some of your group can give me insight to living life
with one leg gone. I'd also like to find out what resources are
available for making my home more accessible after the surgery.
I suppose, given enough time, I'll adjust to living without my leg, but
I've gotta believe that there must be plenty of gadgets available to
make life a little easier.
I'd also be interested to find out if there are any funds available
somewhere to help defray the cost of changing ones home, car, etc. so
that the adjustment doesn't break a person, financially.
Anyway, I'd like to hear from anyone who has gone through either a hip
disarticulation, with or without a hemipelvectomy. This is a big
decision, and I would like as much feedback as I can get.
Sincerely,
Doug Hollowell
505 Acapulco Court
Suisun City, CA 94585
707-422-1743
Doug Hollowell <hollow7@pacbell.net>
Suisun City, CA USA - Tuesday, June 26, 2007 at 23:24:59 (GMT)
Hello all,
I am a high powerline worker who lost my right leg below the knee
2.5 years ago. I am just curious to see if anyone has had any luck with
Ossur's Proprio foot.
I live in eastern Washington(mountainous) and am hoping this foot will
give me more mobility to accomplish my job climbing power poles? Well
hope to hear from some positive and negative imput,
Thanks for the site. I come to visit often. I have been given this
afliction because my higher power knows that I will strive to be the
best I can be and be a positive example to others.
THANKS SO MUCH
Steve Russ <madmuttly@yahoo.com>
Republic, WA USA - Tuesday, June 26, 2007 at 13:35:19 (GMT)
Hi,
It has been about a year and I still have issues with these Harmony Liners.
I'd like to find a liner from another firm that will work with the
Harmony system. My next system will more than likely not be a Harmony
unit.
I did try the Smith Liner. It does not work very well with the
Harmony System. The Liners made for the Harmony,are just not durable...
I believe the device should not even be sold, due to the durability
issues.
Thanks.
Lee Thomas
leethomas@charter.net (note my e-mail has changed)
Lee Thomas <leethomas@charter.net>
St Louis , MO USA - Monday, June 25, 2007 at 23:25:43 (GMT)
Hi Dan and all;
Here I am again four months post up from a BK amp in Jan. Things were
going great guns with my temporary prosthesis and I suspect that I dove
in too fast and now I have developed several pressure sores on the
residual stump.
My major problem is that I live many hours from medical support. At
my last appointment with the nearest amp team I was told not to wear my
prosthesis and to keep off my good leg as much as possible because the
good leg is very sore especially when sitting still.
Now what?
The latest info from the amp team is to send me to a specialist in
the big city to see about using another prosthesis system that has
softer units against my skin.
I've felt that the temporary prosthesis didn't fit properly right from the get go?
The Doc told me that he didn't think the sores I have are caused by
using the prosthesis, but they didn't invent themselves and they only
appeared after using the temp leg??
I was a little distraught, but I can't afford the lack of
communication between the medical wizards to keep me from reaching my
goals.
Anyone have any tips on a different type of prosthesis that might work for me??
I am a very tall man tipping the scales at just over 200 lbs. ( I am 6' 3)
I enjoy reading what everyone has the courage to share and I welcome feedback.
Cheers all and take time to enjoy the summer
Don Levesque <Brydongrdns@netscape.ca >
Tara, Ontario Canada - Wednesday, June 13, 2007 at 18:05:15 (GMT)
Hi, I'm a Transmetatarsal Amputee (partical foot).
I wanted to know if there is anyone online that is a transmetatarsal amputee?
I currently have a posthetist but I don't think it's going to work
out because he was trying to make a prosthesis for a Syme's Amputation.
I don't have a Syme's Amputation. I told him that I didn't want that.
Then he showed me another type of product called a amputation gauntlet.
It looks like a leather boot that is supposed to fit in your shoe and
it laces up in the front. I'm not happy with that solution either. He
told me that I would have to send the shoe that I wanted it to fit so
they can get the exact measurements for the insert.
But, there is a catch this insert my not fit all of my shoes. I want
something that is interchangeable and will fit in any shoe that I
decide to wear. Is there anyone out there that can give me some ideas
of what to do. I'm starting to become very frustrated because the
prosthetist and I have been trying to come up with something for about
2 weeks now.
Carmen
Atlanta, GA 30316 USA
Carmen Vita-Lopez <carmenvitalopez@comcast.net>
Atlanta, CA USA - Friday, June 08, 2007 at 19:29:13 (GMT)
Hi,
A little about me:
Due to burns when I was 2, I had both legs amputated below the knee
when I was around 18( I'm 33 now). Because of the burns my stumps are
extra sensitive plus I now have a bone spur. I can't handle anything
hard on bottom of my stumps what's so ever. Due to other medical
reasons I have to live with both of these types of pain.
I found your site while doing research on a few things related to amputees.
1: RTV foam for use as end pads. I was wondering if any of your readers
had any 1st hand knowledge different types of foam. The only one I've
tried in the past was A-2370. I'm not sure but the foam feels harder
now and not sure if they changed how its made.
2: Due to having poorly made prosthetics for over 7 years I'm
looking for some advice on getting my stumps used to pressure points
that haven't had any direct contact for awhile. This is all due to my
last set being made poorly and a local company that I finally gave up
on after 3 years of them trying to make a good fitting leg. I've
finally got a company I really like but a lot of places cant handle
contact.. manly my calf muscles.
3: Due to burns the bottom of my stumps can't handle a lot of weight.
Are there any tricks to help desensitize them. My nerves are over
active. With just having a soft pad contact it is painful. For years
I've haven't had any real contact on the bottoms and always get major
water blisters because of the suction effect. So I'm trying to get used
to contact.
Thanks Garrett
Garrett Fraini <cathryes@Yahoo.com>
Hemet, CA USA - Monday, June 04, 2007 at 21:55:47 (GMT)
Hello again,
I had my leg amputated in January of this year, I'm a LBK but
currently walk with a stiff knee (I have a thigh corset) but spent
years before this in a wheelchair with a useless leg. So, it's great
finally being able to walk again.
I'm in my early 20s and it'll be great to speak to anyone around my age.
I look forward to hearing from you!
Katie <Kattiej85@aol.com>
England - Wednesday, May 16, 2007 at 15:43:38 (GMT)
Stumps R Us - casting call
Hello,
I have recently become involved in a movie being produced in
Cardiff (UK), and not to beat about the bush, we are looking for
amputees in the area who would be willing to play zombies for a few
days.
I understand that for some of you this may be viewed as in poor
taste, however I'm sure some would love the chance to be involved in
this project.
Anyone Interested, email me.
Thank you for your time,
Neil Harper
Neil Harper <neil_j_harper@hotmail.com>
USA - Monday, May 07, 2007 at 22:49:49 (GMT)
Dear Celeste,
Thank you for sharing you ERTL procedure success with us. So many
members of Stumps 'R Us echo your praise of this remarkable surgical
procedure.
Dan
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, May 07, 2007 at 20:26:56 (GMT)
Hi Dan,
My name is Celeste and I found your email online. I was reading
some of your advice about the ERTL procedure and I totally agreed with
it. Dr. Ertl was my surgeon for over thirteen years, but has since left
my HMO. His remarkable procedure gave me back a little bit of what my
life was like before the amputation.
Celeste
Celeste <celeste93@peoplepc.com>
USA - Monday, May 07, 2007 at 20:24:16 (GMT)
Hi folks,
Here I am again.
I really appreciate all the feedback. When you send me a note could you
refer to "Stumps R Us" in your subject line. I won't open email if I
don't know who or where it originates.
I've had some bad days recently.
I guess the concept is just hitting home and I'm having problems
with my temp leg. I don't know why, but something snapped in it and I
can't wear it until I get to the city and see the folks at the clinic.
I suspect I picked up a virus at the hospital because I can't seem to
get going. Anyone else have any problems with taking Lyrica pregabalin
making your arms and legs feel numb?
For me going to the hospital is a three or four hour drive each way and by the time I get home I am a wreck lol.
I think one really has to keep a positive attitude and take it one day at a time?
Cheers to all and thanks again for all the help.
Cheers Don
Don Levesque <Brydongrdns@netscape.ca>
Tara, Ontario Canada - Monday, April 30, 2007 at 20:47:37 (GMT)
Hi Rick,
Although I do not know of one, it is my understanding that the e-vac
system will work well for an AK. Your best bet is to have you CP
contact the company that manufactures the system The name of the
company is Smith Global. Good luck.
Jerry Bach <jjbach@aol.com >
USA - Wednesday, April 25, 2007 at 14:32:40 (GMT)
Rick you could contact
sales@ smithglobal.com
They are the manufaturers of the EVAC
jerry davis <jd97531@sbcglobal.net>
USA - Wednesday, April 25, 2007 at 13:41:43 (GMT)
Jerry & Joe
Unlike you two, I am an AK, due to a work injury 2 1/2 years ago. I
used the liner and pin lock on my first knee, and still use it when I
ride my bike, as I don't worry about it coming off as much. I use a
suction fit MAS style socket on my C-leg I use everyday, and over all I
like it more. Whether that is because the knee is easier to use, the
shape of the socket, or the style of suspension, I do not know.
Do either of you (or anyone) know if the vacuum fit is available
for Aks? I have heard about it, but do not know too much about it. I am
not due for another leg/socket combo for a while, unless my shape
changes.
For everyone else, I want to say thanks for being out there. I read
this website, and another called Above Knee Amputee once or twice a
week each, and even though I don't contribute very often, I like to
"touch base" every so often, and see how/what everyone else is doing.
Just knowing you all are out there is comforting. I don't run (no pun
intended) into other amputees in my daily life, and there are no
support groups locally (SW Washington State), so this is my outlet.
Thanks again,
Rick
Richard Morgan <Richard.Morgan@steelscape.com>
USA - Tuesday, April 24, 2007 at 16:23:04 (GMT)
Jerry:
I am rbk since 2001. I used the Alpha liner pin lock for 5 years and currently using the evac for the past 9 months.
I wouldn't go back to the pin lock system for any reason that I could imagine.
Like you I work long hours, 12, not 24, but long. With the pin lock
I had to stop and readjust the leg every few hours. With the e-vac, I
never stop. I can even take my pants and shoes off without removing my
leg.
The only issue we both have is the sleeve. I am looking for the
answer as well as you. So, whoever comes up with the best answer wins.
I am going to try a new sleeve soon and will let you know the results.
I am also going to try a cover over the sleeve for added protection,
like the covers listed under sleeve art which is a link here .
Hopefully that will help.
Joe
Joe Bach <jjbach@aol.com>
USA - Tuesday, April 24, 2007 at 15:02:53 (GMT)
I
was amputated L B/K in 2003. Ive been in a suction system harmony and
now an evac. I would like to know what other amps prefer.
I am very active, sometimes working as much as 14 to 24 hours a day as a longshoreman.
The suction works very well except for tears in the sealing sleeves
which happen quite often as I work around a lot of metal. Even though I
work long hours I never have to add socks.
Just wondering how other amps like the pin locking system.
Thanks
Jerry Davis <jd97531@sbcglobal.net>
USA - Monday, April 23, 2007 at 21:42:13 (GMT)
Thanks all for the support from Don in Canada
Just a quick note to say thanks for the great support. It really
helps. I get a little nervous out here on my own, but I am sure I will
do fine.
Just a little laugh for you.
I was letting the dog out of the side door of my old farm house and
forgot to put the brake on the wheelchair. I bent over to let the
little guy out and I and the wheelchair went sliding out the door. I
was laughing so hard that I couldn't get back up for a few minutes and
the dog thought I was playing so I had him all over wanting to play tug
of war with my shrinker sock lol.. I thought you'd get a kick out of
that.
Well, it's late for me to be up so I am off to bed..
Take care all and thanks again for all the kind words of support.
Cheers Don
Brydongrdns@netscape.ca
RR 3 Tara, Ont. N0H 2N0
Don <Brydongrdns@netscape.ca>
Tara, Ontario Canada - Sunday, April 22, 2007 at 04:23:35 (GMT)
Hi Don in Canada...
You bring back memories of what I went through 6 years ago.
I came home just like you and went through the same thought process.
I started walking just like you and every day just went a little
further. First to the front yard. Then to the end of the drive, before
I know it, I was at the top of the street. Within a few months I was
waling "the dog" for over an hour and even in the woods. This is after
working a 10 hour shift.
My temporary leg lasted about 8 months before I receive my permanent
leg. I just got my second permanent leg about 6 months ago.
So, hang in there my friend and before you know it you will be walking the dogs like you did before.
BTW: The dog I walk is my son's pitt bull, also on a leash.
Joe
Joe Bach <jjbach@aol.com>
USA - Friday, April 20, 2007 at 14:06:21 (GMT)
Don Levesque in Canada,
It has been my experience that the temporary prosthesis is replaced
with a "permanent" one after 6 to 8 months depending on when the stump
stops shrinking. I say "permanent" because they do wear out or need
maintenance from time to time. Mine last from 3 to 5 years.
I have a hard socket with a RENEGADE foot made by FREEDOM INNOVATIONS.
I love it because it allows me to walk on uneven surfaces and up and
down inclined planes with no discomfort.
Once you are fitted with a prosthesis and have learned to walk with it you will have no problem walking the dogs.
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, April 18, 2007 at 22:35:26 (GMT)
Hi,
I was discharged from hospital Friday the 13th and it is great to be home.
I think it is important that I don't get lazy about my exercises so
I try to walk (albeit assisted with crutches) the length of our lane on
the farm twice a day (about 1000 ft.) I've yet to figure out how I am
going to walk the dogs. I can't let them off their leashes as they
would be off hunting in the woods and I would be lucky if they managed
to return.
Anyone got any hints on that one?
The other question I have is how long does one usually work with the
temporary prosthesis before I get fitted with my permanent leg, or is
that always a work in progress?
I sure felt for Heather Mills when she fell dancing on TV. My heart
really went out to her. I don't usually watch programs like "Dancing
with the Stars", but I wanted to see how she made out.
I have a lot of respect for anyone who tries to overcome what ever challenge one might have..
The snow is almost all gone from this part of our province in Ontario, but it is still a tad chilly.
Cheers to all
Don
Brydongrdns@netscape.ca
RR 3 Tara Ontario N0H 2N0
Don Levesque <Brydongrdns@netscape.ca>
Tara, Ontario Canada - Wednesday, April 18, 2007 at 22:20:53 (GMT)
I
first wrote back in November 2006 about my B/K. Since the time of my
writing I am still totally disabled and bedbound. I was in a felony hit
and run accident on October 23, 2006 and everyone, even my orthos were
amazed at my recovery and release to home on November 19th. I was only
home for four weeks of healing time due to a shattered left leg that
needs bone insertion (part of hip or pelvis), plates and pins. When I
went in on December 19th I expected to wake up with the efixiator off
and a splint on my left leg, but woke up to the efix in a new position.
They found infection in my bone due to the dirt when I ejected and antibiotic therapy was started.
In January infection in my amputated limb was found due to absesses so
more irrigation and antibiotics. I am now still waiting on word from
the second lab to tell Infectious Disease if they are even treating
both with the right medications as they do not even know if it is the
same bacteria they are fighting.
I still keep my faith due to findingthis site and also a book called
"Way of the Peaceful Warrior" see www.danmillman.com tell them Cheryl
from Florida sent you, as his assistant sent me an autographed book,
which is a must read for all about living in today and how we all have
a purpose, but I do find myself more depressed as time goes by.
They keep telling me they should get the results back at anytime and
they cannot take a chance with this as they have one chance to save my
left leg and I do understand, and that alot of samples get sent in
constantly but find myself wondering why it takes so long, and when
will I ever move forward.
As I read through the guest book and see alot talk about infection it
does help me to not feel alone in this fight but was hoping for some
possible feedback from anyone who has been through infection related
setbacks to help me to understand the wait and know the time framing
others have been through. I have been told that I will be able to do
everything I did before and I believe that as I am a fighter but just
need to feel that I am somehow moving somewhere forward in this
process.
I look through the different prosthesis information you sent me but
they cannot fit me until they know there is no infection so even though
I have a prescription for my beginnner prosthesis that is on hold too.
I guess I am just reaching out for some advice and inspiration from
others in my situation. I have alot of support from my devoted husband,
children, and small circle of friends but for them they do not know
from experience how this can be, like everyone here does.
Sorry to be so long winded but I wanted to include all information
related to my situation, and also wondering how advanced of a
prosthesis I can get now that I no longer have health insurance and am
on a share of cost Medicaid plan my share of cost makes no sense to me.
I live in Florida and was told that my beginner prosthesis would become
my swimming/shower one as I asked about a waterproof prosthesis as I
feel since we have an above ground pool ( we rent) it would be good
therapy and also want to be able to sometimes shower without a chair or
possibly even swim in the ocean. Is this possible or do you have to
remove it for sea water?
Once my husband returns to work between that and my disability I may
lose it my Medicaid and also wonder if that occurs would I qualify for
the Barr Foundation as our outgoing bills are so high it will take all
of my disability and most likely any pay he gets to pay our bills but
on the website I only see that it is covered if you have no other means
to pay and they say if I can return to work being on the prosthesis
that many hours a day it may only last 3-5 years per prosthesis.
Also I wonder if I could benefit from the ERTL Reconstruction
procedure? I was a General Manager for a restaurant when this occured
and would like to reurn but it would mean 10 hour days on my
prosthesis, maybe with this only time would tell??
Any information that all of you wonderful members here, and you too Dan
would be SOOOO appreciated!! Once again sorry for asking so much but I
just feel lost and think this is the best place I have seen for correct
answers.
Sincerely,
Cheryl
Any individual emails are welcomed to calliecat420@hotmail.com,
just please state in the topic replying from Stumps R Us as I am very
careful about not opening unknown emails. And thank you again to anyone
who is willing to write to me.
Cheryl
Cheryl <calliecat420@hotmail.com>
FL USA - Monday, April 16, 2007 at 13:32:01 (GMT)
Hi...my name is Katie. I'm 21.
I had an elective amputation 12 weeks ago after suffering from CRPS type 2 (RSD) for 11 and a half years.
I have a below the knee amputation but I have an unstable knee and have a knee corset that keeps my knee straight.
It wont be a permanent thing though.
I no longer have pain and the amputation has been a success.
When I was researching before my amputation there was a lot of negative
news where amputation just made things worse for a CRPS sufferer. As it
has worked for me it would be great to know if there are anymore
positive outcomes.
If you have had an amputation to rid yourself of CRPS (RSD) and it worked for you then please contact me.
Katie
Katie <KattieJ85@aol.com>
Somerset, England - Wednesday, April 11, 2007 at 17:33:14 (GMT)
Hi Dan and Fellow Readers.
I am on a weekend pass from our local Rehab unit at the Grey-Bruce
Regional Health Centre. It is Easter weekend and it has been snowing
for three days.
I was looking for some info on help to get a small ramp made to
help me get my wheelchair in and out of our farm house door and I saw
this thing that said "Stumps are Us" and I couldn't pass that up.
I had my surgery in Hamilton Ontario at St Joe's on Jan. 30th and
was discharged from there after a rehab intro program on Feb. 21st. I
came home to a wheelchair and amp board. After a few falls I finally
had my first appointment for my Temporary Prosthesis and was put into
the rehab program.
I am a week to discharge and I am terrified. I live out in the middle
of no where and I will be alone. Well not alone exactly, I have two
dogs that keep me busy and normally I would have my cold frames started
and I would be thinking about the up coming year with my greenhouse,
but not this year.
This all started nine years ago with a simple surgery to correct an
old subtaylor and cuboid fusion of my left foot. My post op cast was
put on too tightly and when it was removed my foot and leg from the
knee down looked like it was living a different life then the rest of
my body. It looked like it had been burnt.
I was diagnosed with something called RSD or now referred to as CRPS
type 1. I had never heard of such a thing, but I was in an incredible
amount of pain for years. I took copious amount of opiates and finally
the neurologist at the pain management clinic in London Ont suggested
that I take oral methadone.
I asked for a referral to one of the best orthopaedic surgeons in
Canada and he and I came to the conclusion that the best course of
treatment for me at this stage was an amputation.
I knew I had made the right decision a few short hours after surgery.
I can sure tell the difference between surgical pain and the pain from
RSD. I am still taking some pain medication, but not as much as I was.
I have been introduced to Lyrica Pregabalin and it has helped
tremendously. I take Hydromorphone four times a day to deal with a
nerve that has attached itself to something at the left bottom of my
stump. We are working on that with hot/cold treatments and aggressive
massage that helps.
Anyway, I am just over eight weeks post op and I figure I am doing
fine. One day at a time and I don't believe in that old cliché "No
pain, No gain".. If you're having legit pain, do something about it!
Take care everyone and I'll keep you posted..
Cheers from Don in Tara Ontario Canada Brydongrdns@netscape.ca
Don Levesque <Brydongrdns@netscape.ca>
Tara, Ontario Canada - Sunday, April 08, 2007 at 01:02:31 (GMT)
J. Wong-Rolle...
Have your friend make an immediate appointment to see Certified Prosthetist Wayne Koniuk at:
San Francisco Prosthetics
324 Divisadero Street
San Francisco, CA 94117
(415) 861-4146
Wayne Koniuk is Stumps 'R Us certified and recommended Prosthetist
because he specializes in A PERFECT FITTING PROSTHETIC DEVICE. Mr
Koniuk is my Prosthetist as well.
Good luck!
Dan Sorkin <DanSorkin@comcast.net>
San Francisco, CA USA - Monday, April 02, 2007 at 00:00:46 (GMT)
Hi!
I am writing for a friend who had a below the knee amputation. He has
had infections, pain on his stump and from his prosthesis. I tried to
find resources on the web to help him get a new better fitting or
better working prosthesis, but he said he talked to Stumps and the
company I found back east isn't a good company. Can you recommend
something in the Bay area for him? He has Kaiser, and I know they have
a Vallejo facility, but heard it may not be that good. Before the
amputation he was very active, and cannot be now-his prosthesis doesn't
seem able to help him balance enough, plus it causes him pain. He is
the stoic type, and seems to think nothing can be done-but it seems he
is taking way too many pain killers, and his weight is up because he
cannot be active. He used to hike and backpack and now cannot even walk
easily.
I don't know what reasonable expectations are for his situation, but am
worried that he is jeopardizing his health because he thinks nothing
can be done. Can he get someone to help him get a better prosthesis? I
heard his cost about $1500 about 2 years ago-which seems very
rudimentary from what I have seen out there.
He has a doctor is SF, but hasn't seen him in a long time, probably since the initial surgery. Thanks
J. Wong-Rolle <wongrolle@hotmail.com>
Vallejo, CA USA - Sunday, April 01, 2007 at 23:58:06 (GMT)
ssnnlee@netzero.net...
Stumps 'R Us Certified Prosthetist Wayne Koniuk suggests that it sounds
like a medical, surgical problem and he (or she) should return to his
(or her) surgeon for an assessment.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, March 22, 2007 at 10:41:03 (GMT)
Michael Hawkins,
Being an amputee, I can say one of the best things to help was letting
me do things on my own. Yes, it is nice to have people do things for
you, but as someone who was always looking for ways to help others, it
was sometime frustrating for others to step in before I was even able
to try.
Offer to ride along to appointments, but if he is able to drive, let him do it if he wants to.
My wife always insisted I take someone to each of my appointments
which were about 45 miles away, but sometimes I just wanted to be
alone.
Look up resources, such as Amputee Coalition of America, and let him know where to find help for other issues if he needs it.
Rick
Richard Morgan <Richard.Morgan@steelscape.com>
USA - Wednesday, March 21, 2007 at 17:31:15 (GMT)
My
son, Michael 26 years old, became a BK amputee yesterday. The doctors
are helpful but what can he expect in the next few months, years?
What can we, as his parents do to help without getting in the way of his recovery/rehab?
What questions should we be asking?
We (Michael, family and friends) are all still coming to grips with
what has happened and we're glad he's still alive. Any information will
be very helpful.
Michael Hawkins <jejoge05@comcast.net>
Tucson, AZ USA - Wednesday, March 21, 2007 at 01:32:47 (GMT)
Carmen Lopez in Atlanta, GA...
Stumps 'R Us Certified Prosthetist Wayne Koniuk suggests a smaller liner size or an antiperspirant or BOTH.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, March 20, 2007 at 05:56:11 (GMT)
I
wear my prosthesis about 16 hours per day 7 days a week. I wanted to
know is it normal to get air in your liners after wearing your
prosthesis for long periods of time?
I seem to be getting air in my liners after just a couple of hours and
find that I have to take it off and clean the liner and my stump and
then that works for a couple of more hours. But, then here comes the
air again.
Is this normal?
How often to you need to replace your liners?
Any information given will be gladly appreciated.
Carmen Lopez <carmenvitalopez@earthlink.net>
USA - Monday, March 19, 2007 at 13:08:48 (GMT)
ssnnlee@netzero.net in Solano County...
You're in luck. DRIVING SPECIALTIES LIMITED who specialize in hand controls for amputees is located at:
215 Commercial Street
Vallejo, CA 94589
(707) 553-1515
Come see us. We have missed you at the Bowling parties. The next one is in July at the Serra Bowl in Daly City, CA.
The next Stumps 'R Us lunch is Saturday March 24th...11:30 AM at
Spenger's Fish Grotto..Schmick Room in Berkeley. Details on page ONE of
this web site.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, March 14, 2007 at 01:09:02 (GMT)
Hey Dan,
I hope you remember me. I attended one of your bowling get-together. At
that time, I lost my right leg. I am now a bilateral amuputee. I live
in Solano County.
I hope you can provide me with someone who can convert my car to hand controls.
ssnnlee@netzero.net <ssnnlee@netzero.net>
Solano County, CA USA - Wednesday, March 14, 2007 at 01:01:43 (GMT)
Stumps
'R Us Certified Prosthetist Wayne Koniuk Wins The American Academy Of
Orthotics & Prosthetics Annual Award For CLINICAL CREATIVITY!
The Clinical Creativity Award will be given to Wayne A. Koniuk, CP.
For the past 25 years he has operated the San Francisco
Prosthetic-Orthotic Service. He provides amputees highly functional
prostheses and has successfully rehabilitated many athletes and
competitors.
Presentation of the Clinical Creativity, Research, Honorary
Membership, and Clinical Commitment Awards will take place at the
Annual Business Meeting, Friday, March 23 at 7:00 am in Golden Gate C.
The Academy’s 2007 Annual Meeting is being held March 21-24 at the
San Francisco Marriott. For complete program details and to register
online, please visit the Academy’s Annual Meeting website at
www.academyannualmeeting.org.
To Register:
Call the Academy (703) 836-0788 and we’ll register you over the phone.
Fax your Registration Form to (401) 765-6677.
Register online at www.academyannualmeeting.org.
The Academy Annual Meeting –
An Exceptional Education Experience
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, March 09, 2007 at 14:55:22 (GMT)
I
live one day at a time and very much try to make each day count as much
as possible. I have been an amputee since 9-6-02. I have been thru many
injuries that resulted from the original accident that caused my
amputation.
At first I was all up, it's ok I am still alive, it was only my foot
not my life. My prosthetists, Mark Maguire(Advanced Prosthetics, Omaha,
NE.) has been nothing but a tower of strength for me thru my ordeals.
He has come to my home, on Saturday, and brought me a new foot and put
it on because he was so excited for me to get a foot that had more
response. He met me at the hospital when I broke my hip in 5 places, to
remove my prosthetic, so my hip would have the least amount of pain. He
sent Jeff, a very knowledgeable young prosthetist, with me to Ohio to
be there in the surgery room, in Ohio, when I had the ERTL procedure.
I can't praise him and his crew enough.
My point to all this? Life is not fair some times. Being an amputee is
NOT easy. My body is not like any other amputee in the world. I will
never be able to do the things I used to do. I will not be able to work
the rest of my life.
Point being, have a positive attitude because sometimes that may be all
you have to fall back on. Expect the best but be ready to readjust and
except your life the way it has to be.
I was told I expected to much, that's why I would get knocked down
every time I would find out I was not going to get any better than
this. Love your life every day, make it the best you can have. Don't
lose your sense of humor and love for life because of some set backs
you never saw coming.
I hope every amputee can get back to their lives and do everything they
did before. But those who can't, adjust to your new life and enjoy it.
That's all folks!!!!!!!!!! lol lol
Debbie Coonrod <debc328@msn.com>
Council Bluffs, IA USA - Thursday, March 08, 2007 at 16:50:11 (GMT)
Hi there,
I am looking to see if there are any amputees in the Yuba City, CA
area? My brother -in- law just lost his leg (about 6 months ago) from
below the knee down and I was hoping to find someone that he has
something in common with. He doesn't really know anyone in the area.
His name is Chris and he's 22 yrs old. He likes fishing and outdoors
stuff, and he needs a woman friend in his life too.
If you know of anyone let me know! Thanks!
ps. i heard of you from someone on the amputee treatment website..a guy said you might be able to help
Ellie
Ellen Millhouse <elliekatem@gmail.com>
Yuba City, CA USA - Wednesday, March 07, 2007 at 14:27:55 (GMT)
Tony
Barr was one of the most generous, genuinely dedicated, humorous souls
I had ever met. It is with sadness and disbelief that I read his
obituary today.
Tony Barr was instrumental in changing so many lives including my own
positively. His unwavering advocacy for the ERTL Surgical Procedure
helped make so many amputee futures bright and for all practical
purposes painless.
Tony was both networking collegue and information source. His "A
Survivors Guide For The Recent Amputee" was and is the candle that
cursed the darkness for so many.
Tony Barr was one of the few that will be missed by so many.
Sleep peacefully dear friend. You earned the rest.
Tony's Obituary follows
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, March 07, 2007 at 03:48:11 (GMT)
The Amputee Community and Stumps 'R Us lost a great friend today
ANTHONY TALBOT BARR Anthony Talbot Barr, 59, of Boca Raton died peacefully on March 5, 2007.
He was born July 18, 1947, in Chicago, IL. Tony was predeceased by
his father, William G. Barr of Joliet, IL; mother, Elinor Talbot
Harnett of Ft. Lauderdale; and most recently by his sister, Robin Barr
Pellegrino of Boulder City, NV. Surviving Tony are his daughter Lisa
(Tim) Russo; granddaughter, Tabitha, grandson, Nick; and great
grandson, Timothy all of Troy, NY. He is also survived by his sister,
Kathleen (Dave) Barr Kruger, of Lilburn, GA; brother, Michael (Carroll)
of Powhatan, VA; and sister, Susan (Jeff) Hellberg of Amarillo, TX.
Also surviving Tony are the love of his life and soulmate, Eva Julie
Hughes, and his "other mother", Dolores Schneider.
Tony graduated from the University of Tampa with a bachelor of science
in 1970 and subsequently started T-Barr, Inc. a commercial real estate
company. He was a member of the National Association of Realtors and a
longstanding member of the US Polo Association. In addition to his
involvement in real estate, Tony's dedication was to The Barr
Foundation as both a Board Member and its President, traveling to Third
World countries to make people "Whole Again" through The Barr
Foundation.
He was a member of the elite group of skydivers who had logged over
five hundred jumps, but his passion was polo and his polo ponies.
Friends may call from 2-4 and 6-8 pm on Wednesday, March 7 at Babione
Funeral Home (East Chapel), where a funeral service will be held at
7:00 pm.
The family requests that in lieu of flowers, donations be made to The Barr Foundation, 136 NE Olive Way, Boca Raton, FL 33432.
The family and Board of Directors of The Barr Foundation are resolute
to continue the work of the Foundation in memory of its founder,
William G. Barr, and now its Champion Tony Barr.
Babione Funeral Home is in charge of arrangements, 561-395-8787
To express condolences and/or make donations Visit PalmBeachPost.com/obituaries
Published in The Palm Beach Post on 3/6/2007.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, March 07, 2007 at 03:42:38 (GMT)
Liz Heywood in Spencer, NY...
Once you make the decision it gets better every day.
Congratulations and welcome back to the world of the living. You will
never regret what logic & good sense told you what was the right
thing to do.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, March 05, 2007 at 22:06:23 (GMT)
Hi Dan & all--
Thought I'd send an update on my situation.
Last Monday, Feb. 26, I became a brand-new AK amp. This was the
culmination of my year of research, appointments and arguments with
doctors who advised me to fuse my leg straight, and support and advice
from wonderful amputees who contacted me after I posted questions here
last November.
I had the surgery Monday, came home on Thursday & I'm doing fine.
It feels like I've finally crashed through a wall into a new stage of
my life after deterioration from 30 years of walking with the
fused/ankylosed knee I developed as a teenager after untreated
osteomyelitis.
The friends & contacts I've found here at Stumps have made all
the difference. Electing for amputation seemed like a unique trip until
I realized how many have already done it and turned their lives around.
I'm still a work in progress but the absence of my leg feels like a
space where my new mobility is about to appear. It's exciting!
Liz Heywood
Spencer NY USA
Liz Heywood <lheywood@localnet.com>
Spencer, NY USA - Monday, March 05, 2007 at 22:00:24 (GMT)
Recently,
your website was brought to my attention by Burke Thompson of Oregon. I
am wondering if you or any of your readers can help me?
I have read from your guest book and noticed that many of your guests
are from the west coast, but thought I'd put a request out anyway.
I am 49 years old and in good health, have been an above-the-knee
amputee for 16 years; my weight is appropriate for my height and build,
and does not fluctuate. I have a long residual limb, and good
insurance, and the motivation and tenacity to get a leg (i.e., I have a
lot going for me!) Two years ago I had an ERTL procedure with good
results. Since then, I have gone through two prosthetists both of whom
I worked with for approximately one year. I am in Maine and both of
these prosthetists are in New York. I decided to travel there because
of the larger population of people/amputees/prosthetists with
experience fitting above-the-knee amputees.
In these clinics I have met some people that have been fit well, others
that haven't been; unfortunately, I fall into the latter category.
I have devoted at least every other week to traveling to New York
to make myself available for fittings, etc. The second prosthetist got
me up and walking and billed my insurance. With the increased walking,
I gained muscle in my upper thigh and at that point needed more
adjustments, had them done, but from that point the leg started
hurting. At each fitting the leg fit became progressively worse than
the last and deteriorated to the point that I am no longer wearing the
leg because it hurts too much to wear. (Shock pains to the residual
limb which I hadn't experienced since before my ERTL procedure.
I decided that I cannot tolerate this type of torture.) I am worn out
from the travel (a six- to seven-hour drive each way), and my
prosthetist has lost interest and time as he only works two to three
days per week.
What I am looking for in a new prosthetist is:
1.) One who is located within a two-hour drive of Portland, Maine: Could be Boston, New Hampshire, etc.
2.) Qualities: Passionate about what he/she is doing Compassionate. Has
fit many above-the-knee amputees and able to maintain the fit.
3.) Personality: Must be Kind, Respectful, Good listener, Good comprehension
Any help/tips/recommendations that anyone can give me would be greatly appreciated!!
Sincerely,
Meg Wolff
Author of Becoming Whole, The Story of My Complete Recovery from Breast Cancer
www.megwolff.com
www.macrobreastcancersurvivors.com
Meg Wolff <megwolff7@aol.com>
ME USA - Friday, February 23, 2007 at 15:02:08 (GMT)
Dear Holly
Contact Tony Barr at the Barr Foundation in Boca Raon, Florida t-barr@t-barr.com He may be able to help.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, February 21, 2007 at 19:40:54 (GMT)
I
just found your website and I am grasping at straws here. I have a 22
year old stepson who served in Iraq during the "first wave". When he
returned he and his buddies all bought dirt bikes. He had an accident
on the dirt bike while still in the military three years ago.
He had his foot rebuilt at a military facility.
About a month ago, an infection ran through the foot and there was no choice but to amputate it below the knee.
Unfortunately, he was a mechanic intern at a dealership and his insurance does not kick in until March 1, 2007.
The military "lost" his paperwork and due to some other issues they may
not consider themselves financially responsible. He does have a
military attorney, but it could be years before he knows anything about
his "case".
He now has 30,000 dollars in medical bills in Idaho Falls. We are
following up with the hospital's aid reccomendations but those are not
looking good as well. In 6 months he is going to need a lot of cash for
his prosthetic leg.
I guess I am wondering if there is an agency anywhere that provides any
type of aid for individuals who need help purchasing a prosthetic?
I appreciate your time and efforts so much. Your website is very
informative. I myself wrecked my Harley five years ago, luckily I was
not injured. I consider myself very lucky.
Thanks so much. God bless you for helping others
Holly
Holly Gederos <hgederos@mt.gov>
USA - Wednesday, February 21, 2007 at 19:38:26 (GMT)
Jeanne Morris...
He may be nice. He may be an amputee BUT your Certified Prosthetist sounds like an incompetant moron.
Find another CERTIFIED PROSTHETIST in your area and have him (or her) fit your socket properly.
There is no reason why after this much time you are not walking properly and WITHOUT PAIN!
In what city in the USA are you? Perhaps I can suggest a proper vendor.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, February 19, 2007 at 05:22:50 (GMT)
I'm
Jeanne morris and I can't figure out why my prosthetist can't make my
leg comfortable to walk in? He is an amputee. I trust him. But the end
of my stump is so sensitive and I get such pain walking.
I'm only 47. I want to be active. Anybody have any Ideas?
This is my third leg.
Thanks
Jeanne
Jeanne Morris <jamiejeanne@sbcglobal.net>
USA - Monday, February 19, 2007 at 05:16:33 (GMT)
I haven't posted for a while but have some [personal] good news to share.
I have suffered with constant pain, occassionally chronic, since a road
traffic accident in 1981 left me with a paralysed arm [brachial plexus
lesion] and elected LAE amputation in 1991.
In the intervening 25 years I have attended various pain clinics and
tried various pain treatments from TNS device to copious amounts of
whisky. I attended a pain clinic in November 2006 and was seen by a Mr
Thorpe, Anaesthetist and Pain Management Consultant who prescribed a
mixture of Amatryptil [mild antidepressant] and Pregabalin [neuopathic
pain suppresant].
I've been using it ever since...
The occassional shooting pains still occur though less frequently but
the constant background pain and frequent thumps are on the wane - it's
amazing! I used to suffer very badly during the night - every time I
turned over it would cause a massive bout of unbearable pain - not any
more, and the drugs have a side effect of helping me sleep
significantly better than I have in the past 25 years.
The Anaesthetist told me that only 2% of people who suffer constant
pain following "neurological trauma" will suffer with it for as long as
I have.... I guess that makes me special :O)
If anybody wants to know the doses please contact me and I'll be happy to share them.
Regards, Barry
Barry Procter
Henfield, Brighton, UK
email: barry.procter@uk.ibm.com
Barry Procter <barry.procter@uk.ibm.com>
Henfield, Brighton United Kingdom - Thursday, February 15, 2007 at 21:13:47 (GMT)
Ron,
I have had a walking boot since day one of the infection. It did not
help at all until I could walk without it. Now, I can walk in the boot
with less pain, but it still hurts pretty bad. When I first get up from
sitting for awhile it really hurts (almost fall down from pain) with or
without the boot. It hurts due to weight bearing and motion.
As far as fusion goes.... 1. If it takes away the pain seems like a
big if. 2. If the infection does not come back seems like a big if
(from the original accident the bone is not smooth and straight, but
has lots of irregulairities and hidey-holes for infection). 3. If it
can be useable again is iffy (I have pretty high standards and
expectations for usefulness--above all I want something that works
reliably without limitations). 4. If this thing is going to plague from
here on to heaven and is going to result in bka anyway, then I would
rather just get on with life.
Another question? Since I have already been laid up for 4 months
with this thing and now working in extreme pain, what can I expect for
healing time with bka and Ertl?
I am healthy, in shape, not overweight and have a "git 'er done"
attitude. Is it possible to walk out of the hospital after surgery?
My understanding is that I will be fitted with a prosthetic while I am still under anesthesia.
By the way, this won't be the first time I have given up a body part
for life, libery, and the pursuit of happiness. Four and a half years
ago I had a colonectomy with "J" pouch performed due to Chronic
Ulcerative Colitis, and I couldn't be happier with the result.
The info and advice has been invaluable. Thanks,
Jim in NV
Jim Stockman <jimestockman@yahoo.com>
USA - Friday, February 09, 2007 at 11:40:37 (GMT)
Jim (in NV)
Like Dan, I have had the Ertl Procedure and have been quite happy
with it. However, each person must make the decision themself, with
proper information leading up to the decision.
(You can read my story on the ErtlReconstruction.com website if you like)
My ankle man told me that when I was in my cam-walker (walking boot),
if I still had the pain, a fusion most likely wouldn't help. The fusion
is to 'lock the ankle in place". The cam-walker is designed to do the
same thing. So, if in the boot I had tons of pain, he didn't see that
fusion would really help me.
(of course, this was told to me after a fusion surgery, and we were
discussing another fusion, since I was 'breaking down' the current
fusion.
Have you completely immobilized your ankle and seen if that
removes/reduces the pain? If not, take a few days/weeks to test that
out. At least you will have the knowledge you tried and found out the
the fusion really isn't an option.
This is coming from the webmaster of ErtlRecosntruction.com. While I am
obviously a HUGE advocate of the procedure, all options should be
investigated before taking that final step (no pun intended)
Ron King
Ron King <ron.king@gmail.com>
USA - Thursday, February 08, 2007 at 16:16:45 (GMT)
Jim in Elko, Nevada...
In my opinion you should have a below the knee amputation using the
ERTL Surgical Procedure. The ERTL Procedure is described with a link to
the ERTL website on page one of the Stumps 'R Us web site
www.stumps.org I recommend the ERTL because it is the only one I know
of that creates a bone bridge at the stump end for strength and buries
the nerves in soft tissue that eliminates or greatly reduces any post
op pain.
Good luck!
It was more than 30 years ago that I had the same decision to make. I never regretted it...NEVER.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, February 07, 2007 at 04:57:06 (GMT)
Dan and others,
My name is Jim Stockman and live in Elko, NV. I fell of a 38' cliff
on 7/1/97 and shattered my lower leg/ankle. It is was nearly amputated
then but they were able to reconstruct it over the course of three
surgeries.
I had constant, though dull, pain and nearly debilitating pain off and
on until 10/04 when I had half the hardware removed (the other half was
buried under bone).
What a difference! No pain to speak of since then until a root canal
w/out antibiotics and developed a staph infection 10/06. Surgery to
clear up the infection and remove rest of hardware, but now have SEVERE
pain when walking and aching at rest. I was off work for 3 and a half
months because I couldn't walk (work as a heavy equipment mechanic) and
now back at work but can barely walk.
Specialist says ankle fusion or bka is the answer, but recommends
fusion. First accident I had compartment syndrome resulting in nerve
damage, circulatory damage, and skin graft. My foot is not perfect, but
maybe good. Toes do not work well.
My question: What (in your opinion) will give me back my quality of
life, activity level, and as pain free as possible? I ride dirt bikes,
play sports, and chase my young kids and lovely wife, as well as have
an active, on feet all day job. What would you choose? I have always
leaned toward bka ever since the accident because I was so limited with
my messed up leg. I am very interested to get your point of view
(people without problems seem to think keeping the leg at all cost is
the best).
Thanks for your site and the info available.
Jim in NV
Jim Stockman <jimestockman@yahoo.com>
Elko, NV USA - Wednesday, February 07, 2007 at 04:54:46 (GMT)
Hi,
I would just like to pass on a link to a wonderful Austalian
company making stump socks that are orderable over the net and shipped
worldwide
I know many amputees find it hard to find a source of quality socks at reasonable prices.
Love your site, keep up the excellent work and know we all appreciate it.
http://www.hellersocks.com/index.html
Barry Porter,
Bathurst, NSW,
Australia.
pondo666@internode.on.net
Barry Porter <pondo666@internode.on.net >
Bathurst, NSW, Australia - Friday, February 02, 2007 at 16:48:39 (GMT)
I saw my doctor today and she seems to think it was (the bump burst the other day like a big pimple) a Baker's Cyst .
Nothing to worry much about.
I may have torn some cartilage or something during my accident that was not diagnosed.
Robert Webster <Robert.J.Webster@navy.mil>
USA - Wednesday, January 31, 2007 at 20:52:34 (GMT)
Rob Webster...
Possibly pimple, ingrown hair or onset of blister check the liner you are using .....
Does the crease in the liner at the backside of the knee where it
bends match up to the bump on the skin????? If so you might want to
take steps in keeping it cleaner exfoliated and a bit dryer i.e. less
sweat and possibly out of the leg for a few days.
Have a good one. Ride safe
"Two Tires Downside"
Joe Kennedy
RBKA (Rider)
FL USA - Monday, January 29, 2007 at 16:30:54 (GMT)
Your question was a new one for me. I don't have an answer.
I would suggest you ask your Certified Prosthetist if the socket fit
might have something to do with the above socket swelling. Other than
that your Doctor should have an idea and hopefully a solution.
Thank you for responding positively to others in our GUESTBOOK.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, January 26, 2007 at 14:04:58 (GMT)
I
am a 36 year old L/BK due to a motorcycle accident 18 months ago. Doing
well overall and am even back on the motorcycle after we (the bike and
I) got fixed.
It actually took the bike a while longer to get fixed/modified.
Anyway, my question is this;
I like my socket and Renegade foot however I have felt a bump forming
behind my left knee a little above the socket. I can only really feel
it when my leg is straight. It doesn’t hurt but it can be uncomfortable
at times. It is larger now than it was a few months ago.
I am going to be seeing my doctor next week and was wondering if you had any ideas about it?
Thanks for the great web-site by the way. I have contacted many people on it and hope to help others as well.
Riding on,
Rob
HDRider
Rob Webster <robwebster@comcast.net>
USA - Friday, January 26, 2007 at 13:56:38 (GMT)
Hi,
I need to call someone who can convert the braking system on my motorhome.
I do not want hand brakes. I am looking for someone who can realign the brake to the left side of the steering column.
Do you know anyone who can do that?
Thanks for your help.
Frank Billeci <fuzyfrank@aol.com>
USA - Tuesday, January 16, 2007 at 02:22:16 (GMT)
Roberto Donati in Los Angeles, CA...
The best place to inquire would be through the
ACA (the Amputee Coalition of America). You can scan their Web site at:
http://www.amputee-coalition.org
Or E-mail them directly at:
editor@amputee-coalition.org
Or call them TOLL FREE at:
(888) 267-5669
The ACA has the largest data base of Amputee Support Groups in the USA that I know of.
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, January 16, 2007 at 00:42:23 (GMT)
Dear Mr. Sorkin,
I found your website thru Google.
I am a marraige and family therapist in Los Angeles and have a few
patients that have lost fingers, hands, arms etc. I am having a
difficult time finding a support group for them in the LA area. I was
wondering if you knew of a website or links or phone numbers I could
call, that would guide me and my clients in the right direction.
Thank you so much.
Roberto Donati M.A. MFT <robertodonati@gmail.com>
Los Angeles, CA USA - Tuesday, January 16, 2007 at 00:36:48 (GMT)
Hi!
My name is Fran and I am a 44 year old bilateral bk amputee(second
amputation just happened this past December) and a single mom of a
beautiful five year old daughter named Sadie. We live in Lynnwood,
Washington in the basement apartment of my sister and brother-in law's
house. When I lost my first leg, the recovery time for me was a snap! I
was back at work 2 weeks after my surgery and walking upright in 5
weeks.
I don't remember being depressed or sad or frustrated back then. This
time around feels very different to me, maybe it's because I have now
lost both my legs, and you know; once they are gone, they are really
and truly gone. I am depressed and sad and very frustrated but mostly
scared. It's the waiting that is making me crazy, waiting for my limb
to heal so I can start the process for a new prosthesis, the hours seem
like days, and the days seem like weeks. Being stuck in this wheelchair
doesn't help much either; can't drive yet, can't pull up my pants after
using the bathroom without transferring from my chair to my bed to do
it. I know all of this is transient but the waiting is crazy making.
And then, Sanjay(my prosthetist) calls me to tell me this:
My insurance company (AETNA) has decided in all of their infinite
wisdom to deny my evac pump system on my right leg because they deem it
experimental/investigational. The frustration for me is immense because
they covered my first vacuum pump prosthesis back in 2005 so why now
are they saying the pump system is experimental, and to top it off,
MEDICARE does cover the vacuum pump systems, the particular device I
have(EVAC) has it's very own code with Medicare and they do consider it
a covered device. It is beyond me why insurance companies play god. I
mean the letter they sent my prosthetist was ridiculous: "This is your
final appeal, do not write to us again regarding this, blah, blah,
blah!!!!!" I despise insurance companies, and right now I am paying a
fortune for my COBRA premium and realize that it is costing me and the
agency I work for a fortune for health insurance and each year they cut
more and more and decrease benefits but raise the premiums, AGHHH!!!!
Technically my prosthetist cannot hold me responsible given their
contract, etc but now they are out over 5 grand and now with this
second amputation I am need of yet another prosthesis and the vacuum
pump has been the best set up for me. It has allowed me to raise my
daughter, continue living the life I was accustomed to prior to
amputation, etc and I am at a loss as to what to do from this point
on...
So; I ran across this site while searching for help online and thought this might be a good place to begin...
I am wondering if there are other folks who have had similar
problems with their insurance companies and if so would you be willing
to share your experiences with me and maybe impart some of your wisdom
in my direction. It's wrong of AETNA to do this, and they need to be
stopped somehow!!!!
Thanks so much for listening. It has been a rough couple of months
and now with this news, it only adds to my depression and anxiety.
Peace Always,
Fran Olla-McCabe
19430 70th Place W.
Lynnwood, Washington USA
F.OllaMcCabe@hotmail.com
fran olla-mccabe <f.ollamccabe@hotmail.com>
Lynnwood, WA USA - Monday, January 15, 2007 at 08:53:13 (GMT)
Nikki Thompson in Snohomish, WA...
The first place I would try to borrow used or new prosthetic
devices would be from your local Certified Prosthetist (check the
yellow pages for Prosthetic devices OR Certified Prosthetist).
Next I would contact the Otto Bock Company (www.ottobock.com) and state your case.
You have a WONDERFUL idea for an 8 minute descriptive presentation.
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, January 12, 2007 at 03:33:55 (GMT)
I
am a student at Snohomish High School. I am preparing to compete at the
Washington District and State Debate Finals giving an expository
speech.
Expository is a competitive speech event in which students give an eight minute explanation of a topic they feel is important.
I am giving my speech on the history and future of prosthetics and am
in need of some visual aids. The Stumps 'R Us site intrigued me and I
think you may be just the person who might know where I could find some
prosthetic devices to enhance my speech.
They could be old or broken as long as they are representative of function they are supposed to perform.
I would really appreciate your help in finding these treasures.
Thank you!
Nikki Thompson <u-r-enchanted@comcast.net>
Snohomish, WA USA - Friday, January 12, 2007 at 03:27:21 (GMT)
Next
week on January 18th, I will truly CELEBRATE the six month milestone of
my Ertl Recon surgery. (I had the surgery at the Oklahoma University
Medical Center with Dr. William Ertl.)
I will try to update what has happened at a later time, and give
you a synopsis that may be on the Ertl website/patient testimonial.
I did finally get into a definitive prosthesis on Dec 11th (I went
through two check sockets--from Sept 21 to Dec 11th) and have had some
challenges with pain, but the last week, things have been improving. I
did go back to work on Sept 12 full time while still on crutches, and
have been working full time since then.
I'm not "jumping off jeeps" yet (from the Navy SEALS video), but
can stand on my prosthesis--full weight bearing with little pain. I
truly believe I am where I "need to be" at this time!
Thanks for everything you have done to promote the Ertl procedure.
Dave Paschold
402-423-0308 office
402-239-6947 cellular
dlpaschold@agriliance.com
Paschold, Dave <dlpaschold@agriliance.com>
USA - Thursday, January 11, 2007 at 14:30:02 (GMT)
It has been a long time since I have visited the site, but, I am back.
I recently had a new socket made and after 6 years of the pin locking system I was talked into trying the Tech Harmony system.
Well, I tried the tech model, and one from genesis, then my leg guy
mentioned there was a model out that ran by battery that really kept
the leg on even when sitting for long periods of time. Whenever the
vacuum gets low, the pump sucks the air out.
So far I am a happy camper.
It has been around 4 months and I am still happy. Actually kind of even
jogged a bit, something I could not do before. I usually go from 5:30
AM to 6:30 PM daily at work and do not take my leg off to adjust at
until I get home from work.
I no longer never have to stop, and readjust because the leg has
slipped during the day from all the walking I do. That is great
considering I am plant manager who walks the production floor all day.
I used to have to stop at least once every 3 hrs...now, nothing.
Also so far no big deal in heat either as I was in Vegas and Florida
within the past 4 weeks. I can go on and on, but won't. Need to get to
work.
If anyone has any questions, ask away, either private (joebach3@hotmail.com) or on this forum.
JJ Bach <jjbach@aol.com >
USA - Wednesday, January 10, 2007 at 17:22:05 (GMT)
Hello,
My name is Tina Wolfgram. My Dad Timothy Canfield just recentely got
his left arm amputated and is having severe phqntom pain. He has no
desire to eat and is losing a lot of weight.
Is there someone out there that my dad can talk to that has gone
thru the phantom pain and can give him some helpful things he can do to
releve all the pain my dad is in 24-7
Thank you to all who may reply with much needed help.
tina wolfgram <tchump333@peoplepc.com >
USA - Monday, January 08, 2007 at 20:53:15 (GMT)
Kevin O'Reilly...
I'm not sure what kind of prosthetic you have but but if you are
ripping thru pants I would assume you either have the lock and pin
system or the knee strap.
One suggestion is this. I have a suspension type prosthesis and use the
Otto Boch sleeves. In these sleeves they send what is called a gaiter
which is suposed to prolong the use and wear and tear of the sleeve by
covering it with a band. I don't use them as they are a pain in the ass
to use but if you could somehow cut an old stump sock or an old sleeve
or even your wife's old nylon to go over the area that's rubbing it
should prolong the pant wear and tear and rubbing in that area.
Suit pants are especially prone for damage.
I hope this helps.
Lutz, FL USA - Sunday, January 07, 2007 at 14:32:40 (GMT)
Randy,
Contact Tony Barr of the Barr Foundation in Boca Raton, FL. He
& I would both recommend the ERTL Procedure for you because it is
the ONLY surgical procedure that properly prepares the residual limb
for a comfortable, mostly pain free prosthetic device.
Tony's amputation is exactly what yours will be.
Tony's Email address is t-barr@t-barr.com
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, January 03, 2007 at 19:15:46 (GMT)
My doctor just told me I should consider a reconstructive amputation of my ankle/lower leg.
Shocking news. I would like to gather all info, so I wanted to talk to
someone who has gone before me! Do you have a refferal I might talk to?
Thank you.
Randy Ziraldo <rziraldo@yahoo.com>
USA - Wednesday, January 03, 2007 at 19:12:10 (GMT)
I need some help from the Stumps 'R Us.
A brief intro. My name is Sal Becker and I am 50 yr old bilateral ak of 3 yrs. (Damn almost sounds like I am in AA).
Due to fighting MRSA for a year and half I am just now getting to
the prosthetics. Just got into basic knees, up to about 200 feet at a
shot without assuming the confessional position.
The help I need is that I want the computerized knees.
Yes 2, one for each leg.
Of course the Insurance company denied them as being
investigational and experimental. As far as a bilateral AK using them,
unfortunately there is little to dispute this.
So our plan of attack is to prove that bc/bs has paid for the knee in
the past either uni or bilateral. With enough examples there, with
there being a L number under Medicare (medicare doesn't pay for or
assign codes to experimental or investigational equipment) and with
what is being done at Walter Reed Hospital using the c-leg for both
unilateral and bilateral amps, we think we can beat the denial.
So anyone who has had bc/bs (blue cross/blue shield) pay for their
computerized knee, if you could please contact me and allow us to use
you as an example, it would be really great. If you had Empire bc/bs
pay it would even be better.
At the end of the run, successful or not, all information obtained will
be posted to a website for public use and hopefully make it easier for
the next person.
Thank you.
God Bless and Happy New Year to all.
Sal Becker <salbecker@cox.net>
Phoenix, AZ USA - Tuesday, January 02, 2007 at 19:45:57 (GMT)
My daughter would like to circulate her newsletter for Young Amputees and your Stumps 'R Us readers.
If you would like to receive “Young Amputees in Action” (it is a PDF file in color)Email me at:
jmjotters6@yahoo.com
You can write or call at:
2437 Baker Rd.
Modesto, CA 95358
(209) 572-5136
Thank you!
Mary-Lynn Ott <jmjfarmgirl@clearwire.net>
Modesto, CA USA - Tuesday, January 02, 2007 at 01:11:48 (GMT)
Kevin...wherever you are,
To avoid the worn pants problem I wear sweats most of the time. The
only time I wear conventional trousers would be to attend a formal
occasion.
In the spring and summer I wear shorts.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, December 19, 2006 at 14:35:05 (GMT)
I
am a BK and have a question. I am tired of replacing pants because the
edge of the prosthesis is rubbing against the knee of pants causing
holes in the knee portion of pants. Does anyone have any info on how to
correct this?
Love your site...keep up the good work!
Kevin O'Reilly <kevino@iglou.com>
USA - Tuesday, December 19, 2006 at 14:28:01 (GMT)
Lisa White in Perth, Australia
Don Scheiman in Sunnyvale, CA USA can solve your exercise problem...easily. Contact him at:
dscheima@sbcglobal.net
Don works with upper arm amputees and bi-lateral amputees with extraordinary success.
What he will do is to coach you through his exercise methods using easily affordable devices you can use at home.
I just got off the phone with Don explaining your problem so he is expecting your Email.
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, December 17, 2006 at 20:01:42 (GMT)
Hi,
I am a 31 year old bilateral above knee amputee, for the last 7
years. I am absolutely lazy when it comes to exercise, and have a
sit-down full time job.
I have gained nearly 8kg in weight since losing my legs, and I haven't
even attempted pregnancy yet!!
Walking was my favourite exercise and I really miss it.
I am seeking advice from other non-exercise amputees as to what
physical activity ideas helped for them. I found any exercise with my
legs on to be unreliable, as I have very problematic stumps and tend to
rely on them to get me through the working day - so my spare time is in
the wheelchair.
Swimming seems to work, but finding the time doesn't. Some say
swimming before work, not after...but I find my stumps are too fragile
(skin grafts) to handle my legs being put straight on afterwards.
Help!
Smugly married and getting plumper by the year....
Lisa E. White <lisaw129@yahoo.com.au>
Perth, Auistralia - Sunday, December 17, 2006 at 15:39:07 (GMT)
My name is Stephen Reynolds and I just came across the Stumps' website.
I'm a new LBK.
I wish I had found your site sooner; it's better than the ones I've been on previously.
Thanks for your time.
By the way, if anyone needs a good prosthetist up here, south of
Seattle, just let me know. I found a great one that REALLY listens
& REALLY cares.
Best Regards,
Stephen Reynolds
LBKA 9/06
Stephen Reynolds <gracedandforgiven@yahoo.com>
Federal Way, WA USA - Sunday, December 17, 2006 at 01:04:09 (GMT)
Hello,
Please allow me to introduce myself. I am an above knee amputee
from Vancouver Canada. I lost my left leg as a result of a motorcycle
accident in 1974.
As a former paralymic swimmer and skier, I created an amputee
resource website at www.amputee.ca. My website is included in the
Amputee Coalition Links of Interest Section here:
http://www.amputee-coalition.org/links/nllic_links.asp?companytype=General%20Information
My website is also featured at the following international sites of interest to amputees:
http://talbronstein.org/archive/2004_12_larry_gardner.htm
http://www.amputee-online.com/ampucast/gardner/larry_gardner.html
http://www.ossur.com/template110.asp?PageID=255&newsid=865&Tpl=0
I have experienced phantom pain for many years, and I have written
an article on the use of Farabloc for treatment of my pain, which has
been overwhelming at times. Here are links to the articles:
http://www.amputee.ca/PhantomPainMain.htm
http://rehabilitation.medicalengineer.co.uk/Dealing+with+Amputee+Phantom+Pain.php?page=1
My experience with Farabloc has been very positive. Please let me
know if any of you have had and experience with Farabloc for amputee
phantom pain relief.
You can visit the Farabloc website at www.farabloc.com. Farabloc
has been the subject of many years of pain research and is proven
effective at relieving phantom pain. You can view the studies at their
website.
I hope the Farabloc limb covers can help others like it has helped me.
Please let me know if you have any questions about Farabloc. I hope to hear from you.
Regards,
Larry
Larry Gardner <larry@mrwebsite.ca>
Vancouver, Canada - Sunday, December 17, 2006 at 00:52:04 (GMT)
Dear fellow amputees,
I am a double bk amputee living in Rochester, NY. I have been a
member of the US Disabled Sailing Team since 1998. I had the good
fortune of representing the USA in the Sydney 2000 Paralympic games. I
am currently sailing with my friend David Schroeder in Miami, FL. David
is an English professor at Miami Dade College, a C 5-6 quadriplegic, a
former national and world record holder in wheelchair track and
marathon, and member of the US Disabled Sailing Team five times.
We are looking for an athletic, lower extremity amputee, that would like to tryout for a team
position in our Paralympic sailing campaign to represent the USA in Beijing, China in 2008.
If you are (or know of) an athlete that is either a single bk
amputee, double bk amputee, or single ak amputee; who accepts their
disability, and wants to compete at a world class level, enjoys being
on the water, and is willing and able to undergo intensive training in
Miami, we are interested to talking with you.
If you are the person I've described above... please contact me.
Keith M. Burhans, Rochester, NY USA KMBNOFEET@aol.com
Want verification? GOOGLE Keith Burhans Sailing
Keith M. Burhans <KMBNOFEET@aol.com>
Rochester, NY USA - Tuesday, December 12, 2006 at 03:44:31 (GMT)
My daughter Ella is almost 3. Ella was born with fibular hemi melia and her R foot was amputated when she was 9 months old.
She wears a prosthetic and does very well.
I gave her a hockey stick and a plastic golf ball to play with. She is
swinging both L and R but seems to be more accurate swinging L. She is
R handed.
So does that mean she will be Dominant R footed (her prosthetic leg) or L dominant?
If anyone knows the question to this answer please contact me.
Thank you for your time.
I got her R handed golf clubs for Christmas wouldn't you know. Didn't think about that!
Sue Rodriguez <suezrod@msn.com>
USA - Tuesday, December 05, 2006 at 17:57:39 (GMT)
Hello, everyone!
Well, I fly off to Oklahoma City for my ERTL surgery tomorrow. I just
want to let you know how much I've appreciated your support and
kindness. I feel really positive about this surgery and strongly feel
that this is my best option for the best possible outcome.
I'll have appointments with the doctor and at the hospital on Wednesday
(12/6), then will have the surgery first thing in the morning on
Thursday. I'll be in the the hospital 3-5 days, then in the hotel to
recuperate before my return on the 14th.
If you're interested in learning about the surgery you can go to
www.ertlreconstruction.com. If you click on the "Ertl Pages" tab and
then on "Ertl Amputees", you'll be able to read about several people
who have had the procedure.
Again, thanks for all of the support - it's meant so much to me.
Sincerely,
Tanya
Tanya McCabe <dangergirltm@hotmail.com>
Portland, OR USA - Tuesday, December 05, 2006 at 13:42:16 (GMT)
Am I glad I found you!
My name is Fred Schmerling, an 80 year old above-the-knee amputee.
I live in Wyckoff, NJ and belong to the Amputee Support Group at
Kessler Institute in Saddle Brook, NJ.
It's been about 2 years since I've been without my left leg. I was
operated on for a simple knee replacement and developed a Staph
infection in the hospital which could not be gotten rid of.
The end result was amputation.
I'm living at home with my wonderful wife who takes real good care of me.
I was a commercial artist all my life and now I've fallen in love with computers and love what they can do.
With my digital camera, I make greeting cards for friends to show I'm
feeling good and I surprized myself with all the terrific ideas I came
up with.
Hoping to hear from you...If anyone is interested I can send tham copies of my work.
Fred Schmerling <Uglysoto@aol.com >
Wyckoff, NJ USA - Tuesday, November 28, 2006 at 22:06:27 (GMT)
Sadieei Brown...
First off you are not a cripple in anybody's eyes. Each and everyone of
us amputees whether we were born with it or had to have it done have
gotten on with our lives. So in saying you are just physically
handicapped in some slight way.
To me a cripple is a person that has to have 24/7 care and is unable to help him or her self.
I am a bilaterial BKA (below the knee amputee). I lost them in
2002, and I am back doing about 95% of what I was doing before I lost
them.
Jack Pickerd <sparksjwp60@cox.net>
Jacksonville, TX USA - Friday, November 24, 2006 at 16:26:54 (GMT)
Jess in Saskatoon, Saskatchewan, Canada...
Thank you and a Happy Thanksgiving to you and yours.
Us cheerful cripples have to do what we can to pass on the knowledge that what has happened to us is just not that big a deal.
I take a lot of my inspiration from Stumps 'R Us Athletic Director Alan
Fisk. Alan is a QUADRUPLE Amputee...no arms...no legs...yet a more
cheerful, optimistic young man you would be hard pressed to find
anywhere.
Alan is a Career Counselor at San Francisco State University where he inspires others every day.
It just occured to me that Thanksgiving is not one of your Canadian holidays. I stand corrected.
Merry Christmas & a Jolly New Year!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, November 24, 2006 at 16:02:06 (GMT)
Hiya Dan,
I stumble upon your site every now and then and I figured I'd let you know that your sense of humor always makes me chuckle.
I'll blow a little of that sunshine now to reaffirm to you that
you're doing a wonderful thing here with Stumps R Us. I'm another one
of those two wheeled statistics, RBK back in 1999, and life is great.
Keep it up Dan!
Jess <mini-mojo@hotmail.com>
Saskatoon, Saskatchewan, Canada - Friday, November 24, 2006 at 15:50:58 (GMT)
i just came across stumps R Us .. was hoping you would post this for me
I am a born cripple, upper body, BE left arm .. if thats the correct
term. if not .. i have a left arm shoulder to wrist .. no hand ...see i
don t hang with the medicals, but am trying to find out if there is a
name for this state of affairs .. dont get me wrong i have little to no
issues with my crip stauts in my world, on my terms but i am trying to
find it for a reason ... i was born in the late 1960s, its not
thalidomide ..
if you want to know more ask away ... i seem to recall it started with M ... but i know nothing else ...
Sadieei Brown <sadieeib@hotmail.com>
London, England - Wednesday, November 22, 2006 at 22:32:35 (GMT)
I
became a right aka in may 05 after two years of pain, hobbling about on
a crushed leg from a drunk driver turning in front of my motorcycle.
Anyway, the internet is new to me and I,m browsing for sites about
amputee,s, and this one seem,s interesting. So maybe I can make some
new friends and get some information from experienced aka,s.
Thanks
Steven Pennington <scottp@webound.com>
Conway, MO USA - Tuesday, November 14, 2006 at 15:59:43 (GMT)
This
Guestbook is a lifeline for me. I'm a 45 year old divorced mother of 2,
and I'm moving towards an elective AK amputation for the same reason
I've heard over and over here: to get on with my life. I live in a
small town in upstate New York south of Ithaca.
Thirty-one years ago I developed chronic osteomyelitis, and because
of my parents' religion (Christian Science) I had no medical treatment.
I spent ten months without getting out of bed while the infection
spread and drained from my shin to mid-thigh. My knee joint was
destroyed and eventually fused itself. After six months in a wheelchair
and eighteen months on crutches I was able to walk on my leg which
fused at about eighty degrees. More importantly I was able to ride my
horses, and this was what got me through years of depression &
PTSD.
After twenty years I broke free from my religious mindset and saw a
specialist about my knee. In the meantime I'd been extremely active
training horses, riding at a racetrack and working on a dairy farm. The
doctor said all that could be done was to fuse my leg straight. That
was a no-brainer for me--I already HAD a fused leg and I was strong
& busy so I put the question on hold. This was in 1995.
Well, this year my body fell apart--my "good" knee is arthritic, my
left ankle very deteriorated and painful and I've lost a lot of
strength and flexibility. I can barely walk and can't stand still at
all. The orthopedic head at Buffalo General's teaching hospital said my
fused (ankylosed) knee is exceptionally rare and difficult and can't be
replaced. (He gave the operation a 5% chance of a good outcome, 30%
chance of a fair outcome.) He advised me (like two other doctors I saw)
to have my leg fused straight & eventually fuse the ankle as well.
I've been researching AK amputation and talking to a prosthetist to
get all the information I can. My hope is that amputation would give me
the chance to continue to ride, walk, and x-c ski and maybe even start
bicycling again. It seems to me the doctors project their own fear of
losing a limb & want to save my leg at all costs. I realize saving
limbs is their business, but I've HAD a fused leg for 30 years (in a
bent position no doctor in his right mind would have approved) and it
has not been easy and now it's wrecking my body.
I have an upcoming appointment with a vascular surgeon (in January)
to see if he'll do the surgery. Have any of you folks had to lobby this
hard for amputation? Are doctors really this ignorant of the positive
potential? It's a weird position to find myself in--I feel as though
I'm chewing off my leg to get out of a trap. The more I educate myself
about amputation, the more calm and relief I feel, and I know my
decision is mostly made already. My kids & friends are very
supportive but it's hard arguing my case with doctors! I just want to
end the pain and be able to MOVE.
Anyone with thoughts on this, please respond! Thanks so much for being there to hear me.
Dan--this is a great site you have.
"Life is either a daring adventure or nothing at all. Security is
mostly a superstition. It does not exist in nature."--Helen Keller
Liz Heywood <lheywood@localnet.com>
Spencer, NY USA - Thursday, November 09, 2006 at 23:37:27 (GMT)
Dennis Brown in Stone Mountain, GA
The BB-5500 Bidet Has The Touch Pad Control Module you are looking for
http://sanicare.com/bb-500.html
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, November 09, 2006 at 00:22:06 (GMT)
Dear Fern,
5'4" and 115 lbs is a small person and the Harmony by Otto Bock would
be so heavy it would feel like an anchor. I have been told the active
vacuum is so great that people do not complain about the weight.
I do not really believe that.
I get the same result with a expulsion valve allowing the natural
piston in the socket act to expel air until the pressure is equalized
and all motion is gone.
Wayne Koniuk, C.P. <limbart@sbcglobal.net>
San Francisco, CA USA - Wednesday, November 08, 2006 at 14:34:41 (GMT)
Researchers
at the University of Toronto and around the world want to know about
your experiences with upper limb absence. This anonymous survey will
ask about your lifestyle and experiences with limb absence, your
healthcare experiences, and your views on upper limb prostheses. By
filling it out, you will help us understand what you want (or don't
want) in your future healthcare and/or prostheses. You will contribute
to important research and have the chance to share your experiences and
opinions. Plus, you could win a great prize valued at $250!
If you have already completed our survey, thank you for your time
and participation! If you would like to complete the survey, it can be
found online at:
http://www.prismlab.org/survey.htm
The survey takes about 20 to 30 minutes to complete and is
available in English, Spanish, French and Dutch. We would love to hear
from you and will be sure to communicate the opinions expressed to
healthcare providers, prosthesis designers and of course, our
participants worldwide through conferences, journals, and public
reports.
Please feel free to contact me if you would like more information about this survey. Thank you!
Sincerely,
Elaine Biddiss, Survey Coordinator
PRISM Lab
Bloorview Kids Rehab, 150 Kilgour Road, Toronto, Ontario, Canada M4G 1R8
T: 1-416-425-6220 x3270 or 1-800-363-2440 x3270 (toll-free)
F: 1-416-425-1634
E-mail: esurvey@prismlab.org
Elaine Biddiss, Survey Coordinator <esurvey@prismlab.org>
Toronto, Ontario, Canada - Tuesday, November 07, 2006 at 15:50:03 (GMT)
I
am a recent BK amputee (01/04) on the left leg with partial paralysis
and a messed up hip on the right side so my prosthetic leg is my good
leg.
I am in need of my second prosthetis.
My current one is a pin and lock system. I am interested in a vacuum
system like the OttoBock Harmony but my prosthetist is against it
saying the liner tears a lot and I can't risk a fall.
Please email me with your pros or cons for vacs versus pin lock. I
am 5ft 4 and weigh 115lbs. I am really struggling with this decision.
Thanks,
Fern
Fern Alix LaRocca CFP EA <fern@afdadvisors.com>
Sunnyvale, CA USA - Tuesday, November 07, 2006 at 12:22:16 (GMT)
Hi All,
I'm am a blind, bi-lateral BE (below elbow) amputee, having lost my
hands and eyesight, most of my hearing, most of my face (which is no
big loss, since I didn't look all that good prior to the explosion
anyway), and my right kneecap, in a demolition accident in 1984.
I was serving with the Army at Ft. Lewis, WA, when two pounds of
plastics detonated slightly before I intended, screwing up an otherwise
nice Sunday afternoon!
Being blind, I had a Krukenburg(?) procedure on the right stump
(about 10 inches long), which is where they split the stump from the
end, to the elbow, then separate the muscles, wrapping them around the
two bones in the forearm. This gives me a lobster claw-type forearm,
which allows me to somewhat feel what I grasp.
I rotate my wrist clockwise to close the pinchers, and
counter-clockwise to open.
Prosthetics are not that useful to the blind, since I cannot "feel/see" what I am grasping!
My left stump is about 6 inches long, and too short for a "Kruk."
I just finished my degree at University of Phoenix, and am employed
as a Software Developer for Freedom Scientific, Inc., a developer of
the JAWS (Job-Access With Speech) screen reading package that allows
the blind to use computers.
For keyboard access, I use an outdated Adapt-2-U, a device that
allows me to do keyboard input via Morse code. I can manage 55 wpms
with this method, and use it to access my job, banking, shopping, etc.
One of my challenges (other than my 11-year old daughter, going on
30), is that I am trying to find a bidet that has controls I can
operate!
I currently have an American Bidet, and it has a lever just to the
left, and behind, that I can reach with my left stump, but the company
is out of business, and the seat doesn't fit standard toilets all that
well.
I would like one with the touch pad, but one that could have the pad
mounted about shoulder-level (when sitting) that I can just touch with
my left or right stumps.
Perhaps a remote?
Anyone got any ideas on these puppies? Perhaps a foot pedal?
Any assistance would be appreciated!
PS:
I cracked up when I saw/heard the name of the site on Google!!
Thanks,
Dennis...."Visually impaired as a bat!"
Dennis Brown U.S. Army Retired <DennisTBrown@Comcast.net>
Stone Mountain, GA USA - Saturday, November 04, 2006 at 22:26:23 (GMT)
My
dad just had his right leg amputated yesterday. He has been suffering
from rheumatoid arthritis for a couple of years. Initially, they only
took the toes, but due to the restrictive blood flow, the wound was not
properly healing.
I knew that a leg amputation was a possibility, but it was so
devastating nonetheless. The only thing I can think about is how active
my dad used to be, how he walked me down the aisle, how things will
never be the same.
Has anyone out there suffered an amputation caused by RA or know of someone who has?
I know that he has such a hard battle ahead, which could be compounded by his illness.
Does anyone have any advice or words of encouragement?
Thank you.
"There are only two ways to live your life. One is as though
nothing is a miracle. The other is as though everything is a miracle."
---Albert Einstein, 1879-1955---
Celeste Barber <cel_e2001@yahoo.com>
Culloden, WV USA - Tuesday, October 24, 2006 at 18:45:42 (GMT)
Tom...I'm
an honorary Stumps member. I had both hips replaced this past year. I
say I had my amps at the top instead of the bottom.
I'm also a retired doc (family practice and ER)
I have a BMW K1200LT with a sidecar.
I read your post on the Stumps guestbook and thought you'd like the following site.
http://www.mtb-amputee.com/motorcycleamputee.htm
When you're going through Hell, keep going.
Winston Churchill
"A rock pile ceases to be a rock pile the moment a single man contemplates it, bearing within him the image of a cathedral."
Flight to Arras
Antoine-Marie-Roger de Saint-Exupery
Curt Kovacs, M.D.
Sun City , AZ USA - Thursday, October 12, 2006 at 23:12:23 (GMT)
Thank you...I'll research Hosmer's options and availability.
Rick Carlsen <RickCarlsen@prodigy.net>
USA - Wednesday, October 11, 2006 at 12:25:03 (GMT)
I
have started the only gay (LGBT) amputee peer support and discussion
group in San Francisco. Our first meeting was Saturday. We will be
meeting monthly. I have done a lot of community outreach with more to
come, and I thought there may be some in your group who might be
interested.
I am myself a RBK from a motorcycle accident in 1992.
We have a simple website set up at www.sanfranciscogayamputees.org that
I update with meeting schedules and contact information. I have also
got a listserve set up.
The next meeting is Saturday November 11 from 11:30 am to 12:30 pm at the LGBT center at 1800 Market street in San Francisco.
Peter Little <peterclittle@msn.com>
San Francisco, CA USA - Tuesday, October 10, 2006 at 00:16:47 (GMT)
Tom
Lanno in Boone, NC...Your best bet is to contact The Amputee Coalition
of America's National Limb Loss Information Center Toll Free:
(888)267-5669
The ACA has a national data base of Amputee Support Groups.
Good luck Tom!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, October 07, 2006 at 12:42:35 (GMT)
Dan...I
am trying to keep a positive attitude about the impending amputation of
my left leg due to diabetes. I enjoyed your photos and approach to
dealing with things.
I, too, am a motorcyclist and while things look somewhat bleak today, I
will keep your "Stumps R Us" thoughts to help me through this.
Do you know of such a support group in the north western North Carolina area? (Boone, NC)
Be well -
Tom Lanno <tplanno@bellsouth.net>
Boone, NC USA - Saturday, October 07, 2006 at 12:37:13 (GMT)
The Inspirational "This Old Cub" and Stumps R Us
"This Old Cub" is our critically acclaimed documentary feature about
Ron Santo, former All-Star 3rd Baseman for the Chicago Cubs. Ron is a
double amputee who has lived with diabetes for over 48 years. The
second act of our film documents his courageous rehabilitation after
his second leg amputation.
Ron's story has already inspired thousands of people who suffer from
diabetes and, through our film, we have raised $500,000 for the JDRF.
It is our goal to get This Old Cub out to as many patients as
possible across the country who have undergone, or will soon undergo,
amputations. We know Ron's story can have that same kind of positive
impact on the people out there who are amputees. We would like to
create a win-win situation with an organization that shares our goal in
getting this film out to as many patients as possible.
Your involvement could be as simple as reviewing the film for your
members but we are certainly open to any ideas or thoughts you might
have.
There is additional information on our website, www.ThisOldCub.com.
I'll look forward to hearing from you.
And if you are a SF Giants fan, please do not hold that against us since Ron played for the Cubbies.
Patrick <contact@thisoldcub.com>
Chicago, IL USA - Thursday, October 05, 2006 at 22:31:35 (GMT)
Hi...I have a question for you.
My name is Christie Hagedorn and I have been an amputee since 1985
due to an accident. I have a left B/K trauma amputation which has lead
me through many journey's. 11 years on crutches and 22 surgeries.
I am a fitness trainer for the YMCA of Davenport IA. My dream is to
start up a huge program through the YMCA's of America to get amputee's
into fitness and personal training and come for mental and emotional
reasons as well!!!
I have personally trained non-amputees and they are sooo encouraged by me and what i have done and can do just being a amputee.
I now have my 4 kids grown. I would love to get other amputee's excited and about exercise and fitness!!!!!
If you know anyone who would love to be personally trained or if you have any suggestions i would love your input!!!!
Thank you for everything you do for amputees.
christie Hagedorn <tim_christie@mchsi.com>
Davenport , Iowa USA - Wednesday, October 04, 2006 at 19:10:17 (GMT)
Reba
Goodwin...I elected to voluntarily amputate in order to get on with my
life. I never regretted the decision. I didn't want to face a life of
UNECESSARY pain and limited mobility. The amputation solved that
problem COMPLETELY!
Your decision is a sound one and I have a recommendation for you.
Please consider having an ERTL surgical amputation. You will find
links and full explanation of the procedure on page one of this web
site.
Be sure to get a video tape of the ERTL procedure and choose a
surgeon recommended and trained by the ERTL brothers. (the tape is
available from the Barr Foundation in Boca Raton, Florida). Be certain
you and your Doctor get the follow up protocols from the ERTL trained
surgeon.
Good luck in your second chance at a better life!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, October 04, 2006 at 13:32:28 (GMT)
I
am a 35 yr old mother of two preschoolers. I live north of Boston. I
have had 13 surgeries in 15 years on my left knee, but with many more
to go.
I have been considering electing an above-knee amputation to improve the quality of my life.
As an athlete in high school I tore my ACL, meniscus and cartilage.
Half a dozen surgeries later, I was finally diagnosed has having a
"malalignment", my femur and tibia did not line up properly,
presdisposing me for all my injuries. I had my tibia cut in half and
rotated and pinned. However, still having caritlage issues, I grew bone
spurs which dug holes into my femur. I had a cadaver bone transplant
which subsequently failed.
I had doctors tell me the only thing left to do was to pin my femur and tibia together, which to me would be no life at all.
Last year, I finally found someone to give me a total knee replacement-
he said it was one of the worst knees he has seen, like an 80 year old.
The replacement had given me some relief, but I only get between 15
degrees and 90 degrees of mobility.
I now keep having to have aggressive scar tissue removed. Each time it
is surgery, then physical therapy and then the scar tissue comes back
within weeks of being removed. My Tibia is also osteoporotic and every
step is painful. All of which has caused scoliosis in my back and pain
daily.
I am weary, want to get off the pain meds and be an active mother with
my two children. Emotionally, I can't handle having to keep going in
for experimental surgery after surgery, just to end up needing full
replacements every 10 years or so.
I just want to get healthy again, play with my children and not
have to watch from the sidelines because I am in pain or on meds.
According to your introduction, you said you do not regret your choice. Do you know of others who have elected amputations?
Thank you for listening.
Reba Goodwin <rgoodwin22@hotmail.com>
USA - Wednesday, October 04, 2006 at 13:22:46 (GMT)
Rick Carlsen in Fayetville, Arkansas...Stumps 'R Us C.P. Wayne Koniuk suggests HOSMER.
daniellle cavezza <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, October 03, 2006 at 13:02:50 (GMT)
I have a pretty short stump on my left arm, only 3 inches below the elbow, due to birth defect.
I'm 46 and have worn my prosthetic my entire life, a split socket
elbow joint and hook. My lack of leverage has required the use of a
"step-up" style elbow hinge. The problem is they get sloppy after a few
months, and there doesnt appear to be many suppliers/styles. I tried
one by Otto Bock recently for the 1st time. It worked great about 6
mos, then broke.
Does anyone know a supplier of a good, sturdy step-up hinge??
Thanks.
Rick Carlsen <rickcarlsen@prodigy.net >
Fayetteville, ARK USA - Friday, September 29, 2006 at 12:09:34 (GMT)
Sarah Iverson Sundance Catalog Community Relations
Contact The One Shoe Crew. Their address is:
One Shoe Crew
9328 Aizenberg Circle
Elk Grove, CA 95624
That is precisely what these good people do.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, September 28, 2006 at 00:24:36 (GMT)
Hi there
My name is Sarah an I work for Sundance Catalog we have a large
amount of shoes we receive from vendors as samples, because they only
send one shoe we don't have any need for them and are looking for a
place to donate them to. Is that something you would be interested in?
Sarah Iverson
Sundance Catalog
Community Relations
Sarah Iverson <Sarah.Iverson@Sundance.net>
USA - Thursday, September 28, 2006 at 00:21:08 (GMT)
My
husband is an amputee who has lost both of his lower legs below the
knee to diabetes. We live in Oregon and he is looking for a support
group.
He would like to talk to others that are similar to him. He is only 79
years old and has a wonderful attitude and doesn't feel sorry for
himself.
Please let us know of a localsupport group.
Thank you
Daniel and Judy Clark <ju5cl@aol.com>
Riddle, OR USA - Tuesday, September 26, 2006 at 12:55:22 (GMT)
Lorraine Skiles in Union, MO... If the young man is in Mo.
he most likely has coverage under Medicaid, provided he wants to be helped.
He should make an appointment for an evaluation and estimate for
rehabilitation with a local prosthetist that most likely will submit
his payment to Medicaid.
Go to www.abcop.org and enter the city and town the amputee lives in and ask him to contact them.
If he does not qualify below are our funding parameters.
The Barr Foundation Amputee Assistance Fund was established in 1995
through grants from the Barr Foundation. The mission of the fund is to
provide assistance to amputees that cannot afford limbs, have no other
financial resources, and to promote quality prosthetic care for all
amputees. This is accomplished directly by providing reimbursement for
materials and maintenance costs to prosthetist that provide limbs to
amputees who have no other source of funding. This program is a
cooperative effort between the Fund and the amputee's prosthetist to
improve the quality of life of the amputee.
Benefactor sponsorships maybe also made available to those amputees
whom are not USA citizens and have individuals, churches or business
organizations to make tax deductible donations to the Barr Foundation
whose funds can be specifically utilized for a select applicant.
In order for the amputee to receive an application, they must
contact a board certified or state licensed prosthetist that may be
willing to sponsor them.
See:
http://www.abcop.org
The prosthetist ,considering sponsorship, must request the application directly from us by calling 561-394-6514.
It is suggested that the amputee be evaluated by the prosthetist that
may be sponsoring him/her, prior to them requesting an application in
the amputee's name. Please provide the prosthetist with the amputee's
name, address, date and level of amputation and telephone number.
At this time bilateral amputees are not being processed for funding
unless another source of funding from an individual(s) or
organization(s) is participating to share equally in the reimbursement
level as outlined in the application.
The Applicant will be reviewed and interviewed for the screening
process by one or more members of the review committee upon submission
of the application, which is to be completed by both amputee and
prosthetist. The applicants will be considered based on need, first
time for prosthetic rehabilitation, age and general health conditions.
Sponsoring prosthetist must accept our reimbursement levels as payment
in full and provide a six
(6) month warranty for adjustments and components used.
First time amputees will be required to receive gait training as a
condition of the approval by the sponsor, physical therapist or other
qualified personnel at no cost to the applicant.
The application must be completed within 30 days and returned to us
with a $25.00 nonrefundable application fee. We will then have 4-6
weeks to process the application and the prosthetist will be notified
as to approval or denial. If the application is not received within the
30 day period of sending the application it will be cancelled and the
prosthetist considering sponsorship will have to resubmit.
We will request that proof of denial of any other funding resources be provided at the time the application is submitted.
Most likely the patient can qualify for Medicare/Medicaid funding.The prosthetist can help you determine that.
Thank you for your interest, if there is anything else we can do, please e-mail or give us a call at 561-394-6514
Sincerely,
Anthony T. Barr
Barr Foundation
Tony Barr, Founder Barr Foundation <t-barr@t-barr.com>
Boca Raton, FL USA - Monday, September 25, 2006 at 23:19:47 (GMT)
I
am a nurse who is caring for a quad-amp. She is a new amp and we are
trying to find ways for her to adapt and be able to go home pending
prosthetic fittings. My problem is this.
She is able to toilet herself but is unable to don and doff
clothing. I am interested in tips from others as to ways that they have
adapted clothing to be more independent.
My client is a bilateral above the knee and missing all digits and
part of the palms of both hands. Any help or advice that you may be
able to direct in my way would be greatly appreciated.
Thanks so much.
Mary Ann <nursemoondancer1014@verizon.net>
USA - Monday, September 25, 2006 at 15:28:12 (GMT)
Lorraine Skiles in Union, MO...Could you be a bit more specific?
For example:
1) A/K or B/K
2) His name
3) Where he lives
4) If he is a minor who would act as his guardian?
5) Is he a U.S. citizen?
6) How would he be contacted?
I suggest you contact Tony Barr of the Boca Raton BARR Foundation
with these specifics already answered. Perhaps Tony can assist you and
your phantom amputee.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, September 25, 2006 at 15:20:30 (GMT)
I
have just learned about a young man-- no insurance, who is minus a leg.
His mother is deceased and the father likes beer --- So there is no
support for this youngster.
He is a teen ager, I think.
I do not have all the details about how he became an amputee so am
asking if anyone on our mail list might be able to give me information
that I can, in turn, pass on to someone who is interested in getting
this person on his two feet again and out of the wheelchair.
Lorraine Skiles <lorskile@fidnet.com>
Union, MO USA - Monday, September 25, 2006 at 15:14:03 (GMT)
I am a television researcher based in the UK looking for people who have survived through extreme circumstances.
We are in development with a new science based programme and in
particular we are looking for people who have had to cut off a part of
their body to survive and we want to hear about their brave story. Just
wondering if you know of anyone who maybe interested in talking to me
about their experiences and their personality which gave them the will
to survive.
Hoping to hear from you soon.
Emma Martinhttp://www.angliafactual.com
Emma Martins
Associate Producer
Network Factual
ITV Anglia
(00 44) 1603 752275
www.angliafactual.com
Please visit the official ITV website at www.itv.com for the latest company news.
Emma Martins <Emma.Martins@granadamedia.com>
UK - Monday, September 25, 2006 at 15:05:12 (GMT)
Dave
Paschold in Lincoln, NE...Yours was a brilliant and soundly educated
choice to have chosen Orthopedic Surgeon William ERTL to perform your
B/K amputation.
The ERTL Procedure has changed so many lives into productive, positive, relatively pain free futures.
Continued good fortune and even more good decisions.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, September 12, 2006 at 21:16:39 (GMT)
A
brief note to let you know that I was in to see my prosthetist (Jason
Dean) this morning, and was able to walk on two feet for a while.
He had made the prototype, and will make a more durable socket that I expect to get into next week on the 21st.
There was some pain to the walking, but nothing out of the ordinary for the scope of what has happened in the last 8 weeks.
Jason indicated that it would be highly improbable that I would be into
anything this soon had I gone through surgery with a NON-ERTL BK. Dr.
William ERTL is my hero!
It felt great to be back up on two feet for that short time.
Thanks for the interest. I will keep you updated.
Dave Paschold <dlpaschold@agriliance.com>
Lincoln, NE USA - Tuesday, September 12, 2006 at 21:10:45 (GMT)
Ken
I'm praying for you. Hope all goes well!
Agnes
Agnes Gootee <agnes.gootee@navy.mil>
USA - Monday, September 11, 2006 at 12:26:14 (GMT)
Jim
Fay in Boston, MA...Join the Stumps 'R Us CREW? With your whimsical and
positive attitude we would love to have you as a dues paying active
member.
Send your USPS address and phone number to:
Stumps 'R Us
Attn: Dan Sorkin
2109 Skycrest Drive #1
Walnut Creek, CA 94595-1828
By return mail I will send an Amptee Survival Kit PLUS a Stumps 'R Us
Membership application including an invitation to our next event in
October in a Concord, CA Buffet Asian Restaurant (details on page one
of this web site) It is well worth the plane ride to attend.
daniellle cavezza <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, September 09, 2006 at 19:19:37 (GMT)
Hi Dan
I would like to join your crew.
I am 58 and in 2003, I was in the Lobby of Beth Israel Hospital of
Boston waiting to see a Vascular Surgeon for a Lower Leg ByPass when my
appendix burst and I had the DT's.
After 3 Months in a Coma I awoke to find My Left Leg had gone to Heaven without Me. I also had a Stroke while "Napping"
Never get sick in early July-You are SURE to meet Doogie Howser-I am told.
As a Graduate of Villanova, I spent time making a living as a
Manufacturers Representative-Office Supplies(B/4 Staples Etc), Small
Leather Goods and fine Writing Instruments(Pens).
I have logged over 14,000 NM in 3 Boats of my own and currently STILL sail CONNEMARA, a Sabre Sloop.
In addition to 3 Months at Beth Israel, I was lucky enough to get
into Spaulding Rehabilitation Hospital in Boston, one of the Worlds
best.
Over 2-3 More Months, they taught me how to walk again. They also decided that I was an Alcoholic-Imagine!
I came from there yesterday after attending an Amputee Support Group as an outpatient. There were 3 of us. SO SAD.
Best
You can find Me on EBAY as:
TheCaneGent
I could not find "Nice" Walking Sticks anywhere.......
Jim Fay <JAMESLFAY@cs.com>
Boston, MA USA - Saturday, September 09, 2006 at 19:10:04 (GMT)
David Alstone ~~~~~~~~I'm not advocating breaking the law but I also know that prosthetics are being sold or auctioned on eBay.
I can't guarantee reliability or responsibility for any item there but
you as an individual and your friend as Americans can buy anything you
want there.
The legal mumbo jumbo about buying used prosthetic devices in America
is true but I think the repercussions are for CP's and O&P Clinical
Offices.
My thought is it's like the "DO NOT REMOVE" tag on the bed pillow. Who's to know where you got your leg as long as it works.
As always shop wisely and do your research
On a comical side I hear outdoor patio umbrella stands and Duct tape work well..
Have a good week
Lutz, FL USA - Thursday, September 07, 2006 at 22:50:31 (GMT)
I hope that at least someone will help with info or good advice
I’m writing on behalf of my friend. His situation is rather
complicated, he isn’t fluent in English so he cannot advocate for
himself.
He is a young,intelligent guy, who just started his adult life.
He is not covered by any insurance and he can’t afford to pay for
his prostheses after he lost his leg and his job (he was/is a
construction worker).
He needs to work again in order to buy himself a new prostheses. In
order for him to get back to work, he needs a temporary but working A/K
prostheses, There is no other means, options or any “happy endings” in
this case.
I know that artificial limbs cannot be reused in the United States.
We don’t want to break the law. But a technician, who is familiar with
these matters has offered to assemble a prostheses for my friend. All
he needs are the mechanical parts.
My friend is desperate and has no other choice but to use this
temporary prostheses, until he saves enough money to buy a new one.
If anyone is willing to spare an old, right leg above knee prostheses to be disassembled, please contact me.
That would be appreciated.
I will cover all the shipping expenses and will be forever grateful
for helping my friend in this very difficult, uncomfortable and uneasy
situation.
Any other sugestions, tips advices may help as well.
Thank you...
David Alstone <alstonex72@yahoo.com>
USA - Monday, September 04, 2006 at 15:26:15 (GMT)
Hi, Amy...
I am the wife of a diabetic amputee (LBK) who is trying to heal some
ulcers on his stump and on his remaining leg. I have been reading the
posts on this site and they have been very helpful to me.
I am looking for support for myself as the caregiver and I can offer you support on your journey. Write if you would like to.
Mary in Massachusetts
Mary <WeRPenguin@aol.com>
MA USA - Monday, September 04, 2006 at 05:33:29 (GMT)
Amy Pederson in Houston, TX...
The best place to find support groups in your area would be through the ACA (the Amputee Coalition of America).
You can scan their Web site at:
http://www.amputee-coalition.org
Or E-mail them directly at:
editor@amputee-coalition.org
Or call them TOLL FREE at:
(888) 267-5669
Dan Sorkin <DanSorkin@gmail.com>
Santa Rosa, CA USA - Saturday, September 02, 2006 at 16:30:48 (GMT)
Hi...
My husband is 34 and just had a bilateral below the knee amputation,
and now has had several fingers removed with the possibility of having
more removed and possibly his hands.
I am looking for some info and support for him.
Thank you!
Amy Pedersen <Meandmycuties@houston.rr.com>
Houson, TX USA - Saturday, September 02, 2006 at 16:25:22 (GMT)
Hi...
I have had a Harmony system since Nov of 2005. I am very
displeased with the durability of the inner liners. My prohstestist is
also not pleased with them. They are only lasting about a week or two
before starting to crack. They are having major quality issues.
The first one I had lasted about 5 months, and I thought that was bad, boy was I wrong.
Do you know of any other inner liners that will work with a Harmony VASS system?
I am going to try one of Smith’s evac inner liners to see how they hold up. I need something that will last.
The Harmony is more comfortable, but I need something that I know will not break every other week.
Thank you.
Lee Thomas <leethomas@prodigy.net>
USA - Wednesday, August 30, 2006 at 03:23:49 (GMT)
Linda Hogan
Stumps 'R Us Certified Prosthetist Wayne Koniuk of San Francisco Prosthetics suggests that you call:
Certified Prosthetist Stan Patterson at (407) 448-7969.
Stan fits hip disarticulations allowing the user to RUN!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, August 26, 2006 at 02:25:33 (GMT)
Linda Hogan...
It is remarkable how quickly a 14 year old will recover from a
devastating injury. They are much better at it than we "adults"
sometimes are.
From your description it does not sound encouraging for a
prosthetic limb to be prescribed. There has to be some residual bone
structure (femur) for the prosthesis to be attached.
That said, it does not mean that his athletic days are over. One
legged skiers, snow boarders, drivers and pilots have conquered the
problem with all kinds of ingenious solutions.
Send me your name & USPS mailing address. By return mail I
will send an Amputee Survival Kit including a pamphlet bearing that
name authored by Tony Barr of the Boca Raton, FL based Barr Foundation.
I have Cc CEO Tony Barr of the Barr Foundation, C.P. Wayne Koniuk,
C.P, Julie Chandler and Angela Briguglio. Angela is a bi-lateral to the
pelvis amputee and member in good standing (pardon the pun) of Stumps
'R Us.
Please keep me up to date on what progress is made with your 14 year old Grand Nephew.
Dan Sorkin <DanSorkin@gmail.com>
Santa Rosa, CA USA - Friday, August 25, 2006 at 22:06:02 (GMT)
Dear Dan,
I read about you on line while searching for information that might
help my fourteen year old grand-nephew who. two weeks ago. was struck
by a drunk driver while he was helping to push a car that had run out
of gas. His left leg was nearly severed at the pelvis, and for the past
two weeks doctors have beenworking around the clock trying to save his
leg; however, it doesn't look hopeful. If an amputation is done, we
have been told that because his hip joint is affected, there can not be
a prothesis.
Is this correct information?
I guess having all three leg joints, ankle, knee and hip, impaired is something that is impossible to replicate.
Naturally our whole family is devastated and we are searching everywhere for helpful information.
Shane is the most wonderful teenager imaginable. He has always been a
positive and loving boy which I'm sure will help him with his recovery.
But his life will never be the same and the adjustment will be a great
one for him since he is very athletic.
We are wondering what kind of referrals we might offer him that could
help him with his recovery and subsequent adjustment??? Also, we wonder
if there might be a really excellent specialist somewhere that we could
contact on Shane's behalf?
Thank you so much~ we are greatly appreciative of all the help we can get!
Linda Hogan <lindarhogan@cox.net>
USA - Friday, August 25, 2006 at 22:03:11 (GMT)
Neal Seigfried in Bixby, OK...About the GHOST FOOT
I made a flexible cast of the socket and foot. I used this so the guy
could have his leg back. I filled the cast with a pipe inserted so the
cast would not break. A parting agent was applied and more plaster
added until the desired shape was accomplished.
1/8 Surlon was draped and vacuum molded over this with the seam down the back. It Was removed trimmed and polished.
Your local Prosthetist or college artist should be able to do this.
Good luck!
Wayne Koniuk, C.P. <limbart@sbcglobal.net>
Santa Rosa, CA USA - Wednesday, August 23, 2006 at 03:18:46 (GMT)
Neil Seigfried in Bixby, OK...
No penalty...no foul!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, August 22, 2006 at 03:51:30 (GMT)
I'm sorry I forgot my info. It is as follows:
Neal Seigfried
11516 S 66th E Ave
Bixby, OK 74008
Thanks for the reply
Neal Seigfried <puglover22@cox.net>
Bixby, OK USA - Tuesday, August 22, 2006 at 03:50:06 (GMT)
Dave Paschold...
I am an amputee and a Seal In user, as well as a Technical Service
Representative for Ossur (who makes the liners). Feel free to contact
me directly and I can try to answer any questions you have as well as
try to find you someone in your area.
Best regards!
Matthew Henderson <mhenderson@ossur.com>
USA - Tuesday, August 22, 2006 at 01:39:19 (GMT)
You have a lot of questions in your message.
It is going well, and I will be very interested in helping spread the word about the Ertl Procedure, as things progress.
My prosthetist here in Lincoln is Jason Dean, with Hanger. He has had
experience in fitting Ertl patients, and is excited to work with my
case.
I have spent countless hours studying and reading information on
the ErtlReconstruction website, as well as the Stumps ‘R Us website,
and as I get farther along, will be very willing to help out any way I
can.
These resources led me to the procedure, and I realize how valuable it is.
On our 7 hour trip home to Lincoln from the hospital in Oklahoma City,
just 5 days after surgery, I realized that the trip home was less
painful (granted, I was on some strong pain meds) than the phantom pain
I was experiencing traveling to OK City! I had sensed in the Ertl
patient testimonies a bit of “unbridled enthusiasm” that almost appears
unreal----until you go through it yourself to realize the difference!
If the healing and fitting go as well as they have so far, I am eager
to get on with things.
We will stay in touch!
Dave Paschold <dlpaschold@agriliance.com>
Lincoln, NE USA - Tuesday, August 22, 2006 at 00:54:09 (GMT)
David,
We are glad you are doing well with your Ertl and hope that the final outcome is successful.
The Barr Foundation funded the Ertl videos and supports and promotes the Ertl worldwide .
Could you also help us and others contemplating the procedure with a Ertl Amputee testimonial once you are successfully fitted?
Who will be your prosthetist?
Would you review the other 27 Ertl patient testimonials at
www.ErtlReconstruction.com via Ertl Patient link, and consider doing
one after your fitting?
Thank you.
Tony Barr Founder Barr Foundation <t-barr@t-barr.com>
Boca Raton, FL USA - Tuesday, August 22, 2006 at 00:43:09 (GMT)
Madonna
Neely & Roy Webster...Please call Driving Specialties Limited and
tell them I suggested you call. They are specialists in adapting car
controls (moving the accelerator, etc.) for amputees.
They are located in Vallejo, CA but should be able to suggest a vendor in Seattle or Spokane for you
Call (707) 553-1515
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, August 21, 2006 at 01:58:47 (GMT)
My
Dad is an 82 year old amputee, right leg. He has been trying to get his
Town Car ready to drive and is having trouble finding a place to
install the necessary equipment.
We live in rural Washington state, do you have any advice on who to
contact or where to begin? Spokane or Seattle are cities we could take
the car to and get this done.
Any information would be appreciated.
Thank you!
Madonna Neely & Roy Webster <webbrf@charter.net >
Rural, WA USA - Monday, August 21, 2006 at 01:47:18 (GMT)
To: Kathy Shank
Subject: New Amputee/Show him these videos -read him the testimonials.
http://www.ertlreconstruction.com/
Kathy,
Send me your address for mailing a book that I think will help
motivate Ryan (and you) to know he is able to do everything he once did
with proper prosthetic rehabilitation and the proper mind set. Life
isnt always beautiful but it is a beautiful ride provided you make it
that way !!
Here is what they are saying about the 2006 Amputee Survival Guide that I will send to you.
"A Survivors Guide For The Recent Amputee is the premier amputee
resource booklet. Published and available from the Barr Foundation, it
promotes beneficial amputee education. To realize their full potential,
all amputees need to make intelligent and informed healthcare
decisions. Obtaining accurate reliable information is the key to this
endeavor. The Survivors Guide is designed to provide all the necessary
answers. Written by amputees, for amputees, this important diminutive
publication is straight forward, well reasoned, logical, and
informative".
Kim L. Ruhl CPO
Good luck to both of you!
Tony Barr Founder Barr Foundation <t-barr@t-barr.com>
Boca Raton, FL USA - Friday, August 18, 2006 at 03:15:10 (GMT)
Kathy Shank in Wedgeville, WV...Be honest with your son about his loss. Believe me, he knows a part of him is missing.
Present the positive aspects of what happened to him. He is alive...his
brain is not damaged...and he has lots of family and medical support
AND thousands of people have suffered the same loss and got on with
their lives with a positive attitude.
He will have emotional ups and downs...all normal. Having positive people close by is what he needs.
With a below knee prosthesis there is literally NOTHING he cannot
do once he learns to walk, run, dance, fly, play basketball or anything
else he did before the amputation in rehab.
After losing my leg I earned an Instrument Flight Instructor
Certificate with Commercial priviliges and flew as Chief Pilot for an
American Corporation until retirement.
He should feel free to E-mail me any time if he has any questions. I promise to answer immediately.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, August 17, 2006 at 22:02:22 (GMT)
My
son, Ryan, was in a terrible car accident August 8,2006. He lost his
left leg below the knee. He is not awake yet and does not know of his
loss.
What do I say, how do I help him to be strong?
Kathy Shank <heritage11@starband.net>
Hedgesville, WV USA - Thursday, August 17, 2006 at 21:46:19 (GMT)
Lowell
Sullivan...Sorry to hear (read) about your troubles with your socket.
I’m an AK and have been living with the same issues for almost 20
years.
1) I much prefer the suction socket to anything else
2) I am in pretty good physical shape, and have an extremely long residual limb
3) When I lose weight I have those same “slippage” problems and when I exercise and the leg sweats to much.
4) I never use the liquid fit – don’t like the way it feels… I use a pull sock only.
I simply live with those same several annoyances (except the liquid
fit part) and I have learned to keep my weight fairly consistent and I
have not really found any other viable options – I wish I could be more
helpful. If there is anything I can do or add please let me know.
All my very best ~LNK
Laurence N. Kaldor <Phenix7@msn.com>
Los Angeles, CA USA - Thursday, August 17, 2006 at 14:29:48 (GMT)
I am a very active BK.
The problem is I keep getting holes in my suspension sleeve's, and this causes air leaks so I end up losing my vacuum.
All I have to do is bump my shin against something and the inner
gel liner splits, You can't see it from the outside but the hole is
through the gel.
Has any one had good luck with any particular sleeve, or would I be better to try a neoprene sleeve?
Any advice would be much appreciated.
I would love to find a sleeve made of a rubber like an inner tube.
Todd VerWys <ToddV@classicdie.com >
Lowell, MI USA - Tuesday, August 15, 2006 at 18:36:15 (GMT)
Gabrielle,
There are many different ways of expressing love for another human
being. Honesty and reality are but two devices in the quiver in the
thoughtful caregiver be he (or she) a spouse, friend or acquaintence.
Verbal or physical abuse should be tolerated by no one no matter
what the circumstance. You don't help someone by acquiessing to their
fearful outbursts. You tell them the truth...always. The only sin is in
abandoning the individual UNLESS they are physically abusive or place
you or others in danger.
Political correctness never cured anybody of anything.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, August 15, 2006 at 18:23:15 (GMT)
Dan this is Gabrielle from Jacksonville Fl in the U.S.A.
As noted in my previous post to Mary Hulser I am a care giver to my
husband who has a brain tumor and am also an amputee, so I am in both
situations of living with someone who has had some thing horrible
happen to them as well as having lost my leg to a misdiagnoses, so I
was speaking to Elaine from both experiences.
My husband went through lashing out at me, but instead of telling him
to get over it and move on, I have the compassion to understand and
work with him where he is at in his healing process. When we love
someone they are not a burden when they need to lean on us while they
get strong, it is just part of loving them in good times and in bad.
You would do well to understand that not everyone feels that an
amputation is a minor annoyance and not everyone is thirty some thing
years out from having the amputation. It's a process of healing. You
are well ahead of many people who come to this site for help. If you
were perfect in this in the beginning that is wonderful but many like
me are not.
Gabrielle Lincoln <lbkpenguin@yahoo.com>
Jacksonville, FL USA - Tuesday, August 15, 2006 at 18:07:24 (GMT)
Mary Hulser N. Brookfield MA
I am a two year out LBK amputee facing a reconstruction next week. I am
also a care giver for my husband who is a brain tumor patient, so I can
relate from both sides of the coin. And as such I can tell you that
"verbally slapping" your husband is not the answer. He is needing to
express his emotions of what happened to him. If he is projecting those
emotions at you then I would suggest that you try talking with him and
acknowledging his need to express those emotions so both of you can
work on finding ways for him to do so that he is still able to express
it outward but in a different direction then at you.
This is a hard time for both of you, also think about seeking a therapist for yourself and your husband.
My husband was not open to therapy but I go. It helps me to process
things of my own issues with my leg and also with having a healthy way
to help my husband.
Gabrielle Lincoln <lbkpenguin@yahoo.com>
USA - Tuesday, August 15, 2006 at 14:35:49 (GMT)
Mary in Quebec City, Canada...
That old adage, "One day at a time" really applies here. It reads as if
Pat is doing too much. As a diabetic amputee he really has to be
careful as the wounds are slow to heal.
There is a compromise somewhere that allows life to go on without being macho to the point where the stump is damaged.
Sky diving is probably not a good idea...today.
Having a friendly, affectionate wife with a sense of humor is all Pat can ask for.
You are playing out your role PERFECTLY! Keep it up.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, August 15, 2006 at 14:11:23 (GMT)
Hi...It's Mary from Mass.
I wrote to you the other day and I posted on StumpsRUs about slapping my husband.
We are now on vacation in Quebec City with our two teenaged
children and it's difficult. We are trying to make the best of it, but
Pat is having lots of trouble walking, has a cut on his foot, blister
on his stump, wheelchair broke, can't rent a heavy-duty scooter, and QC
is beautiful, but hilly.
It's really not as bad as I'm making it sound. We are happy to be here
and to have him with us as we almost lost him last summer due to septic
shock.
Many things will be dealt with when we get home, but for now, I could use a dose of humor and wise articulation.
Thanks
P.S. The most recent posts--Elaine, Gabrielle are hitting home and giving me lots to think of.
Thanks
Mary <WeRPenguin@aol.com >
Quebec City, Canada - Tuesday, August 15, 2006 at 14:04:17 (GMT)
Gabrielle in some city in some state in some country...
Thank you.
Your "advice" was posted to the Stumps 'R Us on line www.stumps.org GUESTBOOK at 5:59 AM Tuesday August 15th, 2006.
Your help might have carried more weight had you shared a personal
experience with the whining mother who is determined to burden her
daughter with undeserved guilt.
A minor annoyance like amputation is no excuse to destroy the lives of those closest to us.
As adults we should be better than that. We should be role models for our children.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, August 15, 2006 at 13:14:28 (GMT)
Ms Elaine from MD
It's perfectly normal to want to have your independence back, good for
you! But it is also important to "WHINE" when you feel like it.
Cry, be angry etc. If we don't go through the emotions of the loss when
we are going through it then it will come back at us later, either in
physical problems or emotional problems.
Oh, wouldn't life be grand if we all could just laugh at every thing
that happens to us, but guess what we are human, so be human and laugh
when you can and cry when you need to.
Talk with your daughter about your need for independence, I would
venture to guess she will be willing to listen and work with you to get
you where and what you need to be the happiest.
Good luck and know you are in my prayers.
Gabrielle Lincoln <lbkpenguin@yahoo.com>
USA - Tuesday, August 15, 2006 at 12:58:18 (GMT)
Stephen,
What is your last name? What City & state are you in? What country?
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, August 14, 2006 at 00:48:41 (GMT)
Hello Everyone
I will be having a b/k R leg on aug 22..r/t avascular necrosis..i am
doing ok only mini moments of panic..am looking at this with humor..
Stephen <sresolvert@yahoo.com>
USA - Monday, August 14, 2006 at 00:45:20 (GMT)
Elaine from MD...Stop whining and get on with your INDEPENDANT life.
It sounds as if you have an incompetant moron as a Certified
Prosthetist. There is no reason in the world why you are not dancing,
dating, driving or sky diving...if that is what you want to do.
Be more aggressive about a proper, comfortable fitting prosthesis
so you are completely mobile again. Get out of the basement and into
the world.
Driving is no problem for amputees any more. You may need a device that
moves the accelerator so you can use your left leg to use it. They are
relatively inexpensive and are usually installed in less than an hour.
Good luck. When I hear from you again I assume you have emerged from the basement.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, August 11, 2006 at 16:30:33 (GMT)
Hi...
This is my first time using this message board. I am a divorced
63-year-old female R/AK amputee since spring 2005. I had complications
after my surgery and was on a wound vac for most of last summer. In
April of this year, I started my journey with using a prosthesis.
I have had all the usual problems with a prosthesis, mainly getting a proper and comfortable fit.
Prior to this amputation, I was a totally independent person. I
controlled my own life and planned my own day. My daughter sold her old
house (which she loved) to get a bigger house so I could come and live
with her and her family.
One of the problems is that this house is not handicap friendly. It is
3 levels and I live in the basement apartment. I don't get out of the
house as much as I would like and I feel so trapped. I am not
ungrateful for what my daughter has done for me but unless things
change and I am not so isolated, I don't know what will be come of me.
I feel like I am wasting away. I want my independence back so badly. I
am trying to use the prosthesis but it has been difficult for me.
I also want to drive again.
How long does all of this take? Will I ever see the light at the end of the tunnel?
Elaine from Maryland <Lainiebrooks@comcast.net >
MD USA - Friday, August 11, 2006 at 16:19:22 (GMT)
I recently had an accident with some fireworks that resulted in me being a little "short handed" these days.
I lost my left hand right at the wrist. I'm well over it.
It happend 9 weeks ago.
What I want to do is have a little fun with it now. The guy that is building my hand agrees with what I want to do.
I want to find a 5 finger metal hand, quick release, that kinda looks
like the Terminator hand in the movie. The sleeve is going to be air
brushed to look like the inner workings of a robot/cyborg kinda thing.
We are having some trouble finding such a hand.
Any ideas?
Rob Martin <PartsCar@aol.com>
USA - Friday, August 11, 2006 at 01:47:21 (GMT)
Mary Hulser in N. Brookfield, MA...As Dr. Laura would say, "Stumps 'R Us doesn't cure NORMAL".
Your husband being a diabetic amputee does not give him the luxury of
abusing those closest to him. A positive attitude and lots of well
applied humor does a lot to make life easier for all of us...your
husband included.
Should your husband lash out at you or whine constantly you have my permission to "slap him silly" verbally.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, August 10, 2006 at 12:41:04 (GMT)
Hi
I am the wife of a wonderful man who had a BKA about a year ago due
to diabetes. He is now experiencing some diabetic bullae (blisters) on
his other leg that we are trying to heal.This situation brings up the
trauma from last summer.
I am looking for support for myself. I tell my husband that I vary
between wanting to take care of him and wanting to slap him silly.
Can anyone relate?
Mary Hulser <WeRPenguin@aol.com>
N. Brookfield, MA USA - Thursday, August 10, 2006 at 12:15:43 (GMT)
Leah
in Milton, MA...The best thing you can do for your boy friend is to be
cheerful and upbeat when you visit. He will have up days and down days.
That is what we call NORMAL.
When he has questions have him E-mail them directly to DanSorkin@gmail.com I promise to answer immediately.
Once he has completely healed and physical rehab is begun he will
be fitted with a prosthetic device so he can return to a normal life.
Successful rehabilitation is ALL in the attitude. It works for all of us amputees.
Amputation is but a bump in the road of life. I lost my leg in a
motorcycle accident too BUT it was my fault. I was going much too fast
for the road conditions.
That was more than 30 years ago. Today I am an active Instrument Flight
Instructor, teach computer science, run Stumps 'R Us and have been
happily married for 25 years.
Good luck to both of you!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, August 09, 2006 at 02:10:00 (GMT)
Hi!
I'm really hoping you can help me.
28 days ago, my boyfriend was in a motorcycle accident, and had to
have a BK amputation. He is currently still in rehab, and I go visit
him every night, but I know he has questions. Questions that I don't
know the answers to - or even how to make him feel more at peace.
I love him very much and if there is anything that you can give me as
far as advice to help get him through this, it would be greatly
appreciated. I just don't have the right words to say right now, and I
was hoping you have some.
Thank you very much for your time.
Leah.Coughlin <Leah.Coughlin@REEBOK.com >
Milton, WA USA - Wednesday, August 09, 2006 at 01:58:33 (GMT)
Its Been a while since I've seen any humor in here and it is my duty to uphold the mission statement of Stumps 'R Us
"Enjoy Folks"
100 reasons to be disabled
1. Cool toys.
2. Free money.
3. Random guys pick you up and carry you places. 4. Always the last
person to be suspected of anything. (so true...)
5. Never have to wait in line at theme parks or concerts. 6. Priority
housing. 7. Everyone thinks you're sweet and innocent (even if you're
not). 8. No strangers will ever confront you because they're afraid of
hurting your feelings.
9. When you run over people and tell them it's an accident, they
actually believe you. 10. You can get people to do things like cook for
you because you're in the chair. 11. Never have to take the stairs.
12. Hills are great fun if you have a wheelchair! (At least going
downhill.)
13. People always look at you like you're an inspiration. 14. Double
rides on all roller coasters. 15. Some teachers offer to help you out
with notes, and you can show up late for class.
16. Every time you stand up, you can freak strangers out (or get an
ovation from a crowd.) 17. Enormous bathrooms. 18. Shoes are an option
19. It's a great excuse for anything! (It's not my fault, It's my
disability!) 20. You never have to worry about finding a place to sit
21. You end up with mad wheelie skills to impress people with
22. When your drunk, people never suspect, they just think that you
have CP!
23. Time extensions on exams 24. You never have to do anything to get
attention-- people are already staring 25. Never having to walk to
class
26. Being able to "walk" with a use of a joystick
27. ELECTRIC WHEELCHAIRS CROWDS = FEAR 28. Developing a high pain
tolerance is never a bad thing 29. Never having to demonstrate a
problem on the board during math class 30. If you're slow people chalk
it up to your disability instead of pure laziness
31. Burning off every calorie you eat at lunch in one trip to a
non-handicapped accessible building
32. You could go out with a gaping hole in the seat of your pants and
no one would notice
33. No matter what kind of crap you pull no one will ever kick you out
of Bar or Club (hahahahaha)
34. Your wheelchair can double as a shopping cart when you and your
friends go shopping
35. Handicapped Parking 36. An excuse to use the bumpers when bowling
37. Boyfriends or Friends the like giving you lots of hugs, kisses and
sympathy when you fall, which is often
38. If people drop you or make you fall accidentally, they feel so bad
that you could get them to do anything-- the question is will you?
39. No one makes fun of you for tripping and if they say, "walk much?"
you get to say no.
40. People go out of their way to open doors for you
41. Going to college is a HUGE deal, if you go everyone around you is
amazed 42. Parents brag about how "strong" you are
43. You get to kill stereotypes on a daily basis 44. You always have a
lap to hold stuff on 45. People part like the red sea when they see you
coming 46. Being bad at sports is a given so as long as you attempt to
do it people are impressed
47. You have more life experiences than most people you know 48.
Handicapped seating is usually in the front
49. Never having to take classes like gym and shop 50. You can get out
in the middle of class at times
51. You can kick or hit people and claim it was a muscle spasm
52. People give you free drinks at coffee houses because the people at
the counter think you're "sweet" )
53. If you break something by running into it or over it no one makes
you pay for it.
54. You can meet the most awesome people when you have to ask strangers
for help
55. Fuck with the heads of all the people that want to "save the poor
crippled girl"
56. You can have your friends do your hair and makeup for you
57. The media loves you!
58. Everyone knows who you are (actually, a lot of people don't too.)
59. You're never too old for piggyback rides
60. You make a good walker for your injured friends or drunk ones.
61. You can get all excited about stupid stuff and people just think
you're "cute"
62. You never have to act your age if you don't want to because
strangers think you should be immature (i think i might be a bit
insulted by that...)
63. You get to amaze people by actually being able to swim in the pool
64. If you don't have your chair with you many, many people will
scamper and offer you their chair.
65. You can single-handedly be the amusement of all your friends
66. You get some great material for stand up comedy
67. You learn to appreciate the small victories
68. You are easily recognizable in a crowd
69. You are not easily forgotten (especially if run people over)
70. You can hide things next to you in your chair and or shop lift are
they realy going to search your chair. 71. You can swallow pills
without water 72. You are popular (even if it is just 'cuz you're the
"cute handicapped girl"
73. People like to party with you! (There's nothing funnier than a
drunk crip) 74. You can use the word "crip" and not be referring to a
gang member
75. You never have to worry about getting your feet wet
76. You can use those carts with the seats attached at the store and
make everyone wonder what the hell you're doing
77. No one ever questions your excuses
78. Pain killers (paid for by someone else)
79. Biker gloves aren't just for fashion anymore
80. No one questions anything you wear, do, or say
81. Slamming into doors to open them is kinda fun
82. You get praised for doing the simplest things
83. You don't have to worried about people giving you wedges
84. No worries if your pants are too big 85. Falling everyday gives you
the skills to fall without injuring yourself
86. No one messes with you (for fear of being run over by a chair or
impaled with a crutch)
87. You can incorporate your wheelchair into your Halloween costume and
go as a transformer
88. If you drop something someone else will pick it up for you
89. You can in more circles in a smaller amount of time than anyone
else
90. You can invent fun Wheelschair friendly games (make none disabled
person go down a ramp and watch them fall. It hilarious)
91. Braces make it so you don't have to shave as often
92. You can get as many tatoo's as you want on your legs without pain
93. You don't have to worry if shoes a comfortable you don't feel it
any way.
94. You can get into most bars an clubs without paying a cover.
95. Never getting ID at bars and clubs. 96. If your drunk you get just
take a little nap in your chair
97. Great way to pick a cute guy up in a bar is run them over that they
land in your lap. It works everytime.
98. If you don't want to talk to someone you can make them think that
your retarded and they will believe you.
99. You have great stories to tell at parties or gatherings 100. It
just plain rocks and you know you're jealous!
FL USA - Monday, August 07, 2006 at 13:22:30 (GMT)
Cherie Los Angekes, CA USA ~~~~~~~~here are a few
CALIFORNIA
Amputees in Motion San Diego
Chapter N
La Jolla, CA
858-454-9300
Central Valley Amputee Support
Group
Sharon Busser
937 Coffee Road, #1
Modesto, CA 95355
209-825-5538
Functional Amputee Support Team
Charlene McHale
P.O. Box 7373
Orange, CA 92613
714-284-5566
Mutual Amputee Aid Foundation
Harry Pallett
P.O. Box 90261
Los Angeles, CA 90009
877-267-8828
People UnLIMBited-North Bay Area
Tui Wilschinsky
260 Jessie Street
Sebastopol, CA 95472
707-829-8212
Touch of Love (for children)
Maria Foster
543 E. Arrow Hwy. #43
Azusa, CA 91702
800-493-5462
Central CA Amputee Education Group
Liz Zemke
233 E Portland Avenue
Fresno, CA 93720
559-432-6035
559-284-8417
Stumps ‘R Us
Dan Sorkin
2109 Skycrest Drive #1
Walnut Creek, CA 94595
925-952-4408
Amputee Support Group
VA Long Beach Health Care System
Beth Yetzer, EXT 5924
5901 E 7th Street
Long Beach, Ca 90822
562-826-8000
FL USA - Saturday, August 05, 2006 at 21:54:35 (GMT)
Good Afternoon,
My mom recently had all five of her toes on her right foot amputated.
She has had her ups and downs but is still depressed more often than
not. Does anyone know of a support group that she can join in the Los
Angeles area?
Thank you!
Cherie <Cherieam14@msn.com >
Los Angekes, CA USA - Friday, August 04, 2006 at 23:50:30 (GMT)
Does anyone know of any names of Prosthetic Clinics in New Mexico?
Thanks
Mark <LavaMana@aol.com>
NM USA - Wednesday, August 02, 2006 at 20:37:49 (GMT)
Does anyone know of any names of Prosthetic Clinics in New Mexico?
Thanks
Mark <LavaMana@aol.com>
NM USA - Wednesday, August 02, 2006 at 20:36:26 (GMT)
I'm hoping you can assist me with a question I have.
I am living in Australia and will be visiting New Jersey this month for an extended holiday (around a year).
I am an above-knee amputee who has had little luck with prosthetic
leg fittings in my two years of trying. I am hoping to get fitted for a
new leg while in the USA.
I need to withdraw the required funds to pay for the new leg from
my superannuation (retirement) fund, but to do so I am required to
submit a quote of approximate costs to pay for the leg.
I have told my fund that I anticipate the cost to be between
$10,000 and $15,000 depending on the components used however this is
not sufficient and they require something in writing from an 'official'
prosthetist supplier or organization.
My question is, can you advise me on how I can obtain a quotation
for the cost of a new leg? It doesn't have to be something written in
stone as obviously I'll need to organise for consultations once I
arrive in the USA.
Sincerely
Liz Charlesworth <bluemoonllama@yahoo.com.au>
Australia - Wednesday, August 02, 2006 at 20:22:46 (GMT)
Dear
Leigh...Once you are fitted with a comfortable Prosthetic device and
have completed physical therapy, you will find that life goes on with
very little change.
Attitude is EVERYTHING!
If you live in the San Francisco Bay Area I can recommend a fantastic
Certified Prosthetist that specializes in a PERFECTLY fitting socket.
If not...
Your Orthopedic Surgeon should be able to steer you in the right
direction. If he can't, the ACA (Amputee Coalition of America) can.
www.amputee-coalition.org
Please E-mail me your USPS address and I will send our Stumps 'R Us InfoPak. You will love it.
Hang in there. It does get better!
DanSorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, July 28, 2006 at 21:52:54 (GMT)
I
have been reading the guest book and I think I have found the place
from which to get my therapy. I am 37, female, in the hospital, and am
going to have my right foot amputated in three days. I'm scared,
nervous, anxious, okay ... then not okay.
Please talk to me.
Thanks!
Leigh Paschen <leighpaschen@yahoo.com>
USA - Friday, July 28, 2006 at 21:37:37 (GMT)
With Deepest sympathy to a fallen fellow amputee. Rest in Peace.
Carl M. Brashear, 1931-2006 the son of a Kentucky sharecroppers
became the United States Navy's first black master diver in 1970. His
story was brilliantly told in
the 2000 movie MEN OF HONOR starring Cuba Gooding, JR and Robert
DeNiro.
Navy Master Chief Carl Brashear died Tuesday July 25th, 2006 in Portsmouth, Va. He was 75.
FL USA - Thursday, July 27, 2006 at 20:17:22 (GMT)
I am a 38 year old left AK female amputee. I have been an amputee since the age of 3 so most of this is nothing new to me.
I am currently looking into revison of my stump.
Here is my situation, I am 5 feet tall, in good health. I am very
active. I feel that last three prosthesis I have had reduced my
moblility.
(I feel I should have maintained the mobility I had if not gained more moblility)
The reason that I am seeking revision of my stump is that there is a
large amount of loose skin on my residual stump and hip. Which requires
that my prosthesis be made to accomodate the extra mass, (which makes
donning more difficult and i feel it also interferes with my gait) I
must wear plus size pants to accomodate my hip and prosthesis. (My
sound side is fit and toned and If not for the left hip and thigh I
would wear a size 5.
I have not seen a doctor concerning my amputation other then my General Practioner.
Several years ago he referred me to a Plastic surgeon in an attempt to
revise my stump. This plastic surgeon removed only a pocket of skin on
my inner thigh (which has come back to ill fitting prosthesis') stating
that he could not remove anymore then he did due to blood vessels. I
was very disappointed that i went through all of this and it kept me
out of a prosthsis for 8 weeks for no good reason.)
I also have a very long stump which makes fiitting a knee difficult as
well, I currently I have a 4bar knee, which extends far enough beyond
my sound knee that I must sit a bit an angle to drive (It butts into
the dashboard) when sitting I must sit on the edge of a chair to allow
my foot to touch the floor.
(Now this is where the prothtist said "We all have to make
accomadations") I think try accomodating that into everyday life, Movie
theatres, buses, taxi's, my own car... This is not what I consider
enhancing my life.
I have always been active, Swimming, Horsrback riding, Aerobics,
Karate, 4 wheeling, just to name a few. I suppse my question would be,
What should I look for when seeking out a doctor to do the revision
surgery? Should I even consider having the stump shortened?
Mechele <BryteEyez@aol.com>
USA - Wednesday, July 26, 2006 at 13:17:04 (GMT)
Janice
Ragan in Indianapolis, IN...Go back to the Certified Prosthetist that
created your above the knee prosthetic device. He (or she) should be
able to correct your walking so that you don't need two canes.
There is no reason why you can't drive a car either. You may need a
simple device that moves the accelerator to accomodate your good leg.
Your prosthetist should be able to point you in the right direction in
Indianapolis to accomplish this simple installation.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, July 23, 2006 at 01:49:45 (GMT)
I
am a left leg above the knee female 58 yrs old. I need help with my new
prosthetic leg. I can't walk with it without using my canes.
I need someone to show me how to walk.
I can walk around in my house but not out side. I live in indianapolis and I really need help.
I hate staying inside all the time, and now i can't drive so that makes it harder. So please help me.
Summer is just about over and i would love to do something.
Janice Ragan <jragan316820@sbcglobal.net>
Indianapolis, IN USA - Sunday, July 23, 2006 at 01:42:34 (GMT)
Dave...You have a lot of stuff going on.
Is the socket comfortable and stable? The rotator Otto Bock has is pretty good, and has an adjustment on the bottom.
Is this set for the least resistance? The rotator should move the same amount in each direction.
The foot should be flat on the ground.This would be an alignment problem. Why did you let them put it together like that?
Go back to your prosthetist and ask him to fix this.I would guess that
if your leg is long enough that one knee sticks out, there is not a lot
of room on the end for substitute products.
I do not know how tall you are. Do you use mode 2 set for golf ? It is
always nice to have a foot with a nice soft heel and a spring for a
toe. I will bet you don't see much movement at the foot when you press
down on the heel maybe like a 2X4.
Your Certified Prosthetist can easily fix this!
C.P. Wayne Koniuk <limbart@sbcglobal.net>
San Francisco, CA USA - Saturday, July 22, 2006 at 10:26:41 (GMT)
I
am a right leg above knee amputee who is an avid golfer. Currently I
have a C-leg with the ossur seal in suction liner and the luxon foot.
There is a rotator on the leg but it moves a limited amount towards the
the rear and practically nothing forward. Also I find that when the
ground is level there is nothing that keeps the foot level. The toe of
the shoe could be off the ground.
With that background I was wondering if the Total Shock is a solution to my problem.
That is I can get sufficient rotation out of my amputee side hip in
both directions and the vertical compression might help push down my
foot. In normal walking it does not twist all over the place. I have a
long stump and my knee sits low compared to my normal one.
Also it appears if I decided to switch feet (which Ottobock
discourages) would the ceterus foot work with the C Leg and its weight
sensors?
Any Recomendations?
Dave Lovullo <dlovull1@rochester.rr.com>
Rochester, NY USA - Friday, July 21, 2006 at 13:50:23 (GMT)
You are invited To Take A Carnival Cruise With A Group Of Amputees!
The CRUISE Will be porting out of Tampa on 10/23/2006. It will be a
5 day western Caribbean cruise on the Inspiration Ship thru Carnival
cruise lines.
The ports of call inclue Tampa/ Grand Camen Islands/ Cozumel/ Tampa
http://www.carnival.com/ or Contact Sergio @ (800)819-3902 Ext 48415
Keep in mind it was to difficult to orginize a group with deposits
and proper head count so if you want to go the booking is up to you.
You may reference me, Joseph Kennedy, to insure that you schedule
the right cruiseline and proper date. I sincerely hope you can make it.
Message me back or call if you have any questions
Tampa, FL USA - Thursday, July 20, 2006 at 04:58:47 (GMT)
Hi,
I'm doing some research for my girlfriend who is helping disabled
kids in India. One child has no arms, and she is trying to find a way
to teach him to type. I was wondering if you had any techniques or know
of who I can talk to about different ways of teaching her student to
type.
They can not order any unique devices or keyboards because it is a poor group. Any advice would be most helpful.
Thanks for your time
Lee Orrison <lgorrison@gmail.com>
USA - Monday, July 17, 2006 at 13:05:33 (GMT)
Gary Graham...You certainly qualify as an amputee in my book.
There are lots of things you can do to relieve the phantom pain OTHER
than narcotics. I use self hypnosis...easy to learn. You can also use a
very snug glove that places pressure on the tips. Your Certified
Prosthetist should be able to help with that.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, July 17, 2006 at 13:01:02 (GMT)
I
lost 4 fingers on my left hand on July 7th, and so far have found that
other amputees, hardly even consider me as an amputee, and rarely offer
any support.
little finger - Proximal Inter-phalangeal joint amputation
ring finger - Proximal Inter-phalangeal joint amputation
middle finger - Distal Inter-phalangeal joint amputation
index finger - Distal Inter-phalangeal joint amputation
here are my issues..
little finger -
problems with the nerve endings along the whole residual finger
(bottom only). the "stump" can be moved and can take presure at the
end, but any grasping actions causes the nerves to fire.
ring finger -
major problems with the nerves.. the finger was a real mess, so
when it was sewn up there was a gap of about 2mm where the skin was
not closed despite tight sutures. in this gap is where one of the
nerve endings ended up, so it's attached (adhesion) right to the
scar tissue. I cannot take any pressure to the bottom of residual
finger (just like the little finger). another problem is I cannot
move the "stump" more than a few mm, not due to pain, it just cannot
move back or forth, as if the muscles were not attached.
middle finger -
problems with the nerve endings being to close to the stump, plus
little to no padding for the bone. very very difficult to move the
Proximal joint. takes several minutes to get it to move at all, and
when I can move it, it's largly not in a functional fashion. bending
the joint tends to fire the nerve endings.
index finger -
problems with the nerve endings being to close to the stump, plus
little to no padding for the bone. very very difficult to near
impossible to move the Proximal joint. it's largly not functional
and as such I cannot use the full length of the "stump". bending the
jo int tends to fire the nerve endings.
just to make it clear. In addition to the above I also have phantom
pains, which feels nothing like the nerve endings..
currently (due to the above) I have little use of the hand.
I checked on finger prosthetics so I could regain some use of my
hand, but after an $8000 to $17,875 quote range (I also talked to the
makers of X-Fingers) but because I have no insurance I have no ability
to regain much functional use of my hand without prosthetics, so right
now I just wear gloves.
questions....
has anyone delt with this?
is it normal?
will it go away, or is surgical intervention required?
note: I saw the DR today, and he was of no help at all, just filed
it under phantom pains.
opinions, thoughts??????
Gary Graham <burned@centurytel.net>
WI USA - Monday, July 17, 2006 at 12:56:24 (GMT)
Karen...My friend Dan Sorkin of SRU forwarded me your below request.
I will assume that your friend is not a US citizen and does not qualify for Medicaid funding.
Unfortunately we can only provide donated prosthetic components to
licensed or certified prosthetists (prosthetists aren't required to
have either in New Jersey), who will sponsor amputees who have no
funding.
If he (the prosthetist) was to request an application from us we
may be able to provide a donated Mauch unit (if we have one) for him to
install for a tax deductible donation to the Barr Foundation.
No warranty or representations on the unit will be made.
Anthony T. Barr
President
Barr Foundation
www.oandp.com/barr
www.ErtlReconstruction.com
Tony Barr, President The Barr Foundation <t-barr@t-barr.com>
Boca Raton, FL USA - Wednesday, July 12, 2006 at 00:32:58 (GMT)
Hi,
My name is Karen from Hackensack, NJ. My good friend and business
partner, Ahmed has been a right leg AK amputee for about 23 years.
Unfortunately, he has not had insurance or financial resources to
replace his prosthesis for a number of years and has been making it
functional on his own for some time.
The leg recently failed and is not usable without a new mauch unit. I
was wondering if there were any known ways to find people selling or
giving away used prosthesis or their components. We found a few people
selling on eBay but nothing has worked out so far.
Thanks for any help.
Sincerely
Karen <kjwimmer@netzero.net>
Hackensack, NJ USA - Tuesday, July 11, 2006 at 20:23:16 (GMT)
Hello! It me again, Lilie and I know it has been awhile since my last email.
I found out today that I have to have a LBK amputation. I have been fighting with my heel for three and a half months.
I lost the battle once again.
I became a RBK just last year in June of 2005. I am scared and have
many questions with no answers. I need to speak with people who know
what I am going through so I came here.
My email address is LRoonikins@aol.com and when you email me feel good
about talking on the phone. Please feel free to let me know.
I live in the San Francisco South Bay and I really don't have much of a
support group. I can use all the support and friends I can get.
I hope I will be hearing from some of you soon and hopefully talking on the phone and maybe even someday meeting each other.
Unless you have gone through it you really don't understand. I am in
great need of amputee friends. If and when you email please put the
words "Fellow Amputee From Stumps R Us" that way I won't delete it
because of a new address.
Thanks and I hope to hear from someone soon.
Lilie <LRoonikins@aol.com>
SFO South Bay, CA USA - Saturday, July 08, 2006 at 14:23:27 (GMT)
Dear Lynn...I felt the same way initially.
I felt that the whole world would look at me as disfigured, ugly,
sexually unattractive. I decided that I didn't want to live in fear of
what other people thought of me. I took a deep breath and asked a girl
out on a date, stating up front that I was an amputee.
I was stunned by the response.
She was intensely interested in what amputation was like and could
she help in some way. A year or so later after dating a lot I married
another woman.
To my surprise & delight I was not looked upon as some kind of side
show freak. I was a man with an interesting story to tell.
Jody & I have been married for 25 years. I find that today I
am a better, more caring, compassionate person BECAUSE of the
amputation. I founded Stumps 'R Us to pass on that insight.
Take a deep breath and get back into the dating game. If you do
find a "man" that is repelled by your accident, be assured you have
just eliminated a loser. He would have been a loser whether you had a
leg or not.
Eventually you will find someone that will equal your own high standard.
Good hunting!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, July 08, 2006 at 13:16:05 (GMT)
In reply to Joe Kennedy’s question about amputees in the Military, I would like to raise a few points.
First of all, it is not automatic that amputees get to stay on
active duty. It is done on a case by case basis that requires a waiver
to stay in.
A lot of people don't get to.
In most cases, the people that do stay go to training jobs or support
jobs, not combat positions that unfortunately still remained closed to
most amputees. The people that stay in have already “paid their dues”
so to speak in the operations side and can continue their career
training others. The service has also already invested a lot of money
training the individuals, so they are getting something in return. The
military is not going to take someone in right off the bat that cannot
fill a deployable billet. It would not be fair to others who have to go
in their place.
In the case of the Air Force pilot, his name is Andrew Lourake,
and he is a Lt. Col, not a Lt. He was an instructor/ evaluator C-5B
Galaxy pilot before his dirt bike accident, and now flies C-20B
Gulfstreams out of Andrews AFB not Air Force one. It took him six years
of paperwork to get back in the pilot seat, and he will never fly what
is known in the Air Force as a major weapon system again. Its another
case of him already being trained and already given years of service.
They would never let him fly an ejection seat aircraft such as a T-38
that he had to in Air Force Pilot training. As a side note, he and his
wife are peer visitors and a great source of inspiration to new
amputees at Walter Reed and Bethesda hospitals in the D.C. area. I have
the honor of having gotten to know them during my nearly year long stay
out there.
In my case I was a C-17 loadmaster with 19 years and over 6000
flying hours when I was run over by an errant teenaged driver. I had a
left hip disarticulation, and there was no way I could ever perform my
job safely again, prosthetic or not, nor would they spend the money to
retrain a retirement aged NCO.
People get turned down for service for many reasons far less severe
than amputations. It usually comes down to having to draw a line
somewhere that makes sense both finacially and for the saftey of
others.
It may not seem fair, but it is logical in my view.
Ed Donnelly, MSgt USAF (ret) <itsed65@yahoo.com>
Point Richmond, CA USA - Friday, July 07, 2006 at 19:43:51 (GMT)
Lisa
Murray...It sounds as if your socket needs adjustment. Your Certified
Prosthetist should be able to offer immediate relief with a minor
change in socket size.
It should be as simple as that.
Please let me know if this was helpful
Good luck!
Certified Prosthetist Wayne Koniuk <limbart@sbcglobal.net>
San Francisco, CA USA - Friday, July 07, 2006 at 12:03:16 (GMT)
This is a copy of what I wrote in my own Online Group and was curious as to what kind of feed back I would get from this Group
Here is the question of the year.
I have been involving this topic and myself with the US Congress in
my efforts to return to the Military. The Military has issues that
concern me about amputees and the military . I don't really know
specifics but I know there haves been a few amputees that returned to
active duty that were in the military at the time of their amputation.
If you lose your leg or arm while in the military you have the option
of staying in however, if you get out or have never been in being a
amputee is a automatic disqualification.
I feel that that is a double standard with a double-edged sword.
There is a Lt. Andrew Lureg, an above knee amputee who pilots air force
one and other aircraft that carry the President and other top
dignitaries. He lost his leg to a ATV Accident NOT Combat related but
was still in the military.
To me that makes no sense whatsoever whether you lost your leg while in
or out of the military should have no bearing on whether you can
perform the job minus a leg.
Can anyone explain the logic behind this policy if you can pass the
same battery of tests I don't see why it should make any difference -
in fact I would think that it borders on being discriminatory. You can
be an amputee in the military. You simply can't join if you are on!
Where is the logic?
FL USA - Wednesday, July 05, 2006 at 14:13:42 (GMT)
Lisa...Biofine
is a prescription lotion used for radiodermititus and 2nd & 3rd
degree burn patients. You should probably see your doctor (I would
think), but the lotion may help with the pain from the burns, and
assist that the tissue recover properly.
Joseph Feigon <jfeigon@urizel.com>
San Francisco, CA USA - Wednesday, July 05, 2006 at 02:43:35 (GMT)
Hi Lisa...I saw your post on the Stumps 'R Us message board and thought I'd get in touch.
My name is Keiron McCammon, I lost my left hand due to electrical burns
after a sports accident back in Feb. Whilst I'm just starting the
process of getting my first prosthetic I thought I might offer some
suggestions since I also had an open area at the end of my stump and on
the grafts on each of my legs.
I used Bacitracin Zinc Ointment as an antibiotic to keep infection at bay but also used Regranex (becaplermin) Gel:
http://www.regranex.com/home.jhtml?mi=1&_requestid=2354711
This gel was used quite extensively whilst I was undergoing
treatment in Miami after my accident to promote granulation of the
remaining tissue on my arm and leg...and it certainly seemed to work
well for me. I did have the luxury that I could give it time to heal
and I would imagine wharever you try, giving the area time to heal
without a prosthetic will be key.
I've also been using Mederma on my scars and skin grafts:
http://www.mederma.com.
This is a silicone gel that has helped soften my scares
considerably. It supposedly works even a long time after the scars have
healed. I have a twice daily ritual of using vitamin E oil, a coco
butter based topical body & hand lotion and Mederma. I then also
have Jobst compression garments that I wear. All this seems to be
working well for me.
Hope this helps and good luck.
Cheers
Keiron McCammon <kmccammon@gmail.com>
Danville, CA USA - Tuesday, July 04, 2006 at 23:46:59 (GMT)
Hi Dennis...I just saw your post on the Stumps 'R Us guestbook and thought I'd pass along the following link:
http://www.oandp.com/products/trs/sports-recreation/canoeing.asp
I've been doing research into prosthetics after losing my left hand below the elbow back in February.
TRS seem to have some good solutions for different sports.
Cheers
Keiron McCammon <kmccammon@gmail.com>
USA - Tuesday, July 04, 2006 at 23:03:08 (GMT)
Lisa
Murray...Unfortunately it is times like these that you need to pull
your stump out of the Prosthesis to let the wound heal completely.
There is a topical very strong antibiotic called bactraban or
muproxin 2%. It is excellent for speed healing if in the worst case
scenario you absolutely have to protect that area from friction.
Your Certified Prosthetist should have a item called 2nd skin.
it is a moistened lubricated pad to help cushion the blow.
If it starts to spread or gets larger see a Dermatologist ASAP.
Good luck!
FL USA - Tuesday, July 04, 2006 at 13:39:14 (GMT)
Hello,
A tractor trailer driver fell asleep at the wheel and unfortunately hit my car and my gas tank exploded.
I lost the right BKA due to 4th degree burns and osteomyelitis, so
being an amputee is challenging but buying or getting a prosthesis
comfortably on burnt skin, is a real challenge.
I have gotten a small open area at the distal end of the stump and cannot heal this. The pain is intense at times.
Any suggestions?
Please do not suggest to take it off and let it heal. I am a single mom
of three grade school kids. I have been an amputee for 16+ years and I
am a nurse. I have been using cortaid around the open area due to
itching and I cleanse the site with normal saline and triple antibiotic
cream but the pain issue...I need something topical to help the area.
Please any suggestions?
Lisa Murray <lisamurry1@verizon.net>
USA - Tuesday, July 04, 2006 at 03:35:12 (GMT)
Amy,
I read your post on the bulletin board online.
I also live in the Phoenix area and have been very
pleased with the physical therapist at Baptist Hospital.
Her name is Sharon Hayden and her specialty is amputees.
The phone number is 602-246-5766.
Good Luck!
Janice Hoenscheidt <butterfly123@cox.net>
Phoenix, AZ USA - Wednesday, June 28, 2006 at 12:56:00 (GMT)
Amy
Raimondi in Phoenix, AZ....The injections help that is if you are
refering the lumbar sympathetic nerve blocks what the injections do
from my recolection is trick the severed nerves at the amp site into
thinking that the leg/arm is still there therfore the impulses are much
slowered and calm and will regrow under Calm conditions i have a series
of 8 2'x a week foe 4 weeks every two years People may think its hokie
but I get phantom pain and sensation maybe 5-10 minutes once a month I
can deal with that None the less don't quote me on anything here but
definately bring it up to your Doctor.
FL USA - Sunday, June 25, 2006 at 22:28:28 (GMT)
Amy
Raimondi in Phoenix, AZ....For an Amputee Physical Therapist in Phoenix
contact the Amputee Coalition of America www.amputee-coalition.org/ for
assistance.
About the Phantom Pain...I would suggest a revision surgery performed
by an ERTL trained Orthopedic surgeon. The ERTL Procedure buries the
nerves, ligaments, etc, in the soft tissue protecting them from further
trauma.
A listing of ERTL trained surgeons in the United States can be found by
searching the ERTL information on page one of this web site.
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Sunday, June 25, 2006 at 14:32:58 (GMT)
I
am hoping someone can help me! I am recently engaged to an amazing man
who is an above the knee amputee. The procedure was done 2 years ago,
however he still experiences a great deal of pain in the stump. He has
tried all of the pain medication the doctor has given him (morphine,
Perkiset (SP?), but nothing seems to help. We have looked into botox
injections and have a consultation for that next week, but I am
wondering if anyone out there has any suggestions.
Also, he would like to work with a trainer to rebuild some of the
muscle strength he has lost, but can't find anyone in our area who has
experience with amputees. We live in the phoenix area. If anyone has
the name of someone with experience I would be so grateful to hear from
you. Thank you for your time and help.
Amy Raimondi <watchbuggies@hotmail.com>
Phoenix, AZ USA - Sunday, June 25, 2006 at 14:21:15 (GMT)
Terry
Brandeberry...Silipos has what you need. It is a Gel lined elastic
finger tube. It will sew up the end and also protect against
sensitivity.
Certified Prosthetist Wayne Koniuk <limbart@sbcglobal.net>
San Francisco, CA USA - Friday, June 16, 2006 at 03:53:39 (GMT)
I feel kind of silly asking questions as my amputation is hardly of the magnitude that many of you readers are relating.
November 2005 started me on my path to having my left middle finger
amputated at the distal phalange. My 8 year old OCD/ADHD son was in the
wood shop with me where I was ripping boards to put a new floor in the
stock trailer. Something happened outside the shop door and my son who
is also tactilely challenged went running through the shop waving his
arms. I had no chance. One of his waving arms hit my left arm putting
my left hand into the table saw blade.
Fortunately, my ring finger healed perfectly and my index finger while
shortened the width of a saw blade healed up just fine, too but my
middle finger was a different story. After months of antibiotics to
treat resistant staph and e coli infections I finally gave up in the
face of Chronic Osteomylitis. Surgery was 5/3/06.
I can say that even the loss of that first joint has totally
changed the way and I do things and think about things. Grip strength
and reach has diminished, not always a good thing when trying to grab
the halter rope of a calf that I am trying to halter break for the kids
to show for 4-H. Probably the greatest loss for me is musically. Piano
and the keyboards are not such a hardship but guitar and the other
stringed instruments that I played I now have to learn to play in
reverse. Theoretically it should be easier to do fretwork because my
right hand is my dominate hand but I am having a difficult time coming
up with chord charts to get me started.
OK enough of that.
I have been having continued swelling at the distal end a burning
sensation that is pretty constant. Someone suggested that compression
bandages might be helpful. Someone else told me to keep it in a splint
because the swelling might be due to the fact that I am pretty rough on
my hands when working on the farm. Someone else suggested using the
rubber fingertips people use when sorting papers. I have tried some of
those but they are all too tight and make the burning worse.
Eventually, I would like to have a prosthetic finger made to regain
the lost length for playing keyboards but since we do not have
insurance it won’t be for some time.
Do you have any suggestions for how to proceed?
Terry Brandeberry <tdbrandeberry@gmail.com>
Siloam Springs, AR USA - Thursday, June 15, 2006 at 21:32:08 (GMT)
If
it were me I would opt for an ERTL Amputation below the knee. Page one
of the web site has links and information about the ERTL procedure and
the doctors qualified to practice the procedure. The ERTL surgery
creates a bone bridge connecting the remaining bones at the tip of the
amputation and buries the nerves, ligaments and other residual parts in
soft tissue all but eliminating neuromas and phantom pain.
We have several members of Stumps 'R Us who have had the procedure done with amazing, positive results.
Dan Sorkin <DanSorkin@comcast.net>
San Francisco, CA USA - Thursday, June 15, 2006 at 02:55:04 (GMT)
As I have experienced some complications with a 26 year old stump, I am looking for some help in making some treatment choices.
I have been surfing the web, and discovered your site.
Here is some of my background, and if there is someone that can
help, I would appreciate the help. I will try to be brief, but still
provide some background.
September 24, 1980 was the date I lost my left foot in a grain
auger, at age 30. I have lived with a Symes Amputation from that time
forward.
I'm 56 years old now.
Currently I am experiencing some degradation of my stump pad
(distal end).
(In a Symes, it had formerly been the heel tissue.) An area that had
always been a thick callous and scar tissue blend has cracked open, and
is causing severe discomfort. The initial opening and seeping started
in March '05, and gradually healed up by October '05. However the
callous and crack was continually present, and then reopened in
February of '06.
The opening/crack has evolved to become very tender, and am at a
point where the pain is not very tolerable. The skin surrounding the
open crack seems to continue to deteriorate as well.
I have a very supportive orthopeadic surgeon, but his suggestion is
to "chop off" the stump and start over. The prosthetist I visit
advocates a new silicone lined prosthesis, and believes my stump will
heal due to a better fitting socket. (I've lost 30 pounds in the last
18 months by dieting and exercise so my old prosthesis has become less
of a fit.)
Basic question and request would be----are there any professionals that have worked with similar situations/cases?
Almost everything I read or have connection with are about more
recent amputees and their challenges. I would think that if there are
some veterans of earlier experiences that can give me some insight, it
would be very beneficial.
Please call or email and possibly we can discuss.
Thanks!
Dave Paschold
1687 Woodsview Street
Lincoln, NE 68502-4650
402-423-0308 office
402-239-6947 cellular
dlpaschold@agriliance.com
Dave Paschold <DLPaschold@agriliance.com>
Lincoln, NE USA - Thursday, June 15, 2006 at 02:45:35 (GMT)
I would like to post to the Stumps R Us GUESTBOOK the following question:
My 15 month old daughter was born missing her right arm from the
elbow down. She is currently using a passive prosthetic and is doing
wonderfully. Unfortunately, our prosthetist is moving out of state.
Does anyone have any recommendations for a prosthetist on the SF
peninsula? We live in Belmont, so we are preferably looking for someone
between Sunnyvale and South San Francisco who has experience in
pediatric upper extremity prosthetics.
Thank you for all of your help!
Andrea Canavero <gcanavero@yahoo.com>
Belmont, CA USA - Tuesday, June 13, 2006 at 17:00:20 (GMT)
Hi there!
I'm a former motorcycle racer who got to enjoy my RAE in September
of 2005 when I was pushed off the track into a steel guardrail. Anyhow,
it's time to get more active again, and in addition to adapting my
motorcycles I'm looking at taking up kayaking.
While my prosthetist is helpful he's not the most imaginative, and I'm having trouble figuring out how to hold a kayak paddle!
Any suggestions on how to get this paddle to work would be a big help.
Thanks in advance
Dennis C. Blue <bluedogz@comcast.net>
USA - Sunday, June 11, 2006 at 04:30:38 (GMT)
Hi
Tanya McCabe...I am a LBKA (May 03) and also wear the Harmony Vass
system. I wear a nylon sock under my liner to absorb moisture and it
works very well. The sock will not interfere with your skin in any way,
and you will still get good suction.
I live in Arizona where the temp's right now are over 100. It is very
important for me to be able to wear the prostethic from morning to
night.
I also play golf, and usually don't have any 'water' problems before I finish.
If you have any questions you can e-mail me directly. Good luck to you.
Gene Robison <hgrobi@yahoo.com>
Sun City West, AZ USA - Friday, June 09, 2006 at 23:02:00 (GMT)
Thanks for your antiperspirant help, Wayne and Joe! I really appreciate it. My prosthetist has ordered it for me.
Have a great day!
Tanya McCabe <dangergirltm@hotmail.com>
USA - Thursday, June 08, 2006 at 22:02:43 (GMT)
Tanya
McCabe...Please ask your prosthetist to order some from ALPS. They have
specifically formulated one for amputees. I have given this to many
people and it is successful about 80% of the time. The prosthetist
should know ALPS.
Certified Prosthetist Wayne Koniuk <limbart@sbcglobal.net>
San Francisco, CA USA - Thursday, June 08, 2006 at 13:26:49 (GMT)
Hi,
My mother lost her left arm several years back due to a car accident.
She also suffers from a balance problem due to an earlier stroke.
Needless to say, when she walks she has trouble staying upright.
I have seen a walker called hemi-walker for one handed folks. Does
anyone have any experience with these kinds of walkers? Are they any
good? Can you suggest something better?
Thanks is advance for your help.
Patricia Canada <pcanada@sbcglobal.net>
Fremont, CA USA - Tuesday, June 06, 2006 at 19:43:53 (GMT)
Tanya
McCabe Portland, OR USA ~~~~~~~~Your Prosthetist should be able to
order this for you thru ALPS ATP-008. It is an Antiperspirant Spray
with aluminum Chloride. Or you can ask your doctor to write a Rx for
Aluminum Chloride and Dilute it with a little water in a dollar store
spray bottle.....
Hope this helps Joe
FL USA - Tuesday, June 06, 2006 at 19:20:46 (GMT)
Hello,
all. I'm a BKA who is fortunate to have a vacuum-system prosthesis
which I got last fall (amputation was 3 years ago - end result of an
old skydiving accident).
I love the system.
However, now that it's getting warmer, I can only walk a few blocks
before I have to stop, take my leg and liners off, pour off the water
and sop up my leg & liner with a towel.
Annoying.
I asked my prosthetist if I could wear a sock of some sort between
my leg and the inner liner, but it seems that the suction system is so
efficient that the fabric would become slightly embedded in my skin and
that it's a solution for only short periods of time.
My prosthetist recommends that I find an antiperspirant spray without deodorant or aluminum. Does anyone
have any recommendations? I'd like to hear how the rest of you deal with this problem.
Thanks!
Tanya McCabe <dangergirltm@hotmail.com>
Portland, OR USA - Tuesday, June 06, 2006 at 02:07:02 (GMT)
scott --- i guess that's your name as you didn't sign your post.
tie shoes can be a challenge, a challenge i avoid since I don't have any hands either.
in my running shoes i just tie the laces in knots and cut the extra
laces and slip them on like loafers. usually the laces are nylon so a
pass thru a flame seals the nylon forever. a drop of super glue will
help hold the knot.
loafers are the best. being a beach / boat guy sperry topsiders are perfect.
elastic laces are available which help converting tie shoes to loafers.
to better secure the knots have someone show you a simple 'surgeons knot.'
socks none, if its very cold, the white ankle hi sports socks work well. use which works best for you.......
good luck
Mike Penketh <PittsS1@aol.com>
Vacaville, CA USA - Wednesday, May 31, 2006 at 21:38:20 (GMT)
I
had posted in December 2005 when I realized I had had an amputation
only mine was at the top of my leg -- total hip replacement. The second
was replaced 4 April 2006.
I had not walked unaided in 10 years. Much of this time was in a wheelchair.
I was unprepared for the first surgery and spent 5 1/2 days in the hospital and 7 days in rehab.
<
I started working HARD in the gym and pool and continued to lose
weight. For the second hip I was in the hospital less than 96 hours.
Within three weeks of being cleared for weight-bearing I am walking
without even a cane.
I continue to spend 2 hours in the gym and pool (most recently 1,000 yard freestyle in 26 minutes).
I had huge osteophytes (bone spurs) around the hip joint and my surgeon
sent me for one radiation treatment on the second post-op day after
each hip.
We all need to share our experiences as there is a wealth of knowledge and wisdom amongst us.
<>
Dr. J. Curtis Kovacs, Stumps 'R Us Life Member <KOVACS2@COX.NET>
Sun City, AZ USA - Tuesday, May 30, 2006 at 02:16:42 (GMT)
I'm very happy for you, Lorraine!
<
An awesome Christmas gift!
I had quite severe nerve and muscle pain 24/7,
especially in my "foot". The Lyrica has quieted the pain at least 50%.
I have taken MANY medications over the years, pre-amputation and
post-amputation, and all of them have had side effects that I wasn't
willing to put up with. I wasn't taking any pain medication before I
started the Lyrica, and I was miserable.
I have virtually no side effects with the Lyrica. I was taking the
highest dose possible for a few months, but I've had a revision surgery
which has helped a great deal, and now I've cut back on the Lyrica.
When I was on the highest dose, I did experience a bit of lightheadedness and constipation, but it was quite minor.
I hope anyone out there who has given up on finding some relief for
nerve pain -- phantom pain -- will give Lyrica a try. I tried many
nerve drugs and narcotics prior to the Lyrica, and none of them helped
me like the Lyrica has.
Good luck!
<>
Suzanne Duda <SuzanneDuda@comcast.net>
Lansing, MI USA - Monday, May 29, 2006 at 12:40:48 (GMT)
Hi Dan
Last visit to our family doctor he told me about a new medication, Lyrica, a Diabetic Neuropathy aid.
He asked if I would try it and gave me a sample.
You take it two times a day. It doesn't take effect for a week.
I let you know years ago that I had a bad surgery that left me with
some problems that prevented me from walking any distance . Lots of
pain.
This medication has worked like a small miracle taking away the pain
caused by the loose flesh at the bottom of the stump. There is no cure
for the pressure on the tibia that was left without any protection nor
the bones on the right of my leg that also get pressure.
I believe a trip back to my prosthetist will take care of that and I will be able to get around for a longer time than before.
This new medication has done miracles for me-- I am actually able to
stand at the stove and prepare a meal without extreme pain that caused
me before to have to sit and remove the prosthesis altogether.
I am able to get around with my cane instead of the wheelchair and I
have been walking down our hall without using the cane. So you can
imagine how thrilled I am to have found something to allow me to do
these things.
I am sending this message directly to you because I know you scan
your incoming mail. This stuff may not work for others who experience
the kind of pain it is meant to relieve.
The only side effect, so I was told, might be nausea. I experienced nothing but good things.
God Bless you and the good work you do.
Lorraine Skiles <lorskile@fidnet.com>
Union MO, USA - Sunday, May 28, 2006 at 02:34:09 (GMT)
I
have an online group as well on MYSPACE for anyone who would like to
join. As moderator of the group I ensure that the people and or persons
joining are in fact an amputee, friend/family of or practitioner.
The forum is open much like the stumps R Us GUESTBOOK. The people there are genuine to my knowledge.
The group is marked as private because of the group's content and
sensitivity. As most of you know there are several folks out there
trying to take advantage of persons with disabilities either pretending
to be one or wishing they were.
As a courtesy please post a little about yourself as to your
interest to the group once you join in the profiles section or in your
own profile. The reason I ask is to protect the integrity of the group
by scanning each new member.
Hope you have a great Day.
http://groups.myspace.com/gimpie72
FL USA - Thursday, May 25, 2006 at 17:13:42 (GMT)
In
my own amputee support group I am trying to get a cruise for amps. I
just got off the phone with the cruise lines in regards to schedule an
amputee group cruise to the Bahamas departing from Cape Canaveral in
Florida.
It would be the weekend of the 26th of August. In order to get an idea
of cost I would need to know how many people might be intrested in
going.
Right now the cost is between $290-490 depending on the room and when i can book it.
i need an approximate head count before I can go any further.
Please let me know either way and once i get an idea I will finalize something by June 1st
FL USA - Monday, May 22, 2006 at 23:03:21 (GMT)
Hi,
I do Occupational Therapy. I know all the text book ideas for transfers
etc. in relation to amputees, but I need some "real life" ideas.
I am working with a double amputee that would like to go home again
(currently in a care center). The patient has a prosthesis on the Left
leg only.
We need some additional cues to increase the ease with toileting &
pericare & dressing lower body with toileting. The patient
occasionally has a catheter as well so keep that in mind with
transfers.
Any addititional ideas would help.
Tara Smith <TaSmith@VOA.org>
Dakota County, MN USA - Monday, May 22, 2006 at 21:19:57 (GMT)
I
have written to you before, my name is Liliette (Lilie). I am an R/BK
amputee due to diabetes. My husband Roger is my full time care giver
and it is taking it's toll on him.
Right now I can not use my leg because there is an open wound on my
good heel. And I need to have the leg refitted and can't do so because
I can't have pressure on my good foot.
Roger has no one that can relate or understand what he is going
through as a care giver. I feel for him but don't know what to do
because of my own day to day struggles. I only get out for doctor
appointments and feel trapped in the studio apartment that we share.
We have been married of a little over two years now and this adjusting
has really worn both of us down., We are both in our mid forties and it
seems as life as we knew it is put on hold.
I feel that my husband needs support just as much as I do, He needs
someone to talk to that can understand and relate to what he is going
through. And to someone who can give him advice when needed, He feels
like he has had to give up a big part of his life because of what has
happened to me.
If you can help please let me know, Feel free to call me at 408 744-0850 or email me.
Thank you!
Lilie <LRoonikins@aol.com>
USA - Friday, May 19, 2006 at 14:45:45 (GMT)
Leslie...There is no reason why your husband cannot become a Commercial Pilot.
The first step (pardon the pun) is to secure his Private Pilot
Certificate by enrolling in one of the many Part 141 flight training
academies in the United States AFTER getting a prosthesis fitted that
will allow him to successfully operate the rudders and brakes in any
aircraft.
His prosthetist can help with that. For flying I use a Peg Leg because
it is easier to put positive pressure on the brakes and rudder pedals
with it. I use a standard B/K prosthesis with a Freedom Innovations
Renegade Foot for walking and switch to the peg for flying.
As a CFII (Certified Instrument Flight Instructor) I have zero
problems flying commercially or instructing. I have what is called a
SODA (Statement Of Demonstrated Ability) from the local Oakland,
California FSDO (Flight Standards District Office). I earned it by
demonstrating to an FAA Inspector that I can fly with an artificial
limb.
No problem!
If you have any other questions please feel free to ask them.
Good luck!
When once you have tasted flight,
you will always walk the earth with
your eyes turned skyward. For there
you have been and there you will
always be!
...leonardo da vinci 1452-1519
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Friday, May 19, 2006 at 03:11:36 (GMT)
Dan...I just read your article and found it to be very encouraging.
My husband recently lost his right foot in a motorcycle accident.
He was in pilot school prior to the accident. His long time dream was
to become a airline pilot. He wanted to do that by joining the Air
Force reserves. Well, that is out of the question now, since his
accident. But now he is depressed and feels as if he can not become a
pilot because of this injury.
I see that in your story you became a pilot. Is it possible for him to still become an airline pilot?
Leslie <LeCald1122@aol.com >
USA - Friday, May 19, 2006 at 03:09:07 (GMT)
Dear
Dan and Stumps GUESTBOOK readers...I would like to send out a HUGE
thank you to all of those that are responding to my plea for help with
e mailing your Ertl stories to my work comp carrier,
I am touched by all those that are responding, thank you for sticking with a fellow amputee...
Today is my 2 year anniversary of losing my leg, time really flies.
Thank you again and keep sending the emails. I think we may be getting
some where!!
Kimberly Peterson <kjanepeterson@hotmail.com>
Oakdale, MN USA - Thursday, May 18, 2006 at 23:15:53 (GMT)
Jeanne
Morris~~~~~~~Seeing that you are at the bottom of the hill that gives
you the advantage. Walk up to the top of the hill strap on the roller
blades say a prayer and away you go.
Usually as most will agree with me on this site when there is
associated pains other than the phantoms is usually has to do with a
bad fitting socket. Check out having your Certified Prosthetist make
the proper adjustments.
P.S
Some Matresses at the bottom of the hill probrobly would not be a bad idea either
Whats the Path?? will power and determination
Good Luck
FL USA - Monday, May 15, 2006 at 13:01:53 (GMT)
Hi
Dan...I am 46 and have been an amputee for 3 years. I have a goal of
roller blading, But am having trouble with my new prosthesis and pain
in long hauls.
Trying to quit smoking and need some support. I live at the bottom of a hill.
(Now I feel like a whiner) I am giving it the summer now before I have to think about a scooter.
Help!!!How do I get stronger??
What is the path??
Jeanne Morris <jamiejeanne@sbcglobal.net>
USA - Monday, May 15, 2006 at 00:37:56 (GMT)
Hi...On
April 27th of this year I became a L/BKA due to a gun shot wound to the
foot that could not be healed. I am new to this way of life and have
had serious bouts with depression as well as phantom pains. I have lost
everything with this to include my home, job, and wife and kids. The
main thing I am looking for is advice on what I have in store.
I am not generally someone who likes to be suprised or just waits to see how things unfold.
At the same time, when this happened I was without insurance so my hopes of getting a prosthetic were diminshed.
A big question that I have is that since the amputation I have problems
with bowel evacuation. It causes a painful sensation in my stump. Did
the doctor possibly make an error with my nerves, or is this normal?
Any help and advice for my new situation would be greatly appreciated.
Thank you.
Jeff Hall <jd_hall_jd@yahoo.com>
Killeen, TX USA - Sunday, May 14, 2006 at 14:08:52 (GMT)
Hello
Everybody...I have a very good friend in Canada who is a Bilateral AK,
he is heading to an Appeal court in a fight over the term, "Mobility
Aid."
They are having a problem with the wording of his definition of
"Mobility Aids." It is now a common phrase used and understood by most,
but is not a term that one can look up and find a actual definition.
I have been surfing the Internet looking for a plausible definition
of a Mobility Aid, and have not had much luck. Do any of you have
something that defines a Mobility Aid, legally or professionally?
The Insurance Network in Canada, is not something that you would wish upon others!
It is very hard to get anywhere once you are injured, you are pretty much "on your own" there.
And here I bitch and cry about Texas Workers' Comp!
I have better "quit whining!"
Thanks
Ted A Snelling
Marketing / Operations
Pioneer Drilling Company
334 Flato Road
P.O.Box 2963
Corpus Christi, TX 78403
(Office) 361-289-9241, Ext 108
(Fax) 361-289-0530
(Mobile) 361-215-5839
tsnelling@pioneerdrlg.com
biguncleted@aol.com
Ted A Snelling <BIGUNCLETED@aol.com>
Corpus Christi, TX USA - Sunday, May 14, 2006 at 13:57:48 (GMT)
Hi Dan and readers,
My name is Kimberly Peterson. I have written several times to your site
seeking advice and ALWAYS receiving excellent advice in return, thank
you. I am here today not to ask for advice but to ask for a favor of
all the readers of this guestbook. I have met some of the kindest
people from this site so I hope that your kindness will assist me with
my problem.
I have been a RBKA since 05/04. I had my amputation as a self
request. I had broken my ankle years ago, never healed properly (even
after 9 surgeries) so to rid myself of my useless foot/ ankle and
constant pain, I elected to do the Trans-tibial amputation. I found
this site before my amputation and used it to gain advice and knowledge
of what I was getting myself into and what I was going up against and
again, you all provided me with tremendous support.
This site is also where I learned of the Ertl Procedure. Once
researching this procedure, I knew it was the ONLY way for me to go.
Unfortunately, living in Minnesota, there is not a Ertl doctor near to
me. My injury is a work comp deal so I have to follow their steps,
policies and procedures.
Work Comp found me a doctor right near me, an Orthopedic doc that is
supposed to be "one of the best" I visited him and after a lengthy
visit, I made clear that I wished for an amputation utilizing the Ertl
Procedure and the Doctor replied that he knew the procedure but didn't
know why I wanted it and I was the first of his patients to have asked
for it. Anyway very long story short, I went thru the amputation,
thinking I had the Ertl. Now, here I am, 2 years and 5 more operations
later (due to revisions to rid the bursa sacs that keep re-growing), I
find out that the doctor claims he did the Ertl but was proven that he
did not do the procedure.
Now, I continue to grow bursa sacks at the tip of the tibia, which are
VERY PAINFUL while wearing the prosthesis, 4 neuromas in my stump and
an unstable and mis-shapened stump.
So here is my quagmire, I wanted to have the Ertl the first time,
and still want it. My work comp carrier is refusing to pay for me to
have the procedure. They feel I got an amputation, like I wanted, and
that is good enough. I have been to see Dr. W. Ertl recently and he is
offering me hope that he can fix my leg and return me to a stump that I
am able to function with, unlike the mess of a stump I am stuck with
now. My work comp carrier feels that this procedure is unnecessary and
thinks I should be satisfied with where I am currently at.
What I am asking from you readers is if anyone would please take the
time to e mail my work comp case manager with a personal story or
reasons on why this Ertl Procedure is beneficial to an amputee. I have
sent them numerous articles and videos on the subject and they don't
seem to want to budge. I am thinking that maybe if they get bombarded
with e mails supporting this procedure, they may consider it more for
me. Basically like a political thing where you write to your
congressmen etc. So, if anyone could find it in their hearts to take
the time to e mail a short story or reason promoting the Ertl
Procedure, I would be eternally greatful and would return the favor to
others if asked.
Here is my carrier's information:
CompCost
Attn: Michele Paton
re: Kimberly Peterson
michelp@sfmic.com (her e mail address)
Once again, thank you all
Kimberly Peterson <kjanepeterson@hotmail.com>
Oakdale, MN USA - Saturday, May 13, 2006 at 04:17:01 (GMT)
Bloorview
Kids Rehab and the University of Toronto are organizing an
international, web-based survey of individuals with upper limb loss.
This anonymous survey will provide an excellent opportunity to share
experiences and voice opinions. We will ensure that the views
communicated will be made known to healthcare providers, prosthesis
designers and of course, our participants worldwide through
conferences, journals, and public reports. We would be very grateful if
you could circulate news of this survey amongst your members or post a
link to it from your website.
(www.prismlab.org/survey.htm)
We want to make sure that as many people have access to it as possible.
We hope that the results of this study will lead to improvements in
available resources that will directly benefit individuals with upper
limb loss.
The survey takes about 20 to 30 minutes to complete and is
inclusive of all ages and levels of upper limb loss. Parents are asked
to fill out the survey for their children and both prosthesis wearers
and non-wearers are
encouraged to take part. It is currently available in English. Spanish,
French and Dutch translations will be available in the next few months.
If you would like other translations or paper copies of the electronic
survey, please let me know. This study has been approved by ethics
boards at both the University of Toronto and Bloorview Kids Rehab.
Thank you!
Sincerely,
Elaine Biddiss, MASc
Survey Coordinator
Bloorview Kids Rehab, University of Toronto
Telephone: 1-416-425-6220 x3270
Toll-free: 1-800-363-2440 x3270
Fax: 1-416-425-1634
Email: elaine.biddiss@utoronto.ca
Elaine Biddiss, MASc <elaine.biddiss@utoronto.ca>
Toronto, Canada - Friday, May 12, 2006 at 15:50:15 (GMT)
Hi
Jason...My name is Jonas Chladek and we have an orthotic &
prosthetic facility in Des Moines, IA. I understand that it is quite a
drive to des moines,
however we have patients that travel from as far away as Kansas City
and Minneapolis to be seen in our Des Moines location. We can usually
make the most of each visit, and often times rapidly produce an item
for fitting the same day, which is helpful considering the distance you
must travel.
I will include some contact information below..
Unfortunately with any amputation, there are several variables that can
affect the overall rehabilitation of the amputee. It is important to
consider and eliminate as many of these variables as possible.
This sounds like the scenario your wife has been presented with, and I
am truly sorry to hear that she is having to deal with these
complications.
The good news is that she is not alone, and you are not without options!
We have had several amputees who have contacted our offices after
running into brick walls while dealing with these difficulties.
We will conduct a thorough evaluation to include: Physical condition,
prior & current treatment, surgical procedure, prosthetic fitting
& device selection, as well as suspension complications. We will
discuss all of the possible solutions, provide answers for your
questions, and conduct research to find the answers for the questions
we cannot answer.
We will work with both of you to designate a plan to make your collective goals become a reality.
It sounds like you have not lost hope, which is exciting to hear from a
prosthetist standpoint! We look forward to meeting and/or speaking with
both of you.
Sincerely,
Jonas Chladek
Chladek O & P
1300 keo way
Des Moines, IA 50309
515.244.4040
Cell: 515.720.5646
www.ChladekOrthotic.com
www.Phatbraces.com
JONAS CHLADEK <clawmoses@msn.com>
Des Moines, IA USA - Sunday, May 07, 2006 at 15:56:19 (GMT)
My
wife lost her leg to necrotizing fasciitis. It is a below the knee amp,
but she has uneven skin grafts all the way to her buttocks. She has
been fighting with staph and cellulitis in her stump over the past year
and a half. Recently they discovered staph in the actual bone of her
amped leg and started a pic-line IV antibiotic. That sort of went south
and she just got out of the hospital dealing with that. Her orthopedic
doctor just told her she should put idea of ever running again out of
her mind.
She caught the nec fasc from a bunionectomy to help her have less pain while running, so I'm sure you get the devastating irony.
She is about at the end of this rope, I think. I am looking for a
way to give her the sense of running without actually damaging the
stump. She won't be able to wear her pros-leg for some weeks while they
try to get this under control, so she is on the hated crutches and
wheelchair for a while.
Do you have any suggestions?
I saw a harness type system for people running in pools. Is that something that might work for her?
Thank you.
Jason Alberty <jalberty@zeus.ia.net>
IA USA - Sunday, May 07, 2006 at 15:46:17 (GMT)
For Richard Morgan...Regarding collapsible crutches.
You can get a great set of collapsibles that even come with a carrying case at
http://www.fetterman-crutches.com/
I have the same pair but not with the fetterman add-ons which I
would highly recomend. I use a set of custom made titaniums by the same
company and can really vouch for their crutch feet and grips as being
the best there are.
Hope this helps.
Edward Donnelly <itsed65@yahoo.com>
USA - Sunday, May 07, 2006 at 13:44:33 (GMT)
Please Join Amputees in Motion (AIM) for an Advanced Gait Training Clinic for Lower Extremity Amputees on Saturday, MAY 20th.
This will be the perfect opportunity to train and get in shape for the
fourth annual Hope & Possibility 5M on Saturday, June 17th, 2006
(at the ACA Conference) and on Sunday, August 6, 2006 in Central Park
organized by the Achilles Track Club (www.achillestrackclublorg).
Who's ready to "AIM Higher" and set some running records? If you
need a ride, AIM will be car pooling from NYC. Please call Jeremiah for
ride sharing 212-920-1033.
Please call today to register or if you have questions about the clinic:
Contact Todd 631-351-2274.
Hope to see everyone there!
Cheers,
Jeremiah Perez
Executive Director
Amputees in Motion
(c) 212-920-1033
(f) 480-247-4976
(e) jeremiah@aimny.org
NEW WEBSITE: www.aimny.org"AIM Higher"
About Us: Amputees in Motion is a non-profit organization for
people with limb loss interested in activities in the greater New York
area.
AIM's mission is to encourage people with limb loss to benefit from an
active lifestyle since the loss of a limb can increase a sedentary
lifestyle and cause secondary issues.
Jeremiah Perez, Executive Director <jeremiah@aimny.org>
New York, NY USA - Friday, May 05, 2006 at 17:51:47 (GMT)
Do you or any of the other stumps know of collapsible crutches?
I am looking for something I can put in a carry on bag for airline
travel to use at the end of a flight if needed, as well as just to keep
in the car for emergencies.
I have heard of canes like this but not crutches. Any help would be greatly appreciated.
Thank you!
Richard Morgan <Richard.Morgan@steelscape.com>
WA USA - Friday, May 05, 2006 at 14:59:51 (GMT)
Connie
in Newman, GA...As Dan has said about us bilateral bka, it is a whole
different ball game when it comes to walking, but it can be done. I
walk with no aid whatsoever, and am back to doing about 95% of what I
was doing before I lost both of my legs in March of 2002.
I to had to make a decision about my right leg.
I had gangrene in my foot real bad. It started in the toes. By the
time they got me to surgery, it was half way down the back of my foot.
The doctors told me that if they saved my heel that it was possible
that I would be back in for another surgery in three to six months.
That's when I said cut it off and get it over with. I didn't want to
come back a third time.
I hope this helps.
Jack (Pegleg) Pickerd <sparksjwp60@adelphia.net>
Fontana, CA USA - Thursday, May 04, 2006 at 15:08:45 (GMT)
Diana in Alameda, CA...I suggest you call Bill Foster, President of Accessibility Services, Inc right here in the Bay Area.
Bill will come to your home and tailor the services to Sean's needs and your household budget.
Saturday June 17th is our Stumps ALMA Cruise. Details are on page one of this web site. You BOTH should be on it!
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Thursday, May 04, 2006 at 13:44:57 (GMT)
After
5 years of battling bone infections including over 25 surgeries, my
husband had his right leg amputated about 4" below the groin this week.
Sean's got a great attitude and is accepting this new challenge with
grace, courage and humor.
We've been talking about accommodations to make here at home to help
him get around well for the next several months until he can be fitted
for, and adjust to, a new prosthetic leg. Can you recommend any
resources for finding real life, common sense adjustments around the
house? He's using a walker now, but hopes to be using his crutches
soon. During the next several months I want to help him reclaim as much
of his life as possible. He enjoys cooking, for example, and I need
ideas for some way he can 'scoot' around our small kitchen going from
fridge to counter to stove to sink etc, carrying food, plates, pots,
utensils etc. Hopping on one foot is not an option!
I've been researching online and looking at the catalogs of rehab
equipment but not finding any practical ideas that don't cost - forgive
the expression - an arm and a leg.
If you have resources or ideas I would love to hear about them.
Diana <d.mcd1@comcast.net>
Alameda, CA USA - Thursday, May 04, 2006 at 13:39:58 (GMT)
Hi Dan!
I wanted to tell you about an event that I am involved in
planning. It's called the O & P Extremity Games. It is the first
ever Extreme Sports competition for amputees.
For details please see our website at www.extremitygames.com .
The event will be held July 28th through the 30th in Orlando, FL at the
Orlando Watersports Complex. Registration and a Health Expo will be
held on Friday, July 28th. The competitions will be held on Saturday,
July 29th.
The sports that individuals will be competing in this year are
Skateboarding, Rock Climbing, Wakeboarding, and BMX Biking. We have a
$25,000 cash purse for the winners. In each sport we will award $5,000
to 1st place, $1,000 to 2nd place and $500 to 3rd place. We will be
having several demos performed for entertainment by amputees on
Saturday as well, including Sky Diving, Trials Dirt Bikes, 4 Wheelers,
and a Kayaking races by the Wounded Warriors. On Sunday, we will be
having free instructional clinics for people interested in trying any
of the sports from the day before.
I am contacting you to see if you or anyone you know may be
interested in helping or participating in this event in any way. We are
open to your ideas! Downloads are available on our website for your use
if you are interested.
Thank you!!
Stephanie Wallace <Stephanie@college-park.com>
Orlando, FL USA - Monday, May 01, 2006 at 02:28:04 (GMT)
Connie
in Newnan, GA...If it was me that had to make the decision I would opt
for the 2nd B/K amputation now rather than later UNLESS the doctors
think that removing just a toe would solve your poor circulation
problem.
Since another surgery involving a transplant is already in your future I would want to be hospitalized as little as possible.
With two B/K amputations walking is tougher than with just one BUT can
be done. We have sever bilateral amputees in stumps 'R Us that walk
very well.
Good luck in whatever you decide.
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Saturday, April 29, 2006 at 14:19:38 (GMT)
Hi
Dan, I received a right b/k amuptuation almost two years ago, and lo
and behold, I'm having the same pain and redness in my other foot now.
I'm diabetic for 40 years
with kidney failure waiting for a transplant, but I'm so afraid of
losing my other leg.
Do you suggest I try to talk the Dr's into just taking off the toe?
I have poor blood supply and thats whats causing the pain.
Or should I do as they wanted to last and go
straight for the below knee.
I walk pretty good, so people say great, with my prosthetic leg and it is very comfortable.
Will I be able to walk again?
I have so many questions I am overwhlemed.
Please ask some one to write me .
Thank you!
connie mcdonald <maxgirl926@yahoo.com>
Newnan, GA USA - Saturday, April 29, 2006 at 13:51:27 (GMT)
Thank
you so much for your advice...and for being kind enough to answer. I
know/knew that would be the right approach....I guess I just maybe
needed confirmation.
Again I do appreciate your understanding and allowing me to use this format as a resource.
Thank you!
daniellle cavezza <danicavezza@yahoo.com>
Cleveland , OH USA - Monday, April 24, 2006 at 23:01:54 (GMT)
Dani in Cleveland, OH...The solution to your dilemma is simple. IT IS HONESTY!
Say to your new friend precisely what you said in this E-mail.
Assure him that his amputation is not a "relationship killer". Explain
that you have even more respect for his getting on with his life as
that demonstrates character & strength. Ask questions about the
prosthesis, the accident and other facets of his life.
Character is not in the limbs. It is in the heart
Dan Sorkin <DanSorkin@comcast.net>
San Francisco, CA USA - Monday, April 24, 2006 at 20:53:31 (GMT)
First
I must say that I am not an amputee myself. I apologize if perhaps this
is the wrong forum in which to ask this question, but I'm looking for
some guidance and help and thought perhaps I could find some
perspective here.
About 2 months ago I met and started to date and form a
relationship with a guy I had met at school. (college) We met first in
class and then later at a party and easily formed a friendship. One of
the things I "noticed" about him was that he had a limp or some
difference in his gait.
I didn't ask, I didn't probe....it made no difference etc etc. He didn't offer an explanation.
Things have/had progressed to a point that complete honesty is key and
he told me that the difference is his gait is because is an above knee
amputee and lost his leg about 5 years ago in a boating accident.
Since that time, things have been different and I sense that he is pulling away.
I have thought about my reaction to this news and I can honestly say
that while I was certainly surprised, I don't think that I reacted
negatively. I'm sure my body language revealed shock and
surprise....but those were honest.
I told him that I was sorry and that it's obvious to me that he
handles it well, that I was glad he finally felt comfortable in telling
me. I felt awful for him that he had to go thru the apparent agony of
sharing this news with me.
But that the bottom line was that my feelings for him didn't
change....if anything I felt even stronger for him because of this.
(because of his strength to have gotten thru etc)
Now...because of how he has responded I am so afraid that I said the wrong thing, reacted the wrong way.
HELP! What do I say? Did I say something offensive? How do I help him past thinking that perhaps this is a relationship killer?
I really like this person and felt like we had something special
developing. That he is missing a leg and uses a prosthetic one does not
matter to me one bit. I know this in my heart...how do I help him to
know it in his?
Thanks for any help and suggestions,
daniellle cavezza <danicavezza@yahoo.com>
Cleveland, OH USA - Monday, April 24, 2006 at 20:45:59 (GMT)
Just alittle note about the ERTL proceedure.
For most amputees it works wonders. But there is a small percentage it doesn't work as well.
I am that small percentage.
I seem to have always been that 2% patient. It's been 1 year and three
months since my surgery. One side of my bridge has not yet calcified.
They took 2 big nuromas out and I can diffently feel a big difference
with that. But I still have some pain. It's not as much as it was and
it doesn't keep me awake like it use to. So all and all I am better
than I was but not quite as good as I expected.
Life is beautiful so I willl accept what I have and do my best with it.
I just wanted to give another view on the ERTL procedure.
Debbie <debc328@msn.com>
Council Blufs, IA USA - Sunday, April 23, 2006 at 17:05:44 (GMT)
Attention STUMPS! This is an announcement of an upcoming event in Orlando, FL
http://www.extremitygames.com/
The O&P Extremity Games by College Park is an extreme amateur
sporting competition for individuals living with limb loss or limb
difference. Organized to raise awareness of the ability of amputees to
compete in extreme sports, the O&P Extremity Games allows
participants to demonstrate skill, persistence and passion while
competing in various events for cash and other prizes - all the while
proving There’s No Replacement for the Competitive Spirit.TM
Do you have what it takes? Prove It.
Individuals 13 years of age and older living with limb loss or limb
difference are eligible to compete in the O&P Extremity Games.
Is the competitive spirit in you?
Put your athletic ability to the extreme test in one of the following sporting competitions:
Skateboarding
BMX Biking
Rock climbing
Wakeboarding
Set your sights on:
July 28-30, 2006
Orlando, Florida
FL USA - Tuesday, April 18, 2006 at 14:24:59 (GMT)
My
name is Jasmine Bauknight. I am a student at Brown University. I am
doing research on a project that aims to build a better prosthesis
specifically for, but not limited to, military personnel injured in the
Iraq war.
I am trying to get a wide variety of perspectives from patients, and
practioners and would like to conduct an interview with anyone who is
interested in helping me understand what the amputee experience is
like.
At this time, I'm specifically looking for above-the-knee, and upper
limb amputees as well as military personnel who have had amputations as
a result of participation in Iraq or any previous war.
If you would be willing to speak with me about your experiences
with prosthetics, and share your opinions on drawbacks or possible
improvements, please contact me at Jasmine@brown.edu so we can set up a
phone or e-mail interview.
Thank you so much for your help!
Jasmine Bauknight <Jasmine@brown.edu >
Providence, RI USA - Friday, April 14, 2006 at 03:10:52 (GMT)
Lilie...Being a diabetic with a B/K amputation is not the end of the world. You have so much going for you.
1) Only one limb has been removed (below the knee)
2) You have two arms, hands and a surplus leg
3) You have a husband that takes care of you
4) You are an American living in the USA (not Iran or Iraq)
Your depression and socket fit will be cured by WEIGHT LOSS!
You have all the motivation you need to lose the weight.
1) You will walk again
2) Depression will disappear
3) Your husband will not leave you
4) You can look for a bigger apartment
Losing weight is difficult IF you have no real incentive. You have LOTS of incentives.
Get on with this life of yours. You only have one! Don't waste it.
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Wednesday, April 05, 2006 at 02:47:44 (GMT)
My
name is Lilie. I became an RBK in June of 2005. The last time I had my
stump in the socket and stood up and took some steps was around
Christmas time. I am a diabetic and putting on weight because I can't
move around. Because of the weight issue I am unable to put my leg on
myself. (I always need help from my husband)
It is very difficult to get myself in and out of bed because of my
weight. Hard to get in and out of the wheelchair also and not to
mention in and out of the van when I want to go places. Because of this
I don't go out much.
My husband and I live in a studio smaller then 20 feet by 22 feet. I
feel so trapped and my stump is too large now. It won't fit into the
socket.
I have trouble getting myself to my doctor who takes care my leg and socket. It just seems like a losing battle.
I need a new extra wide heavy duty walker and I can't afford to get one
because the one I need cost $500 and they won't take Medicare/Medical
which I have. I am just waiting for the one I have to give out of good.
Because of the weight gain I have doubled my fear of falling. I find
myself getting very depressed and feel like giving up. My husband and I
don't see eye to eye a lot of the time and I know it has something to
do with this room we live in. He is my full time care giver and it
takes it's toll on him as well as me because I have to depend on him
for everything.
I feel so helpless and often question if I will ever walk again. Most
of my days are dark and I just want to see some light again. I want to
live again. If anyone can help feel free to email me.
Thank You!
Lilie <LRoonikins@aol.com>
USA - Wednesday, April 05, 2006 at 02:36:13 (GMT)
Hello
Susan...Your inquiry found it's way to me, since I'm both a
hemipelvectomy amputee and a doctor. My web site is www.hphdhelp.org.
Technically, if the gal in question still has an intact pelvis, she is
a bilateral hip-disarticulation. If all or part of the pelvis was also
removed, she becomes a bilateral transpelvic (or hemipelvectomy)
amputee.
Granted, in either case, this is rare, and her future mobility is quite
limited. However, much depends on her age, basic physical condition,
other medical problems and conditions, if skin grafts were used, etc.
This becomes quite complicated.....
Usually people in this situation as a minimum will require a
"sitting socket", or "bucket" which will provide stability and comfort
to sit up straight. Artificial limbs can be attached, either for
cosmetic reasons or to stand, along with the use of canes and/or
crutches (highly unusual, but not impossible). Most people in this
situation will use a wheelchair, and she needs to know even with that,
her life is not over and is worth living. Special seating devices can
also be created for her if necessary.
My question to you is, are you asking simply for information or
curiosity.....OR does the lady in question require some specific help
and support dealing with this tremendous alteration in her body and
life??
I would highly recommend that you contact the Amputee Coalition of
America www.amputee-coaltion.org 1-888-AMP-KNOW They can provide her
with basic help and support in her time of need. If she wants more
specific information, or contacts to others, or prosthetists with
experience in dealing with this highly unusual situation, please don't
hesitate to contact me.
Sincerely yours,
Christina Skoski MD
www.hphdhelp.org
christina@hphdhelp.org
Christina Skoski, M.D. <christina@hphdhelp.org>
USA - Tuesday, April 04, 2006 at 23:58:56 (GMT)
Susan Sullivan in Indy...In addition this was what i came up with online just by entering amputee terminolgy Have a great day
AMP-L FAQ on Definitions:
Language evolves over time, as will this FAQ. The following will
help serve as a foundation for those unacquainted with the terminology.
AE: above elbow amputation
AK: above knee
Adherent Scar Tissue: Scar tissue formed in the healing process
which sticks to underlying tissue such as muscle or fascia or bone.
ACA - Amputee coalition of America
ADA - Americans with Disabilities Act
BE - Below Elbow
VSBE: very short below elbow
Symes - amputation at the ankle or through the foot
DAK - Double AK
Bilateral: both sides---legs or arms.
BK: below knee
Congenital: a birth anomaly such as a missing or different limb
Cosmesis: an odd term used to describe the outer, aesthetic
covering of a prosthesis. Refers to the appearance of the prosthesis,
whether a "naturalistic" treatment is attempted.
Disarticulation: an amputation through a joint: commonly the hip, shoulder, knee, ankle, elbow, or wrist.
Dorsiflexion: pointing the toe/foot upward, toward the body
Endoskeletal Prosthesis: one built more like a human skeleton with
support and components on the inside and a cosmetic cover on the
outside.
Exoskeletal Prosthesis: a prosthesis that is hollow on the inside
with a hard outer surface to bear weight built more like a human leg or
arm with support components on the inside and a cosmetic cover on the
outside.
Donning and Doffing: putting on and taking off a prosthesis.
HP: Hemi-pelvectomy: an amputation where approximately half of the pelvis is removed
HD: Hip Disarticulate - Entire leg removed
Ischial Tuberosity: the large sitting bone
Lateral: to the side, away from the mid-line of the body
Medial: toward the mid-line of the body
Myoelectrics: literally muscle electronics. Technology used in
prosthetic for upper-extremity amputees; used in prosthetic hands and
elbows to control the prosthesis via muscle contraction using
electrical signals from the muscles to the prosthesis.
Myoplasty (muscles anchored to opposing muscles)
Myodesis -referring to muscles anchored by sutures through the bone
Note: before the above anchoring procedures were adopted there was much greater at reduced function of the stump.
Neuroma: the end of a nerve left after amputation. The nerve will
continue to grow in a circular pattern and can be troublesome,
especially when trapped in scar tissue. A small mass or ball formed as
nerve fibers continue to grow after being severed in the amputation.
Orthotics :the profession of providing devices to support and straighten the body.
Orthosis :the singular for a supportive device. Orthoses is plural.
Orthotic is mostly used as an adjective. However it can also be
used as a noun. The usage of the noun form has historically been
limited to arch supports and was coined by the podiatric field---re: a
foot orthotic.
The noun form of the word is not generally accepted by Orthotists
or the Orthotics profession and is, in fact, frowned upon. Please don't
call your support an orthotic. It will send chills up the spine of
every respectable orthotist. Well, you can, but you won't be on the
money.
Partial Foot: an amputation on the front part of the foot
Plantarflexion: pointing the toe or foot down, toward the sole
Preparatory Prosthesis: stage between temporary and permanent
prosthesis, using transparent diagnostic test socket and special
fitting techniques to accurately fit the prosthesis so problems can be
eliminated before it is cloned for the permanent prosthesis.
Prosthesis: An artificial part of the body. In the case of amputees, usually an arm or a leg.
Prosthetics: the systematic pursuit of providing cosmetic and /or functional restoration of missing human parts.
Prosthetist: a person involved in the science and art of prosthetics; one who designs and fits
Posterior: the back side of the body or part in question---ie: Posterior knee or patellar region.
PTB: Patellar Tendon Bearing BK Prosthesis. The Condyles are the
proximal (near) ends of the tibia and fibula. My socket is a PTB with
additional weight on the condyles. This gives 3 major points of
contact, the patellar tendon, lateral condyle (fibula) and medial
condyle (tibia).
Early Prosthetic Fitting: A procedure in which a preparatory
prosthesis is provided for the amputee immediately after removal of the
sutures.
Modular Prosthesis: An artificial limb assembled from components,
usually of the endoskeletal type where the supporting member, or pylon,
is covered with a soft foam or other light material shaped and finished
to resemble the natural limb.
Definitive, or "Permanent" Prosthesis: A replacement for a missing limb
or part of a limb which meets accepted standards for comfort, fit,
alignment, function, appearance, and durability. Some amputees think
this result is as rare as kryptonite.
Check or Test Socket: A temporary socket, often transparent, made over the plaster model to aid in obtaining a proper fit.
Preparatory Prosthesis. An unfinished functional replacement for an
amputated limb, fitted and aligned in accordance with sound
biomechanical principles and worn for a limited period of time to
accelerate the rehabilitation process.
Prosthetic Feet
SACH:
Single Axis Cushion Heel---or Solid-Ankle Cushion Heel: foot used
since the Civil War. It is based on an ankle hinge that provides
dorsiflexion and plantarflexion. The disadvantage of a single axis foot
includes poor durability & cosmesis;
Multiaxis foot: allows inversion and eversion and rotation of foot
and is good for work on uneven surfaces at the expense of overall
utility and weight.
Energy Storing: designed with a flexible keel and may perhaps
become the new standard for general use. They are designed with a
cantilever spring and are best for young & athletic patients.
Pylon. A rigid member, usually tubular, between the socket or knee
unit and the foot to provide support. Often what is referred to as a
pole in a temporary prosthesis; the weight bearing support shaft in an
endoskeletal prosthesis.
Ramus: the middle portion of the pubic bone, in the crotch area.
the front middle portion of the pubic bone, palpated just above the
genitals
Residual Limb: remaining portion of a limb after amputation
Rigid Dressing: A plaster wrap over the stump, usually applied in the
operating or recovery room immediately following surgery, for the
purpose of controlling edema (swelling) and pain. It is preferable, but
not necessary, that the rigid dressing be shaped in accordance with the
basic biomechanical principles of socket design.
Shrinker: a prosthetic reducer made of elastic material and designed to help control swelling of the residual limb.
Stump: a word commonly used to refer to the residual limb.
Supracondular Suspension: a method of holding on a prosthesis by clamping above a joint.
Symes: An amputation through the ankle joint that retains the fatty
heel pad portion and is intended to provide end weight bearing.
Temporary Prosthesis: a prosthesis made soon after an amputation as
an inexpensive way to help retrain a person to walk and balance while
shrinking the residual limb.
Transtarsal amputation: through the tarsal (tarsus) or foot bones
Normal Shape/Normal Alignment (NSNA) - also know as a narrow ML
socket: First described by Ivan Long, this socket more closely
approximates the shape of the musculature of a residual limb, when
compared to a quad socket.
The sides, or medial/lateral measurement is tightened down to
squeeze the residual limb, with most of the squeezing taking place on
the outside or lateral side. This helps control the rotation of the
socket by putting pressure along the fleshy area of the leg that can
handle some side to side pressure.
Long's Line was also first described by Ivan Long, and has to do
with the location of the foot in relation to the head and distal end of
the femur and is used in alignment. It is a straight line from the head
of the femur, though the distal end of the femur down to the center of
the heel of the prosthetic foot.
The Ischial Containment Socket is a derivative of the Narrow ML, as
a special attempt is made to form a little pocket for the ischium to
sit in:
The ischium is a bone that protrudes from your pelvis that may get
sore when sitting on a hard surface for extended periods of time.
An Ischial Containment (IC) socket cups this bone on the inside and
back as well as the bottom to accomplish two things: 1) By cupping, or
containing this bone inside the socket, the socket tends not to shift
laterally (outside) when weight is put on it, making walking more
efficient. This style of socket can be very intimate and may take some
time to get used to in order for it to become comfortable.
TEC: Total Environmental Control liner
A TES belt is a suspension system that has a neoprene ring which
the prosthesis slides into. There is a neoprene belt that attaches
around your waist by velcro (uhh, hook and loop fastener). It usually
gives good suspension but can be hot in a warm climate.
VSP - Vertical Shock Pylon - Shock absorber on the Reflex VSP model prosthetic foot by Flex Foot.
CA USA - Tuesday, April 04, 2006 at 03:33:55 (GMT)
Dear
Susan in Indianapolis, IN...The condition you described is called
either a Hemipelvectomy or a Bi-Lateral Hip Disarticulation.
DanSorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Tuesday, April 04, 2006 at 00:30:10 (GMT)
Hi,
Dan! I encountered your Web site looking for the correct medical
terminology that one would use to describe someone who has had both
legs amputated and there are no resulting stumps. In other words, the
bone was actually removed from the hip socket. Do you know what that is
called?
There is a woman here in Indianapolis who has had to have the
procedure done because of severe blood clotting. She was on
blood-thinning medicine for lupus, I believe, but also had kidney
issues. They needed to do a biopsy on her kidney, so took her off the
meds for about one week. Because she wasn’t taking her meds, the
developed severe clots and they tried partial amputation but then
gangrene set in. Hence, they’ve now removed both of her legs.
I want to research the procedure in more detail, but don’t know the proper terms.
Any assistance you might give would be appreciated.
Thank you.
Susan Sullivan <ssulliva@ihets.org>
Indianapolis, IN USA - Tuesday, April 04, 2006 at 00:27:55 (GMT)
Dear Workers' Compensation Case Manager in the Orlando, FL Area (do you have a name?),
The closest thing I have to a Stumps 'R Us type of "humor therapy
plus" is Tony Barr of the Barr Foundation in Boca Raton. Tony's E-mail
address is t-barr@t-barr.com Good hunting!We can forgive a child who is
afraid of the dark; the real tragedy of life is when men are afraid of
the light.
...plato
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Tuesday, April 04, 2006 at 00:23:04 (GMT)
I
am a Workers' Compensation Case Manager in the Orlando, FL area. I am
working with a patient who with ATK amputation due to a severe injury
at work. He is having difficulty adjusting. I did some research on-line
and feel that Stumps-R-Us type of "humor therapy plus" might be perfect
for him. Do you have a chapter that meets near here?
BLANK <smburton@cfl.rr.com>
Orlando, FL USA - Tuesday, April 04, 2006 at 00:21:03 (GMT)
This
is some basic information that describes the MIRROR BOX THERAPY. This
concept goes back many years, and is getting much recent attention.
This was my experience:
My amputation (right primary hand) left me with a strong "clenching"
feeling and intense "phantom" pain. I felt I could not unclench the
missing hand, or "shake it out" to mitigate the pain. The experience
would last for hours, and at least twice a day, plus the bonus of
sleep-time episodes.
The mirror I used was a 12" x 18" which I placed on the vertical on
a tabletop, mirror reflecting my good hand, with my stump out of my
view, on the non-mirrored side. I would concentrate on my good hand,
clench and unclench it, shake out the pain I sensed in my missing hand.
After several repetitions, the pain subsided, as I imagined I had full
use of my "phantom" hand.
I would repeat this exercise each morning, and whenever I had an
episode. Within a week, the pain episodes were very few. In several
weeks they were completely gone.
A "humorous" side effect resulted as my mind had convinced itself
the hand was back, I found myself dropping items, misjudging distances
to doors, etc, leading to a number of "I Love Lucy" moments... but they
ended within weeks.
Here is another related reference:
Ease pain by taking a good look at yourself
13:10 01 November 2005
NewScientist.com news service
Gaia Vince
Related Articles
Under the knife, under hypnosis 06 August 2005 They do it with
mirrors 17 June 2000 The strain is in the brain 10 April 1999 Search
New Scientist Contact us Some patients suffering chronic pain in their
limbs have found an unlikely source of relief – mirrors. Researchers
say the drug-free treatment works on people with complex regional pain
syndrome (CRPS) and repetitive strain injury (RSI) because it tricks
the brain into correcting its distorted image of the body.
CRPS occurs in about one-third of people who fracture their wrists:
they suffer unexplained persistent pain in their hand, arm or shoulder
once the supportive plaster cast is removed. The pain can be so bad
that some patients beg for their arm to be amputated, says Candy
McCabe, who developed the novel mirror therapy.
In the study, eight CRPS patients sat in front long mirrors. These
were placed so that each person could see only the healthy half of
their body, along with another reflection of the same half.
The result was that the side of the body with the painful arm was
hidden from their view and it appeared to the patients as if they had
two healthy arms. They were told to concentrate hard on the image and
try to believe that what they saw was a true depiction of themselves.
“Three of them were cured instantly; the others took a little
longer,” says McCabe. “But once the mirror was removed, the pain
returned.” However, with continued mirror therapy, six people were
completely cured. The two exceptions had conditions complicated by limb
ulcers and actual physical distortions.
Since the experiment, McCabe says she has successfully treated many
other CRPS, and RSI patients, with the technique. She believes the pain
results from a mismatch in the way the brain perceives the body and the
actual condition of the body.
The brain is constantly sending signals to the body, predicting things
like the shape and weight of the limbs, and their location. The sensory
nervous system responds by sending information back, allowing the brain
to refine its body image.
“When the arm is immovable in a plaster cast a mismatch occurs,"
McCabe says. "The brain sends out signals to the arm, but gets nothing
back, so it triggers its own pain sensation in response." When the cast
is removed, most people recover from the confusion spontaneously, but a
third continue to feel pain. "The mirror tricks the brain into
resetting its body image and stops the pain,” she says.
Carol Hollmann <JuneCat17@aol.com>
CA USA - Friday, March 24, 2006 at 18:11:30 (GMT)
Breast
cancer survivor ,amputee and renown author of "Becoming Whole", Meg
Wolff of Cape Elizabeth, Maine , became yet another amputee who
underwent the Ertl Osteomyoplastic Procedure and her testimonial is
listed under the Ertl Amputee link at www.ErtlReconstruction.com.
Her story is a testimonial of courage and inspiration to all amputee and their prosthetists.
"Like many amputees I began the search for the Holy Grail; a
prosthesis that fit properly and didn't cause additional pain. My quest
for that perfect prosthesis opened my eyes to the issues amputees must
deal with - surgeons who don't understand prosthetics, prosthetists
with skills that have not kept up with technology, and a
blame-the-victim attitude.
But by 2005 the pain from a neuroma made wearing my prosthesis
impossible.I was at my wit's end. Then I came across a video tape on a
surgical reconstruction technique that claimed to restore strength and
relieve the pain in amputated limbs.
The Ertl reconstruction technique was developed by Janos Ertl in 1920, an orthopedic surgeon, and carried on by his grandsons.
Was it possible it could help me?
I learned that the documentary was produced by the Barr Foundation,
which is an advocacy group for amputees. Its president, Anthony Barr,
is also an amputee who was driven to spread the word about the
procedure when his father - also an amputee - underwent the procedure
and achieved pain-free mobility after eight years of excruciating pain.
Like anyone who has gone through the trauma of having a limb amputated,
the last thing I wanted to consider was another operation. Still, I
felt it was my only chance. On April 2, 2005, Dr. Jan Ertl performed
the surgery on my leg. During the surgery, Dr. Ertl removed the neuroma
and reconstructed the bone and muscle padding at the base of my leg.
After 15 long years, my leg had been reconstructed. It returned to the
girth and fullness that it had when it was originally amputated.
The pain was gone!
I am forever grateful for the work of Anthony Barr and the Barr
Foundation and Dr. Ertl. Because of their dedication, I found hope and
my life again.
Meg Wolff
Erik Schaffer CP and Dave McGill Executive Director of A Step Ahead
Prosthetics and Orthotics in New York
outbind://7/www.astepaheadonline.com
www.astepaheadonline.com were also added to the growing list of Ertl
prosthetists from around the country who have fitted Ertl limbs.
Read her and dozens of other Ertl amputee stories,who were given
new leases on life when they became recipients of the Ertl Procedure.
Tony Barr <t-barr@t-barr.com>
Boca Raton, FL USA - Tuesday, March 21, 2006 at 17:40:27 (MST)
hi kylie jo...i'm confused..lets see if i have this line up correct;
lindsey - sister, kylie jo - sister with boy friend, what's his name?
am i on the right tract? and how long ago was his injury?
now...some 'handy' comments...my opinion only.
so much of this disability. amputee stuff is a mind game. its up
to the individual to succeed. once i accepted that my hands were gone
and would never grow back i was able start my quest to conquer the
world. (that journey began the moment i woke up in the hospital) we are
all very powerful, we can do whatever we want...once we make the
decision.
people think i laugh at myself but really i laugh at my
situation...one day an airline captain driving race cars, flying race
planes...a split second later a bi-lat be amp. now that's rags to
riches.
life is fun and it gets better every day. kids are fantastic to
work with. (great therapy too) such as halloween. they have scary
costumes but when i answer the door with no hands or with my myo hand
on and a long sleeve coat...hand them a candy and spin my hand 360
degrees...that's scary!
you mentioned struggle. life is a struggle for everyone. let him
try by himself before you lend a 'hand'...he has to learn his own
limitations and then learn to work within them. in time you will be
amazed at what he can do, so will he.
friends and family are so important. i have a great wife who has
stood by me everyday of this new life. i cannot thank her enough... she
laughs when i tell her girlfriends i'll 'keep my hands to myself'.
i spent some time in the military too, about 11 years. a great career that was all too short...
imagine a 24 year old kid, a government credit card and a supersonic jet..life in the fast lane!
and..i still live in that fast lane. (there is no other place to be)
keep in touch,
Semper Fi,
mike
Mike Penketh <PittsS1@aol.com>
Vacaville, CA USA - Thursday, March 16, 2006 at 06:28:08 (MST)
hi
lindsay...i am not a doctor but maybe i can offer some info from a
'like amputee'. i lost both hands in a race car accident in 1993 and i
can say that life has gotten better every day since my accident. i am
referred to as a 'bi-lat BE amp' , that means no hands. i use otto-bock
myo-electric hands to do almost anything i want to do.
now to your sis's boyfriend...sounds like military...which branch?
it sounds as if he wears a myo (electric) powered hook on his right
side, that's probably a good choice. but, remember the body powered
hooks also work quite well. he has to make the decision on the type of
prosthetics that best enable him to reach his goals.
feelings, called phantom feelings.
these can be expected. even after 13 years i can feel all my
fingers even dirt under my non-existent finger nails. the mind is weird
and complex with my prosthetic hands on i feel everything, with them
off i feel nothing.
pains, called phantom pains can be quite painful. fortunately i
don't suffer from them. my nerve endings were severed / ended in such a
way as there is no feelings.
seeping fluid / shed skin...how long ago did this happen? this
doesn't sound abnormal, it might fall into the phantom feeling
category. dunno, but if there is no pain associated with the feelings i
wouldn't worry.
i got back to the real world quickly, very quickly. within 4 months
i was driving a car, a stick shift corvette. flying was a little longer
but within 2 1/2 years i was flying aerobatic contests (and winning)
and flying aerobatic air shows including a month flying shows in south
africa.
i found the best therapy was talking about my loss. i toured the
country as a spokesman for novacare, now hanger prosthetics. i
volunteer with a group called 'A touch Of Understanding', we tour
schools giving presentations on disability awareness and service dogs.
a benefit to our disability...we can have a service dog. magy is by
my side 24/7, hotels restaurants, airlines...everywhere i go. she has
participated in almost 700 ATOU presentations to almost 20,000 kids.
we discovered the dog sport called 'agility' . (never wear my hands
at a trial) at first others would say 'how you gonna do that' ... that
soon changed 'you guys do pretty good' ...now it's 'damn i wish we were
that good'!
we now trial about 3 weekends a month, all on the championship level.
from a 'rock n roll, hair on fire' military pilot to a 100% disabled
person, to working with kids, to a championship agility
handler............life really does get better every day.
mike penketh n magy
if you want..call me 707 451-9137
Mike Peketh <PittsS1@aol.com>
Vacaville, CA USA - Tuesday, March 14, 2006 at 18:40:36 (MST)
Dear
Lindsay...Former Airline Captain, Marine Fighter Pilot, Race Car Driver
and Stumps 'R Us Member Mike Penketh also lost both arms several years
ago. He uses MyoElectric hands to fly & drive. He built his current
aircraft and flies it in Aerobatic Competion with his Artificial limbs.
I have electronically Cc Mike your E-mail to me. Mike's E-mail address is:
PittsS1@aol.com
You should expect an answer from Mike soon.
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Tuesday, March 14, 2006 at 13:28:25 (MST)
My
sister's boy friend was badly burned in Iraq in September of 2004. He
lost both of his hands. He's got part of his hand but no fingers on his
left arm. He also lost he 1/4 of his right arm.
He wears a hook that is connected with his nerves on his right arm that
allows him to open and close things. On his left arm he wears a little
sleeve cover over the tip of his hand.
She mentioned to me that during the night she thought his arm or hand was seeping fluid, and it seemed to shed skin.
Is this normal? Neither my sister nor I have any formal training on
what to expect from this. We were just hoping to be more informed. I
hope you can help.
Thank you
Lindsay Dienst <booboodienst@yahoo.com>
USA - Tuesday, March 14, 2006 at 13:24:55 (MST)
Shannon
Morris in the San Francisco Bay Area...The BEST Physical Therapists in
the Bay Area in my opinion are ALL at the CPMC Davies Campus in San
Francisco on Castro Street headed up by Dr. Rome.
Dr. Rome is well acquainted with Stumps 'R Us. I suggest you call him directly.
DanSorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Friday, March 10, 2006 at 09:02:15 (MST)
I
was wondering if anyone knew of any good physical therapists that are
in the San Francisco Bay Area, preferably peninsula, who specialize in
working with amputees?
I'm in the process of receiving my two new above knee sockets. I have
not been to physical therapy for about 3 years. I think I might need a
refresher course.
All the physical therapists I've had that worked with amputees moved
away. They are hard to find haha. Please let me know if you or anyone
knows of any that I can contact.
Thanks
Shannon Morris <shanshan01@hotmail.com>
Bay Area, CA USA - Friday, March 10, 2006 at 08:59:17 (MST)
Erich
in Lombard...My local YMCA has a nustep recumbent cross trainer, but
without the swiveling chair (I think, I will check on my next visit).
I have found it to be a great piece of equipment since I became a R A/K
in Oct. 2004. My only problem is concentrating to keep my prosthetic
foot planted on the step plate. Currently I occasionally stop and move
my foot and then keep going.
Rick Morgan <Richard.Morgan@steelscape-inc.com>
Longview , WA USA - Wednesday, March 08, 2006 at 20:01:24 (GMT)
Hey
Dan...I just read the post from Erich in Lombard about exercise
equipment. Thought I would pass along this information. At Walter Reeds
PT clinic they had a recumbant cross trainer that really worked out
well for me. As an HD it was nice to be able to use the handles as well
as the pedal to get a good cardio and leg strenghtening workout. I
belive it was this piece of equipment or an identical one from a
different company.
http://www.nustep.com/product/index.html
Also it has a swiveling chair making transfers much easier.
Just thought it would help.
PS I am also a motorcycle accident victim, 2 years ago this Friday.
Ed Donnelly <itsed65@yahoo.com>
Discovery Bay, CA USA - Wednesday, March 08, 2006 at 02:08:55 (GMT)
Erich
In Lombard, IL...Because you read my introduction you know I am also
78, lost my leg due to a motorcycle accident in 1968 and am a current
Instrument Flight Instructor and Computer Science teacher here in the
Rossmoor Retirement Community in Walnut Creek, CA.
Your notion of a stationary bike to strengthen your father's leg
and improve his cardio is right on target. I would further suggest a
rowing machine. That is what I used. As far as I know there are no
SPECIFIC exercise devices expressly designed for amputees.
Pilates excercises will also help a lot! GOOGLE Pilates to find out what that is.
Your father's POSITIVE attitude is all that will get him through the
difficult times. It worked for me and it works for the global
membership of Stumps 'R Us.
DanSorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Tuesday, March 07, 2006 at 18:02:55 (GMT)
Dan...Your intro is very influential and I'm hoping you can steer me in a proper direction.
My father is 78 years old and lost a leg in a motorcycle accident
in 1981. The leg was amputated with about 4" of femur bone coming out
of his hip joint. It has been very difficult as of late for him to get
up and down.
There are extenuating circumstances like low heart rate and knee replacement (obviously creating a unique challenge).
Last Sunday he got up from his chair, lost his balance and fell.
Luckily nothing was hurt but his pride but he had no strength to get up
after that.
His physician has stressed how he needs to be more active but do to
his limitations this is very difficult to enact. I am thinking about a
recumbent stationary bicycle to help strengthen his leg and improve his
cardio.
Do you know of any company who specializes in amputee exercise
equipment or do you think I will just have to get creative on my own?
Any help would be greatly appreciated. Again, thanks for your help and inspiration.Thank you
Erich Harper <harperGI@sbcglobal.net>
Lombard, IL USA - Tuesday, March 07, 2006 at 17:59:45 (GMT)
This Is A Movie Recommendation From J. Curtis Kovacs, M.D.
The World's Fastest Indian starring Anthony Hopkins:
Themes that surface are of isolation, alienation, and beating the
odds to achieve your dream. What I can definitely say about 'The
World's Fastest Indian', is that it's very refreshing - this is no
typical underdog story; it's a story that proves that you're never too
old to follow through with a dream you've had for years. It was great
to have a protagonist that was older than the usual one in contemporary
movies, and seemed to give the film more of an anchoring in reality. It
makes it far more easier to believe in the story and it's motivations,
and heightens the sense of isolation one sometimes goes through when
following your heart.
Sir Anthony Hopkins does an amazing job as Burt Munro - the New
Zealand accent is impeccable, aside from one or two vowel sounds. His
subtleties communicate an intense psychological battle and
determination to get the chance to achieve his dream, and his typical
sense of humour is wonderful. I'm not sure how accurate this portrayal
of Burt Munro is, but the screen character is engaging and pulls the
audience in for a solid 2 hours as we watch Burt battle with his
demons, and the lack of people's belief in his achieving his goal.
This famous quote is partialy mentioned in the film
"It is not the critic who counts, not the man who points out how the
strong man stumbled, or where the doer of deeds could have done them
better. The credit belongs to the man who is actually in the arena;
whose face is marred by dust and sweat and blood; who strives
valiantly; who errs and comes short again and again; who knows the
great enthusiasms, the great devotions, and spends himself in a worthy
cause; who, at the best, knows in the end the triumph of high
achievement; and who, at worst, if he fails, at least fails while
daring greatly, so that his place shall never be with those cold and
timid souls who know neither victory nor defeat." Teddy Roosevelt
All Stumps will find kinship with Mr. Munro and reinvigorated enthusiasm for the work we all must do.
J. Curtis Kovacs, M.D. <kovacs2@cox.net>
Sun City, AZ USA - Tuesday, March 07, 2006 at 15:52:31 (GMT)
William
McCraw...Stumps 'R Us Certified Prosthetist Wayne Koniuk of San
Francisco Prosthetics says to correct the clicking, "First check that
all screws have locktite and the correct torque.
If that does not work they should make sure the tubeing is cut square.
After that you have to start replaceing parts until the problem is solved".
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Friday, March 03, 2006 at 13:48:46 (GMT)
Currently
my prosthetics are covered by Workmens Comp however Workmans Comp will
soon settle my claim. I want to be done with them completly as soon as
possible.
I am a service connected disabled vet however the amputation is non-service connected .
I have recently applied for Health care for which I was told my legs
would be covered by the VA. I am looking for other prior military who
have a service connected disability that doesn't include their
amputation to advise me on what to do.
I need your help.
Thank you.
Lutz, FL USA - Tuesday, February 28, 2006 at 13:35:04 (GMT)
It's Here-THE AMPUTEE SURVIVAL GUIDE!!
This 28 page hand book, including photos, has been prepared and
distributed thru the Barr Foundation, a non profit organization,
dedicated to helping amputees in the USA and abroad.
http://www.oandp.com/resources/organizations/barr/barr-donate.htm
It is specifically designed and targeted exclusively for folks
facing the possibility of amputation surgery, their families, recent
amputees (and their prosthetists, physical therapists and surgeons )
and all people, to specifically understand and better deal with
amputation, proper hygiene and caring for their residual limb and
prosthesis, as well returning to their daily activities after limb
loss.
You will be provided with specific information regarding
amputation, caring for your residual limb, prostheses, returning to
daily activities and a variety of other topics.
It will also offer you encouragement from others who have traveled the same
road.
It is our hope that this booklet will assist you and your family in
adjusting to and coping with the loss of limb or limbs and to help you
attain your fullest potential.
<
Remember,the human spirit is not dependent on nor determined by your physical inventory.
<>
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Saturday, February 25, 2006 at 15:28:39 (GMT)
Dan
Sorkin...If you haven't seen this article I thought it might interest
you and might be posted for all the other stumps to read.
~ FROM WEBMD HEALTH ~
Laser Prevents Diabetes Amputation
A laser technique that uses cool ultraviolet energy to restore blood
flow to blocked arteries may help people with advanced diabetes avoid
one of the most devastating complications of the disease -- amputation.
Navigate here for more information:
http://www.webmd.com/content/Article/118/113117.htm
~ LEARN MORE AT WEBMD ~
We invite you to visit WebMDHealth, designed to help you and your family enjoy healthier lives.
At WebMDHealth you'll find instant support and feedback for your
health concerns, Live Events and Chat hosted by Medical Experts, the
latest Medical News and more! Visit us online and become a member of
the WebMD community! http://www.webmd.com
WebMDHealth is committed to your privacy. For more information
please visit - http://www.webmd.com/who_we_are/privacy/default.htm
WebMD's Address:
WebMD Inc., c/o WebMD Office of Privacy, 1175 Peachtree Street 100 Colony Square, Suite 2400, Atlanta, GA 30361
Gordon Fike <gordonl.fike@verizon.net >
Atlanta, GA USA - Friday, February 17, 2006 at 17:04:56 (GMT)
Jim Street...You may have an "excellent" prosthetist BUT he has yet to fit your socket "PERFECTLY"!
Unless it is a perfect fit you will continue to have problems
whether it is a $30,000 C-leg by Otto Bock or a run of the mill
standard prosthetic.
Keep working on adjustments with your Certified Prosthetist until the fit in ALL areas is perfect.
There is no reason on Earth that your C-Leg should cause you ANY discomfort.
DanSorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Friday, February 17, 2006 at 14:08:52 (GMT)
I have an excellent prosthetist who has years of experience but the
c-leg is relatively new and rare (because expensive.) I was lucky
enough to get one but I don't think my prosthetist has much experience
with the special pressures that are put on the end of the stump,with a
suction socket, when walking up and down hills and down stairs .
Are there any c-leg users out there who know what I'm talking about and have some solutions?
I get rubbing of the skin at the end of the socket in the back
(where I can't see it without a mirror) and there is a pressure point
right at the top about an inch from the end of the stump. He fixed one
like a couple of months ago but this "pressure point" showed up almost
right away.
The sores have been bad enough in the last week, so that I've got
to keep my leg off as much as possible to let them heal. It happened
after a long downhill walking outing.
It seems like there are pressure points or places of friction of
skin against socket, that are only there when walking down stairs or
hills and are possibly 75% less friction when walking up hills.
There is usually no friction at all on flat surfaces. This makes me
think my problems come from the lack of experience of most prothetists
with the c-leg ( Actuallly, I'm hoping this is the case so there will
be an easy solution that he doesn't know about!)
My prosthetist has recently installed a ramp in his office but that
didn't seem to help with this problem which is worse than it was before
fixed the smaller problem (before he had the ramp.)
Just wondering if there is something special he has to do for a
c-leg or if it is just a matter of making adjustments until he "gets it
right."
Thanks
Jim Street <amp-l@u.washington.edu>
USA - Friday, February 17, 2006 at 13:59:02 (GMT)
This posted information is on behalf of Russ Thomas, Ertl amputee and a horse wrangler from Ohio.
Read Russ's inspiring story on www.ertlreconstruction.com under the link Ertl Pages i.e. sub link Ertl Amputees
My name is Russ Thomas. I am a 44 year old male who is 2 and a half
months out from my ERTL procedure. I would be very interested in taking
part in an exchange of information through an e-mail list. It would
also be no problem sharing my story on your website. One of your
website profilers, Melynda Schnee has been communicating with me on a
regular basis, and forwarded this information to me. She has been a
tremendous help and if I could ever help someone by sharing my story I
would love to. Any way I can help, I would be glad to.
Thanks for your consideration,
Russ Thomas
DanSorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Tuesday, February 14, 2006 at 20:10:39 (GMT)
Bobbie
Hodge on Working Out...I'm getting old. Pushing the weight machine
(example 204 lbs 12 reps on the leg press) and I just can't do it every
other day. Need 3 to recover from heavy work out, so I'm alternating
with the swimming.
Got a brain storm to increase the leg contribution to swimming. Got out
the old SCUBA swim fins. Cranked out 1000 yards in 26 minues.
Listen to your body.
It will tell you how far to push. "No pain No gain, simply is not true. Pain is God's way of telling you to "cut it out."
Pain is not the equivalent of effort. No effort, no gain is closer to the truth.
J. Curtis Kovacs, M.D. <docbabe4u@yahoo.com>
Sun City, AZ USA - Tuesday, February 14, 2006 at 02:20:49 (GMT)
The
following is from an answer provided by Dr. Will Ertl, in Aug 2005,
regarding a question about Bursa Sac asked via the "Ask the Ertls" page
of
http://ErtlReconstruction.com
A bursa sac can develop over the end of a prominent object after it
gets irritated. This can occur in natural, uninjured, non-amputated
joints. In amputees, sometimes the distal end of the tibia gets very
prominent, irritated and the bodies response can be to form something,
anything, to protect that area. At times, a bursal sac will develop.
This is essentially a fluid filled area filled with inflammatory fluid
from chronic irritation of that specific area.
The exact mechanism, to my knowledge, is not entirely understood. But
the end result is a frustrating situation for the patient.
A possibility of why this occurs is the chronic movement between the
tibia and fibula when these are not stabilized. Bridging the tibia and
fibula can prevent this chronic movement and hopefully diminish or
remove a source of irritation. Further, the end of the limb can now
become end-bearing allowing the amputee bear weight on the end of their
limb and utilize the remainder of their residual limb to support the
prosthesis.
Essentially, the prosthesis can then become an extension of the residual limb instead of some place to put a prosthesis.
DISCLAIMER: Ask the Ertls is an ErtlReconstruction.com feature designed
to provide general information. It is not designed as a "second
opinion" source for the initial diagnoses of individual health care
providers. It is certainly not intended to take the place of your
personal physician - should you or one of your family members have a
medical problem, always consult your own physician for diagnosis and
treatment.
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Thursday, February 02, 2006 at 16:07:35 (GMT)
Johnny
Cimmino in Hastings, MN...The Otto Bock "C" Leg is commonly on sale on
eBay for from $5000 to $7000, a lot less then the $19,000 invoice price
from Otto Bock.
DanSorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Thursday, February 02, 2006 at 13:12:17 (GMT)
Johnny Cimmino in Hastings, MN...Stumps 'R Us Certified Prosthetist Wayne Koniuk of San Francisco Prosthetics says,
"The knee I see here is usually very safe and difficult to fall with. This knee has a small BUMPER in the front.
Under this BUMPER there is a small SHIM that controls the locking
power. If the knee gives way causing the fall the SHIM should be
removed.
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Wednesday, February 01, 2006 at 03:46:12 (GMT)
I am in need of some information from the readers of this site.
I am wondering if there are any other amputees out there that have
developed a "bursa sac" at the tip of their tibia at any time. I am a R
BKA and have had
3 in a one year period. I need to find out if there are any others out
there that have had this same problem.
Please e mail me if you have, I am researching this as my Ortho Surgeon
is trying to tell me that I am the only amputee that he has ever seen
develop these.
Please help me by just a short e mail on if you have experienced having one. Thank you.
Also to John Cimmino, I know where you are coming from, if you ever
need to talk or want to chat with someone about your troubles, e mail
me and we can get together to chat. I am a 36 y/o R BKA for almost 2
years, and I live in Oakdale, MN....20 minutes north of you. I'll cheer
you up :)
Thanks Dan
Kimberly Peterson <kjanepeterson@hotmail.com>
Oakdale, MN USA - Wednesday, February 01, 2006 at 03:34:07 (GMT)
John Cimmino in Hastings, MN...I need to know what type of knee & foot you have in order to help.
In the meantime in order to find a support group contact the ACA (Amputee Coalition of America) at
www.amputee-coalition.org
< good="" luck<="" b="">
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Tuesday, January 31, 2006 at 13:31:39 (GMT)
I
lost my right leg above the knee in Sept 2005 due to a blood clot. I
have been using my crutches or walker ever since. I do have a
prosthetic leg, but I can't seem to get the hang of it.
I fell twice outside because it wasn't locked in, so now I keep looking down at my leg to make sure it's locked in.
im on medicare, bluecross. the people who made this leg said I can't have a c-leg. do you know how that works?
is there a group or organization that helps? im just turned 49, im living a sheltered life now.
I want to live again.
thank you
John Cimmino <johncimmino@webtv.net>
Hastings, MN USA - Tuesday, January 31, 2006 at 13:27:15 (GMT)
Congratulatios on a fantastic site and newsletter - love the wonderful 'attitude'!
I am a 53 yr old female with an AK amputation from two years ago. I
have used a basic model prosthesis (affectionately named bruce) on my
left leg for around a year, one with a strap around the waist and 'lip'
at top rear, worn with a woolen sock over the stump... a pretty basic
model.
I have for the past two months been trying to adapt to a new type
of prothestic leg, (an upgrade I'm told) using a vacuum system - full
contact?
After many different fittings (yes i'm a female and yes my body
shape changes daily, if not hourly!) I am still having problems fitting
into the leg properly and seem to somehow break the vacumn within a
very short time (15 minutes is my best time so far.) This usually
happens during walking - and while I appreciate that the sitting and
standing 'air fart' is something that can be controlled with practice,
I didn't expect the vacumn to fail while walking.
I don the leg by using what looks like a wind-sock made of
parachute type material, put over my leg, then pulled through the
prosthesis to form the vacumn. I have only or twice, out many daily
attempts, felt that my stump is fully 'in' the leg.... there seems to
be a one inch gap at the bottom.
I've had the prothesis made bigger once and adapted three other
times and have now reached a point when I wonder if this type of
prosthesis is for me.... it's so frustrating!
Can anyone who uses this type of prothesis offer any advice?
I'm seriously thinking of going back to old 'bruce' even though the
waist strap drives me crazy and the mode of walking looks and feels
awkward with little control ... at least it stays on. I was so hoping
the new 'bruce' would allow for better control and maybe even allow me
to discard one of my walking crutches!
Any help greatly appreciated.
Cheers
Liz <bluemoonllama@yahoo.com.au>
Sydney, Australia - Sunday, January 29, 2006 at 13:15:47 (GMT)
NATIONAL CALL FOR COMPETITORS FOR THE 2006 O&P EXTREMITY GAMES
Amputees will have the opportunity to compete in the first-ever
extreme amateur sporting competition for individuals living with limb
loss or limb difference. The O&P Extremity Games by College Park
will take place July 28-30, 2006 in Orlando, Florida. Individuals 13
years of age and older are eligible to compete in various amateur
sporting competitions, including rock climbing, wakeboarding,
skateboarding and BMX -- for a $25,000 cash purse and other prizes.
For more information or to register, visit www.extremitygames.com.
O&P Extremity Games Event Planning Team
Rose Raus <rraus@trsg.net>
Orlando, FL USA - Thursday, January 12, 2006 at 00:53:45 (GMT)
Graciela
Tranzillo...Pardon the pun, but I used to keep a "foot" stool nearby to
use as a step up to crawl back in my chair. You may be able to have two
steps built that you can climb up, or three if you need, just making
sure they are sturdy.
Then I would back the chair up against a wall, with the steps in front
and climb in. The best solution though is to always maintain your upper
body strength not to get in those compromising situations. I spent
twenty minutes on the filthy floor in a public restroom, before I was
motivated enough not to ever be in that position again.
Just dont give up!
Angela Briguglio <skutchey08@yahoo.com>
Santa Rosa, CA USA - Wednesday, January 11, 2006 at 14:52:32 (GMT)
I
am writing to ask if you are aware of any device that I can purchase or
build that will allow me to get back into my wheelchair when I fall to
the floor.
I am a double amputee (above the knee).
Since, I gave up on wearing and using prothestics, my strength is not
what it was. I've fallen three times and twice I was able to pile
pillows to hoist myself up to a chair then to the wheel chair. The last
time after two hours, I finally gave up and called the police who
responded and boosted me back into my chair.
Perhaps someone reading the Guest Book could suggest something.
Thank you
Graciela Tranzillo <chela60@optonline.net>
USA - Wednesday, January 11, 2006 at 03:53:16 (GMT)
ErtlReconstruction.com's
newest sub link, "Ask the Ertls" provides communication between
physician, patient, physical therapist and prosthetist.
Questions and opinions of bursa sacks, bone growth within muscle
tissue, providing proper blood supply, osteomyoplastic amputation and
reconstruction surgery and Ertl limb post op protocol, are some of the
many issues discussed on links available at www.ertlreconstruction.com.
The site, which includes "Ask the Ertls", "Suggested Reimbursement
Codes" for physicians performing the procedure, testimonials and video
footage of Ertl recipients, physicians, and prosthetists, has generated
over 95,000 inquiries from around the world.
Tony Barr
Barr Foundation
www.oandp.com/barr
www.ertlreconstruction.com
Tony Barr <t-barr@t-barr.com>
Boca Raton, FL USA - Wednesday, January 11, 2006 at 01:48:25 (GMT)
Andy
Marso in Kansas City, KS...The cretin you were listening to on the
radio was a barbaric, insensitive, immature moron. The shallowness of
his revealing statement about not being able to date, "a cute girl if
she was missing an arm" dooms this yahoo to a gender specific shallow
creature much like himself.
Pity this poor loser.
You did precisely the right thing in confronting this double digit IQ.
Should this pseudo on air talent ever lose a limb he will find it
difficult if not impossible to hook up with anything less than a local
zoo animal unless he grows up.
Quadruple amputee Alan Fisk is our Stumps 'R Us Athletic Director.
Alan has no problems with the opposite sex as does EVERY member of
Stumps 'R Us have no problems sexually. We are almost all married,
dating or looking.
I am a B/K amputee and married my present wife AFTER I had my
amputation. We are celebrating our 25th Anniversary in October of this
year.
Check out our mission statement. We consider ourselves slightly inconvenienced...nothing more.
Happy New Year!
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Wednesday, January 11, 2006 at 00:28:41 (GMT)
I
became a quad amputee about 18 months ago after a bout with severe
bacterial meningitis. I lost all my fingers except my right thumb and
the front half of both feet. In addition I have extensive scarring,
skin grafts and nerve damage on my lower legs and forearms.
The recovery process is going well for me. I'm 24, I have
a college degree, I'm living on my own, working part-time as a
newspaper reporter. I can walk, with the help of AFOs and toe fillers
and drive normally. What I'm mainly finding is that, although my
friends and family have been great, I really need some emotional
support from someone who understands life with limb differences.
Case in point: Yesterday, while driving home, some disc jockey was
talking about how he knew this girl who he thought was really cute, but
was missing an arm. He went on to say that he would never date an
amputee and that, if you're an amputee you should consider everyone
with four limbs "out of your league."
Now, being a single 24-year-old who hopes to someday still have a wife
and family, this really upset me. I called in to the radio show and got
into it with this guy (which, in hindsight, was probably exactly what
he wanted -- conflict is great for ratings).
He told me I was being too sensitive and that he was just stating reality.
I maintain that he was being a jerk and has no idea what he was talking about.
I feel like I've always had a pretty good sense of humor about
myself and that I am fairly comfortable making light of the situation
I'm in, even though I'm still less than two years removed from life
with four normal limbs. But this guy just really made me angry.
Was I right to be offended and angry at this guy's comments or should I have just laughed them off and gone about my business?
Andy Marso <andrewmarso@yahoo.com>
Kansas, KS USA - Wednesday, January 11, 2006 at 00:08:51 (GMT)
Kimberly
Peterson in Oakdale, MN...If you don't have a harvested bone bridge
between the tibia & fibula you don't have an ERTL Procedure. Also
the nerves, capillaries and other associated items should have been
buried in soft tissue to protect against further trauma.
I have Cc your E-mail to Tony Barr of the Barr Foundation has a
very close working relationship with the ERTLs at Kaiser Hospital in
Sacramento, CA. Tony will get in touch with you and accelerate the
process of getting you to Dr. ERTL or someone truly QUALIFIED to
perform the ERTL Procedure.
Please don't do anything about the bursa sacs until you hear from Tony Barr.
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Sunday, January 08, 2006 at 13:26:57 (GMT)
I have a question, that I would like to "throw" out there.
I have been a RBKA since 05/04. Since that time I have developed 3
different bursa sacs at the tip of my tibia. My surgeon, that did the
amputation, removed the first two, last one being removed in 09/05, and
have now had another one since 12/05. My surgeon stated that I am the
only person that he has seen to develop these. I find that hard to
believe.
Before my amputation, I researched the ERTL procedure and requested
that my surgeon perform this. He stated he knew it and would do it. I
have this suspicion that he did not perform the procedure, even though
it is clearly stated in the operative reports. My first hint and clue
being that there is no "bone bridge" what so ever connecting the tibia
and fibula. The x rays don't lie.
Would the ERTL procedure have prevented this?
I sent my medical records to Dr. W. Ertl, in 11/05, but never heard anything back.
I found this Vascular Surgeon in Minnesota. He stated that he is
certified in the ERTL procedure but has his own additional
modifications of the procedure. He stated that the bursa sacs should
have not been removed, they are supposed to be there, that's why I keep
regrowing them. They are supposedly for extra "cushion" of the tibia.
WHO DO I BELIEVE?
Has anyone had any similar experiences?
Are there any doc's out there that can help me with this?
I guess it wouldn't be that big of a deal, however, they hurt like
crazy. I want to have the ERTL procedure still, as that was my wish in
the first place. I have so much nerve pain and phantom pain in my limb
that I'm about to the end of my wits. With the pain of the bursa sac, I
am not walking properly and this, subsequently, is causing TREMENDOUS
pain in my unaffected side.
It is too hard, living in the wonderful "Artic Wasteland" that
Minnesota is, to use my crutches to remain off of my prosthesis. I fell
4 times last month from the crutches slipping on the ice and wet
floors.
By the way, are there any products out there for crutches that would
eliminate the possibility of slipping on wet floors or icy surfaces?
Enough rambling, I guess I am looking for any information that I can
obtain on these bursa sacs. I need to make a decision about another
surgery ( which would take me up to 16 so far) whether on having this
removed or not and to or not to proceed with having the ERTL Revision.
Thank you in advance for your help, you are all a great group of people.
Kimberly Peterson <kjanepeterson@hotmail.com>
Oakdale , MN USA - Sunday, January 08, 2006 at 13:25:11 (GMT)
It is right, proper and wonderful to be questioned.
If your doc can't explain well what he suggests be very, very cautious.
Curt Kovacs, M.D. <KOVACS2@COX.NET>
Sun City, AZ USA - Friday, January 06, 2006 at 15:21:56 (GMT)
I
would add to Dr. Kovac's answer...Use only Anti-Bacterial soap like
SAFEGUARD or Lever 2000. Be certain the stump is completely dry before
putting on your stump socks.
DanSorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Friday, January 06, 2006 at 15:16:04 (GMT)
Joe Kennedy...I addressed this is the enlarged version of my first letter.
The only places needing soap are under arms, and between the legs. These can also be cleaned with rubbing alcohol.
THERE IS NO NEED TO SOAP THE WHOLE BODY AND USE HOT WATER.
Only people doing hard physical labor, loggers, miners, heavy equipment operators need to bathe daily.
This doesn't describe most of us.
The College of Dermatology says, "In general, keep the skin lubricated.
Apply oil such as Neutrogena body oil or Alpha-Keri oil to the skin at
the end of ones shower. Vaseline is even more helpful if not too
greasy. Do not take more than one bath or shower a day. Use lukewarm
water, as hot water dries out the skin. When toweling dry pat, don't
rub. Blot the skin so there is still some water left on the skin. Soap
irritates and dries the skin, so keep it away from the eczema.
When bathing limit the use of soap to the face, armpits, genital area, and feet (STUMPS)."
Curt Kovacs, M.D. <KOVACS2@COX.NET>
Sun City, AZ USA - Friday, January 06, 2006 at 15:12:53 (GMT)
Gail
Campbell in Tucson, AZ...In addition to the allergic reaction, you want
to make sure the stump is very clean. Ingrown hairs are especially
previous to the onset of a blister.
I went to the dollar store and picked up a knuckle brush you can get
with suction cups on the bottom. Exfoliate the area when you clean it.
An ounce of prevention is a ounce of cure.
CA USA - Friday, January 06, 2006 at 04:44:14 (GMT)
Dr. Kovacs...Sorry but had to post this if..
I agree with you on the easing up on the showers to preserve those much
needed oils in our body like our fore father puritans to prevent drying
out but how do you avoid reeking like a water buffaloe and turning
heads everywhere you go if you skip a day in the shower????
CA USA - Friday, January 06, 2006 at 04:36:48 (GMT)
Ed Good in Pittsburgh, KS...Tony Barr of the Barr Foundation in Boca Raton, FL may be able to help. Tony's URL address is:
http://www.oandp.com/edge/issues/articles/2003-05_11.asp
His E-mail address is:
t-barr@t-barr.com
Tony's Foundation is the only referral I have for you.
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Friday, December 30, 2005 at 23:25:18 (GMT)
I
apologize, I sent something to you for posting at another email
address. I am a relative newcomer to your site and enjoy it very much.
I hope someone out there will have some things to offer for my
situation.
My name is Ed Good and I am a recent (Sept. '05) AK amputee,
currently living in Pittsburg (Southeast) Kansas and near Southwest
Missouri. I am able to drive and work, and need to work to support
myself (single, no kids) and keep a roof over my head. Because of this
I do not qualify for any Federal or State assistance in helping me
acquire a prosthetic. No private insurance either. I have tried to go
through Vocational Rehabilitation, but all they are interested in is my
quitting my current job so that I can get the job they want me to have,
in order to claim me as a success. Only after I am being considered for
another job, will they decide whether or not I need a prosthesis to
perform it, before aiding me. The key is they, too, expect me to go
without a paycheck while the program is in progress.
I cannot get a loan because of a bankruptcy started in 2004 that I
had to have filed this year, shortly after my amputation. I"m trying to
go through Limbs For Life Foundation, however, cannot find a
prosthetist who is willing to participate, because they can't collect
their full fees. I am expected, somehow, to make up that difference, up
front, not in payments. I am about at my wit's end trying to figure out
where to turn next.
I was hoping somebody out there might have some insight into what I am
going through and maybe give me some ideas about funding for a
prosthesis.
Ed Good <drmusic6672@yahoo.com>
Pittsburghks, USA - Friday, December 30, 2005 at 23:22:58 (GMT)
Gail
Campbell in Tucson, AZ...It sounds as if your stump is allergic to the
rubber like insert. A simple change to a WOOL STUMP SOCK should solve
your skin problems. A GOOD Dermitologist should be able to confirm the
allergic reaction and prescribe a salve or cream to clear up the
irritation.
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Friday, December 30, 2005 at 01:17:50 (GMT)
I
keep getting blisters on the bottom of my stump and on the side. I have
had so many adjustments to my socket that it looks like a patchwork
job.
My socket, which was new last year, does not allow my stump to go down
far enough in the socket to prevent my leg from slipping out.
I have not had any increase in weight and don't understand what is going on.
My prosthetist keeps shaking her head and that can make a person
nervous. It seems that my stump keeps changing sizes and is really
creating a problem, any suggestions.
I am presently wearing a full leg rubber-like thing
Gail Campbell <joecamel1@cox.net>
Tucson, AZ USA - Friday, December 30, 2005 at 01:05:20 (GMT)
Dear Vickie...Allow me to continue on the dry skin and what to do about it.
I used to live in Minnesota. Especially in Minnesota and especially amongst women it was common to see extremely dry skin.
WHY?
The Puritans were wrong.
Cleanliness is NOT next to Godliness.
People bathe too much. They use the hottest water they can stand. And they soap all over.
Except for the places where skin touches skin (under arms &
between legs) and especially oily areas -- face, neck & behind
ears. THERE IS NO NEED FOR SOAP.
Reduce how often you bathe or shower, and use lukewarm water. Showers may be better than baths.
Apply an emollient liberally and often, particularly after
bathing, and when itchy. The drier the skin, the thicker this should
be, especially on the hands.
Curt Kovacs, M.D. <KOVACS2@COX.NET>
Sun City, AZ USA - Monday, December 19, 2005 at 22:12:33 (GMT)
Dr.
J. Curtis Kovacs...Nice to have you on the flip side. It was nice to
read your remarks. Coming from a man of your statue it was nice to hear
your pledge.
If I could make a request it would be to spread the word and your
experiences to your fellow medical professionals preferably in the
field of orthopedics. The more they know coming from a fellow MD the
more they can help us. I, as many patients feel, a lot of what we are
telling our Doctors are going in one ear and out the other leaving it
up to us to try and figure things out. My thoughts are if these Doctors
heard genuine experiences from one of their own they would be more
likely to do more research into their diagnosis and prevention of
ailments associated with amputees.(ie Phantom Pain, Skin Break Down,
Blisters, Bursas, Spurs, Pressure points, Ingrown hairs,...the list
goes on)
Please spread the word and please Share Your experience .
Thank you for the genuine offer to help us!
Chatsworth, CA USA - Sunday, December 18, 2005 at 15:11:45 (GMT)
Victoria...In general "water" based lotions are drying. Intuitively sounds wrong but it is.
EDAP with Vitamin A & D is good. Ointments hold moisture in.
Urea containing products such as UREMOL are excellent.
There is a silicone based lotion ALPS skin lotion.
Sorry for the delay.
Curt Kovacs, M.D. <KOVACS2@COX.NET>
Sun City, AZ USA - Sunday, December 18, 2005 at 14:41:42 (GMT)
Hello...I'm
a Physical Therapist working with a number of amputees at my new job.
Are water-based lotions OK to use on the residual limb (AKA "stump")
for treatment of dry skin? If so, what brand do you recommend and where
can I purchase some--any medical suppliers?--for rehab patients?
Vic Wright <vicwright@yahoo.com>
USA - Saturday, December 17, 2005 at 15:10:27 (GMT)
Dear Fellow Stumps
I want to introduce myself. My name is Dr. J. Curtis Kovacs. I am
retired, but I was a Board Certified Family Practice and Emergency
Medicine Physician.
More than forty years ago I commuted to college and medical school
in Chicago. I found Dan Sorkin first on WCFL and then WAIT radio. Daily
I was ushered into the world of jazz and aviation by this magical
raconteur. Dan had the best music, best guests, and greatest flying
stories. Daily I would chuckle as he slurped his, “rich, hot, black,
flavorful, steaming, delicious coffee.” He kept me sane and
entertained. I learned at his knee.
I was learning to fly and listening to his stories of flying around
the world and popping down to South Bend, IN for Notre Dame football
games. He helped me dream high. I think I did pretty well. I hold an
Airline Transport Pilot Certificate and once held airplane, instrument,
and multi-engine instructor certificates.
About 5 years ago while searching for an aviation author to thank
for my years of flying I found THE CHIEF STUMP'S email address and sent
him an email, “Hello across the decades.”
Although he responded, “I don’t usually respond to unknown emailers…”.
what has ensued is the most wonderful friendship (via email).
I have occasionally helped with Stumps contacts that had questions I could address.
About 15 years ago my hip joints began to disintegrate. Being naturally
conservative I “toughed” it out. Finally I needed a wheelchair to
maintain the hectic volunteer schedule (VA and hospice) and travel. Why
didn’t I have them fixed right away? I was so young ( 50 ) that had
they been done at that time I’d need to have them redone 10- 15 years
in the future. Also I was newly married to the most wonderful “Lucy”,
and I wasn’t willing to accept the operative risk of dying and leaving
her.
Two weeks ago I had the first hip replaced.
I learned first hand what many of you have experienced. I think if
you’ll accept this explanation you might accept me as more than an
honorary Stumps member.
I had an amputation. But it was the proximal (top) end of my femur. I have a prosthesis, but it is buried and hence invisible.
What hit me most was the difficultly of learning to walk with only
one leg and my arms while the bone knits to the implants. Lying in my
rehab bed, I was struck by how first-hand experience is so much more
than even deep professional knowledge.
I pledge to be a better, understanding more responsive Stumps
member and resource. Be assured as I heal I’ll be at the computer and
knowingly respond to fellow Stumps.
And I seal this with: from The Cremation of Dan McGee, “Now a promise made is a debt unpaid
J. Curtis Kovacs, M.D <docbabe4u@yahoo.com>
Sun City, AZ USA - Thursday, December 15, 2005 at 02:19:37 (GMT)
For Your Information the Marlo Anatomical Socket (MAS) is not new. See this URL for full details:
http://www.oandp.com/edge/issues/articles/2002-11_01.asp
DanSorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Wednesday, December 14, 2005 at 22:00:00 (GMT)
I am a right AK and just participated as a patient model/guinea pig in a clinic for the Marlo Anatomical Socket.
While my prosthetist was not there, one of his partners was. When I
go in for my definitive (hopefully (C-leg) I will ask for this socket.
It really seems to be very comfortable and secure.
I just wanted to pass this along
Richard Morgan <Richard.Morgan@steelscape-inc.com >
Longview, WA USA - Wednesday, December 14, 2005 at 21:53:02 (GMT)
Ed
Donnelly in Discovery Bay, CA...CP Wayne Koniuk at San Francisco
Prosthetics (415) 861-4146 has had a lot of successful experience with
HD amputees. He is Stumps 'R Us primary consultant.
DanSorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Tuesday, December 13, 2005 at 23:31:55 (GMT)
Hi Angela...I'm a left HD and also had excess bone growth problems ( I forget the fancy medical accronym for this).
My amputation was due to trama and done at UC Davis med center in
Sacramento. They did an OK job, but HD's are pretty rare and they did
not have a lot of experience with them. When I was transfered to Walter
Reed Army hospital in Washignton DC, the first thing they asked was if
I had raditation treatment.
I said no.
The X rays confirmed I was already having problems with the bone growing back where there was no limb.
A very painful surgurey ensued, but the day after, I was in the
radiation dept of the hospital getting zapped. It is pretty much
standard procedure for military amputees to go through this to avoid
problems with prosthetic issues later on.
I havent had any bone problems since, although I must admit I don't
use my prostheitc either. For an HD it seems more trouble than its
worth to me, but I haven't had access to a CP here in California yet
who knows how to deal with the special socket required.
Good Luck!
Ed Donnelly <itsed65@yahoo.com>
Discovery Bay, CA USA - Tuesday, December 13, 2005 at 23:27:08 (GMT)
I
would like to share my experience with re-occuring bone spurs, in the
hope that maybe I can spare a fellow amputee the experiences I have
had.
I was already a high double AKA, but I managed to learn to walk and was
just mastering things like curbs, and thresholds, when one day, while I
was off my legs, I felt a pain like no words could describe. It turned
out to be a bone spur, resembling an antler on a five -point buck. It
burst blood vessels, and tore muscles before any doctor could figure
out what was wrong. By the time they did, I lost an inch of bone off my
5 inch stump and ended up with permanent surgical clips in the back of
my leg.
The next thing I knew, there was one growing on the other side. I
sought different medical care, as I was not happy with the results of
the first surgery. By the time I found a competent surgeon, another one
grew back on the other side.
He took both of them off, and I only lost 1/2 inch that time. I thought
I was in the clear, but within the next year, two more appeared.
I was then blessed to find Dr Jan Ertl in Sacramento. He was
challenged by the mess I presented him with, but he agreed to help me.
I had the Ertl procedure on both legs, he removed a bunch of skin
grafts and although he had to remove a lot of soft tissue with damaged
nerve beds, leaving me almost a hip disarticulate, he built me a soild
base for my prosthesis.
I tried to walk again, but could not keep a leg on my short side. I
even had trouble sitting. When I sought help at UCSF and Stanford for
the seating issues, nobody knew what to do. But the "Stumps"
prosthetist, Wayne Koniuk of San Francisco Prosthetics came to my
rescue with his creative thinking and custom molded me a cushion.
A month ago, while transfering, I felt that old familar pain, shoot
through my stumps. I did not want to believe it at first, and after the
Ertl procedure, this wasn't supposed to happen, but one set of X-Rays
confirmed my biggest nightmare. A pointed "dagger" is growing off each
of my stumps.
The first doctor at Stanford, with tears in his eyes, said he had never
seen this before , and didnt know what to tell me. But he did ask me if
anyone had ever talked to me about "radiation" treatment.
I said no, I have never discussed that with anyone.
He referred me to a bone cancer specialist at Stanford, who finally
seemed to have a solution for me. This Tuesday he is going to take off
the"daggers", remove my sciatic nerve, and then the following day, give
me low doses of radiation in both legs. He said this is my best shot
and wished I had seen him 5 years ago when this started, because he
could have given me a better chance than I have now, not to become a
torso.
There is also a medication I have never heard of they will give me to
try and stop it. He said the Ertl procedure was a "nice try", and I had
some beautiful work done by him, but it doesnt always solve this
problem.
I spent a moment, angry and pissed at all the doctors I had seen,
but then I realized, they are only human beings underneath those white
coats, and they all did the best they could. I didnt lose my legs to
cancer, so why would any of them think to try this.
So if you are facing the same problems, I hope this information may
spare you an inch or two and give you the insight to keep seeking the
help you need in places you wouldnt normally look.
Best Wishes To All for the Holidays !!!!!!!
Angela Briguglio <skutchey08@yahoo.com>
Santa Rosa, CA USA - Tuesday, December 13, 2005 at 00:33:27 (GMT)
Dear Mady...Joining Stumps 'R Us ($30 a year) insures four things when you live out of state:
1) You support the good works of Stumps 'R Us
2) You receive the quarterly mailing of our newsletter GIMPY
3) You are invited at the member rate to our monthly events
4) You help pay for the web site maintainence fees, telephone, postage and printing costs
No one at Stumps 'R Us is salaried including me.
I hope that answers your question.
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Monday, December 05, 2005 at 01:25:00 (GMT)
Since I live in NYC do I need to pay the subscription fee to join?
Hugs
Mady <madybp@aol.com>
New York, NY USA - Monday, December 05, 2005 at 01:17:42 (GMT)
Dear Karen...I just read your post on Stumps are US.
Please know that the same thing happened to me. I had four other
sockets made by a different prosthetist and none of them fit very well.
I tried a different prosthetist, who used a pin to suspend the socket.
Previous attempts to use a pin suspension [by the old prosthetist] had
to be changed to a lanyard, because donning the socket took far to long
and was extremely frustrating. My new prosthetist cut a small round
hole in the base of the socket. This allows me to get the pin in
position and thus makes getting the socket on much easier.
You’ll find that this is quite a well accepted and utilized process to help amps with donning.
While it was problematic to get the leg on the first few days,
afterwards this new pin socket fit very well. In about a week I got
very good at lining up the pin and getting the socket on easily and I
was liking the new socket very much, usually getting on with the very
first try. Problem was that the prosthetic limb was too long in
comparison to my sound leg. In an effort to rectify the limb
difference, my prosthetist had to place a shorter attaching pin on the
silicone liner. With this shorter pin my limb would not fit into the
socket far enough to catch. In an attempt to rectify getting my limb
down farther into the socket, so it would catch on the shorter pin, he
cut a spiral slit into the soft flexible liner that fits in the socket.
He then told me the same story about putting the flexible liner on the
stump and then donning the hard socket.
You are quite right, it takes some other person to apply the liner to
the amputee in this way. In my opinion, this shows that a prosthetist
cannot empathize with the true needs and effects of the situation. You
are quite right the prosthetist wants to do the best that they can to
give the patient the best leg that they can, but when things don’t go
right it then becomes a question of money. They want you to be happy
but they also need to show a profit. Understand that you need not
accept everything that you are told. Also understand that you the
amputee and the prosthetist are both on a learning curve. The both of
you are looking for what works well for you.
I being seasoned by a few years and having learned that nothing holds
true in all situations, bulked back at him right away when he tried to
tell me that I could don the flexible liner first, that that was not
going to work in reality, I told him. He insisted that I had to try. I
left very upset and unfulfilled. Mad that things were going down hill
again and tired of all the setbacks. I tried once to get the liner on
his way, it did not work and I never tried it that way again. I tried
leaving the liner in the hard socket and did get the pin to attach. It
was hard at first but within a week it got easier. I think that my
stump probably shrank some, with the time that had elapsed, making
things go more smoothly.
It’s very normal for most newer amputees to have limb shrinkage. While
things eventually worked out for me to be able to get the leg on, had I
not been able to overcome and get the leg to fit in a reasonable time
and effort then I believe I would need to do what I could to teach my
prosthetist that this configuration was in no way acceptable. He needed
to make changes so that I had a leg I could don in a real time frame
and by myself. And if he did not see things my way he was never going
to see any repeat business from me and I would tell everybody who was
an amputee that I know of, the poor service that I received. Putting it
in a letter and sending it to not only the prosthetist, but the company
executives as well.
Lets face it he’s not making a new leg for you because he needs to keep
profits high for his company, if you can effect profits by denying him
business, that too affects his company’s profit, and they will likely
be more willing to make any necessary changes. Do understand though
that a prosthetist has only so many things he can do. Each prosthetist
has a repertoire of things he/ she has learned that work. He / she
cannot be held accountable for something he/ she has not learned. Each
amputee is unique. Not every amputee will be a text book case. You will
find that, if you have a caring prosthetist the more he interacts with
you, the better he becomes at fitting you well. On the other hand if
you are not seeing success then you may wish to search for someone else
who can demonstrate more ability in fitting someone with your
individual issues.
I know a man who is a double amputee who flies from Virginia to
Florida to have his legs made by Copeland prosthetics, because he
cannot find anyone near him that can do a good job.
PS: It may not be necessary to make a new socket, your prosthetist
should be able to change from the pin suspension to a lanyard system,
that may be easier to attach.
http://www.amputee-coalition.org/inmotion/sep_oct_01/primer.html
Figure # 6 shows different kinds of suspension..
I’m curious, please let me know is your prosthetist located in Fairfax Va.?.
There are so many different techniques that not every prosthetist will
be familiar with each and every technique. As a amputee who is not a
textbook case very many different things have been tried on me, by
prosthetist that swear that it will work, that it worked on other
patients, but when applied in my situation it failed completely. I went
though about 10 different techniques just to try to keep the liner from
rolling into the socket. All failed until I got this socket which fits
higher and closer to the body. No one after three years and getting
input from somewhere around twenty prosthetist, and trying as many
purposed solutions has made a suggestion that stops the leg from
rotation with use.
The spiral cut in the liner while unusual and rare does seem to be
applied to some patients. The only problem I had with the cut since I
just leave it in the socket and ignore his well intended, but stupid
and insensitive instructions to put it on before hand, is that when he
made the starter hole to the top and bottom of the spiral to keep it
from tearing more, a small amount of plastic remained, leaving a tiny
buildup. As my leg shrank more some movement occurred over the two tiny
holes with the build up, this led to blisters. Shaving off this tiny
build up residue left the liner surface smooth again and the spiral was
never a problem again.
Fairfax, VA USA - Saturday, December 03, 2005 at 15:59:33 (GMT)
Cheryl
in Downey, CA...There is no reason in the world why you, a B/K amputee,
cannot return to swimming for fun & exercise. That goes for cycling
as well. I have been a L B/K amputee for more than 30 years. I swim,
cycle, fly airplanes (I'm an Instrument Flight Instructor), dance and
do EVERYTHING i did before the amputation EXCEPT run fast. If I really
wanted to do that I know I could do that too.
Your Certified Prosthetist can make a waterproof leg for you so you
don't even have to remove it to swim. I don't have one but one memberof
Stumps 'R Us does. I just don't find it necessary.
I remove my prosthesis next to the ladder going into the pool and
enter the water by sliding in. To exit the pool I use the pool ladder
to haul myself out being sure to leave a towel on the prosthesis top to
protect the socket and to dry the stump before putting the leg back on.
I did some cycling last year in Oregon. Not much...perhaps 5 or 10 miles. NO PROBLEM.
The limitations on what you can do are up to you.
DanSorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Friday, December 02, 2005 at 18:06:01 (GMT)
OK,
my turn to seek some assistance! I was reading about the "Stumps" pool
parties, so I think someone out there can answer my questions.
Situation: My physical therapist wants me to accept the "fact" that
I should give up swimming for good now that I'm a BKA! I lost my lower
left leg in March... am getting around well for "everday" things with
my prosthesis and am starting to work on being active for activity's
sake (as opposed to just moving in order to "get somewhere.") I'm NOT a
"jock" type... I'm a plump middle-aged gal who enjoyed mild hiking,
cycling, and swimming/water aerobics prior to the onset of the foot
problems which led to the amputation. I want those activities back in
my life to the greatest extent possible!
My PT is very encouraging on the "walking/hiking" front. He's
ambivalent about cycling -- encourages me to use a stationary bike as
often as possible, but goes strangely silent when I bring up the
question of bikes that MOVE. (And I KNOW that cycling amputees
exist--just don't know one personally yet!) Swimming and pool
activities are real sticking points with him... says they are "too
dangerous" for someone with my "combination of conditions."
I admit that I DO have a "combination of conditions" and that this
may mean I have to get creative in how I do things... but there must be
a "way" that will work for me. There are two main challenges: the
missing leg and the fact that I have trouble with bleeding in my eyes
if I strain too hard with my upper body. The eyes are actually of more
concern to me than the leg at this point. Because of them (and lousy
upper-body strength), I can't just heave myself around with my arms.
I've also never developed the "knack" for getting around on crutches --
sans prosthesis, I use a wheelchair or "hop" with the aid of a walker.
My PT's opinion is that this makes it "impossible" for me to get in and
out of a pool without a special "lift" to lower me in and raise me out.
MY opinion is that this is caution-to-a-fault!
I think it ought to be possible for me to use any standard pool
with steps and railings. My idea is to place a chair near the pool
steps, remove my prosthesis, slide from chair to ground, crawl and/or
"butt-walk" to the pool steps and lower myself in on the seat of my
pants, one step at a time.
Getting out would be the same process in reverse. At one point in my
foot-troubled past, I lived in a second-floor apartment and learned to
climb stairs on my rear end -- 15 of them, mind you -- and then
transfer from the landing at the top of the stairs to a chair, from
which point I could stand up without upper-body strain. Why shouldn't
this work just as well in a pool?
Okay... That's my "problem": How do I solve it? I know it's
December, but Spring is coming and I want to be ready when it does!
(And I want to have some "ammunition" when I see my PT next week!)
Thanks for any input others may have for me!
Cheryl Newcomer <cmnewc@hotmail.com>
Downey, CA USA - Friday, December 02, 2005 at 17:52:47 (GMT)
My
husband lost his arm above the elbow in 1997. He has accomplished many
great things with his disability. However, we recently had a baby girl
and with that, several issues have came about.
When she was first born he was able to pick her up, change her diaper,
and feel comfortable while holding her with just one hand. Our daughter
is almost 5 months old and my husband is finding it difficult to do
everyday things with her.
I was hoping that somebody who has also lost their arm and has had
children might be able to help us with some problems we encounter. For
example, changing a diaper while the baby squirms, holding her with
confidence, picking her up while providing support for her back...and
probably many other things that we will come in contact with.
Thank you!
Valerie Pierroutsakos <valerielvcats@yahoo.com>
St. Louis, MO USA - Wednesday, November 30, 2005 at 23:27:58 (GMT)
Karen
Woodward somewhere in the USA...I have Cc C.P. Wayne Koniuk of San
Francisco Prosthetics (he is my Certified Prosthetist) in order to get
a professional answer to your question.
In my opinion your husband has an incompetent moron as a prosthetic
technician. The whole object (once again in my humble opinion) is to
create a device that is not only comfortable but is easy to put on.
What your "technician" has done, if I understand you correctly, is an
attempt to cover up a botched fitting.
The "technician" should either create a new socket or repair the damage done to the one your husband has now.
Dan Sorkin <Dansorkin@gmail.com>
SFO, CA USA - Wednesday, November 30, 2005 at 20:41:03 (GMT)
My
spouse has the C knee. And has had trouble with the socket fitting
properly. This last visit to the prosthetic person, they cut a slit in
the liner and a hole out of the socket itself. He was told to take the
liner out of the socket, put in his leg, pull on the screw and kind of
center it. Then put the liner with his leg in it into the socket. Is
this a normal turn of events for putting on the socket. Or is this just
another ploy to get around making a new one.
When he was with the prosthetist, he was able to get it on this way
because he lifted his leg while they pulled on the screw and then it
went on okay. Now at home, he sits down to put the liner on, and
because he has to sit on the liner and pull the screw, it does not work
at all. Sitting on the liner does not allow him to get the adjustment
the prosthetist was able to do, because he could lift his leg for the
doc; however, he cannot balance himself long enough to do it on his
own. So he cannot get it into the socket.
I hope this makes sense.
Anyway he wanted me to ask if this is a normal routine procedure that you have heard of.
Karen Woodard <kwoodard@ustaxcourt.gov>
USA - Wednesday, November 30, 2005 at 20:37:36 (GMT)
Lilie
in Calif....I know that it's hard to imagine now, but by the holidays
next year, you're
VERY likely to be up and around and back to your "normal" routine!
That, at least, has been my experience. I'm 50, live in SoCal on my
own, and lost my lower left leg last March. During the holidays last
year, I was hobbline
about in a walking cast with a left foot which was slowly destroying
itself.
I was in constant pain, had repeated infections in the foot, was
constantly spiking fevers, and despaired of ever feeling "normal"
again. By late February, when they told me that I could try one last
time to repair the foot (which would have been my fourth major surgery
on it in one year, and which they could not promise would be
successful) or consider amputation and an end to the pain, I chose to
go with the latter.
It was hard... I can't deny that. And it took a LOT of adjustments
in my life, both small and large. But this Thanksgiving, I hopped in my
car, drove to a friend's for dinner, got up early the next morning,
picked up another friend for breakfast out, and we hit the malls. I
walked -- yes, walked, without pain -- for the entire day. Did not get
home until 7:30 last night... and the reason I "packed it in" then was
that my RIGHT foot was sore and tired! It was a completely, utterly
NORMAL day, and it was
wonderful. And in three more weeks, I'm flying up to your end of the
state, on my own, to spend Christmas with my sister and brother-in-law.
Your next few months are going to be challenging as you go through
the process of getting your prosthesis and learning how to use it. I
spent just over three months in a wheelchair full-time while I waited
for my "new leg."
The training and "break-in" period was alternately thrilling and
frustrating. But getting my "final" prosthesis, just last week, was a
revelation to me: I now KNOW that I can be as active as I want to be.
While YOU'RE working on reaching that point, try and be gentle with
yourself, and try to do anything you CAN do to keep your "normal"
holiday routines and traditions.
Are you good enough at transfers to get in and out of your car? If
so, your hubby can take you out to see the holiday lights, or to church
if that's your thing, or to a show. A wheelchair can be wheeled up a
short staircase,
if necessary (you DO need assistance with that one), and most public
transportation has lifts or ramps and wheelchair bays for handicapped
passengers.
How far away is your family? Can some of them visit you? What about
hosting a holiday get-together for your friends and neighbors... let
THEM come to YOU if it's hard for you to get out to them! There are
lots of ways to "make it through" this year... and next year can be a
whole different story for you.
DO find people to talk to. My prosthetics tech is an amputee
himself and has been a wonderful source of support and practical tips.
Look into support groups, where you'll be in touch with people who DO
understand what
you're going through. And if you want to "talk" (e-mail) to me, please
DO!
I'm determined to get as much good out of my experience as I can, and I'd be glad to share what I've learned.
Take Care...
Cheryl Newcomer <cmnewc@hotmail.com>
Downey, CA USA - Tuesday, November 29, 2005 at 16:51:47 (GMT)
Lilie in Northern California~Amputation is one of the biggest life changes you can experience.
There are different kinds of amputations and there are different kinds of people,
and this is exactly why you will react in your own way. The reaction will depend on the situation
and circumstances of the amputation, your personality and the amount of support you get.
There are many amputees out there and the reason why you haven't noticed them before is because
most do not draw your attention. They look and act just like any other people, and they can
do anything they want to do. The difference is that most have had to rearrange their lives
at some point and change some of the old ways to find new meaning and create an adjusted image
of themselves. They may also do things differently from those who have all of their limbs,
but you will discover that they can do everything they want to. Some amputees are born missing a limb,
others lose their limb because of life threatening disease, and a small proportion have accidents
leading to amputation. You probably thought you were alone and it's most likely that you have never
known another amputee. You might also be frightened at the turn your life has taken. After a while
you will realize that you have joined a strong community, and although it is not a community you
wished to join, it offers great support and involves diverse people from all walks of life.
You will need to rearrange some things and your thoughts, but you are still the person you were before
and you know so much more. You have lived through an experience that is so overwhelming that most of
us cannot imagine what it is like. By reading this text you have already taken a big step towards your
recovery, and there are thousands of people in the world who share your feelings and experiences
and are willing to help you.
And Stumps 'R Us is a EXCELLENT start.
Always ask questions if you are unsure or don't understand something. We are always here for you
Chatsworth , CA USA - Sunday, November 20, 2005 at 22:43:18 (GMT)
My name is Lilie and I am, a new amputee. My right leg below the knee was amputated in June of this year.
I still don't have my leg and therefore I am in the wheelchair all the time with just transfers from
the chair to the bed or the toilet.
This is a real adjustment for me and some days I just sit and cry. No one really understands what I am
going through even though they are there for me. I get discouraged and depressed and sad too.
It is bad now with the holidays here. I am a family person and would always spend the holidays
with my Mom, sisters and their families. It won't be that way this year because no one has a ramp
and I cannot hop up steps with just one leg. So my husband and I will spend the holidays alone
and in our small studio.
Well, what I am looking for are some friends to talk with and email who are going through the same thing,
someone who will understand. I am 44 years old and I live in Northern California.
Looking for new friends,,,please email. Thanks!
<>
Lilie <LRoonikins@aol.com>
CA USA - Saturday, November 19, 2005 at 22:03:01 (GMT)
Marla
& Perry...I don't know where you are in the state, but I just
received email from a representative of the Amputee Coalition regarding
support groups. She knows of one in Olympia, and others further north.
I live in SW Washington and was looking for one in this area. If you
are close, maybe your friend would be interested in joining a new one
in the area?
Rick Morgan <rickanddev@yahoo.com>
WA USA - Friday, November 18, 2005 at 04:06:02 (GMT)
Deborah
Coonrod in Omaha, NE....
Hooray! Congratulations on:1) Having the ERTL Procedure
2) Standing up for yourself in the Hospital
3) Spreading the good news about the ERTL Amputation Procedure and your
success with itPlease keep us up to date on your progress.
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Thursday, November 17, 2005 at 22:17:40 (GMT)
I
haven't written in the GUESTBOOK for quite sometime. Deborah Coonrod R
B/K amputation. I had the ERTL procedure done this last January. It's
good to see there are doctors getting involved in this site. As an
amputee you have to speak up when people do not treat you right. When I
was in the hospital in Ohio having the ERTL procedure, I was awakened
in pain hearing a nurse yelling at a patient next to me. I told her,
"you should not be yelling at that patient". I also told her I was in
pain and needed something for it. She told me to wait and she would
take care of things. She proceeded to leave the room. The patient next
to me was also in pain. I waited awhile and no one came. I buzzed the
button and still no one came. I called the nurses station and they said
there was a little comfusion but someone would be there soon. No one
came, so I called Dr. Poka's office and explained to them what was
going on. They put me right thru to Dr. Poka. He told me not to worry
he would take care of it right away. Within a few minutes their was a
nurse with my med's and the other patients med's also. The other
patient thanked me for my help. The next morning Dr. Poka came in and I
thanked him for his help. He ask me if I would talk to the head of
nurses about this. Well I did and I also requested that that nurse not
be allowed in my room while I was there. Everything worked out. I
didn't see that nurse again and we got the service we should of gotten
in the first place. So SPEAK UP FOR YOURSELVES, YOU HAVE RIGHTS, YOU'RE
HUMAN BEINGS.To the doctors out there, I am trying to get my doctor to
go to Ohio to watch the ERTL procedure, then he could do it in our
area. Any sugestions on how to approach him? I have an appointment Nov.
27.
Deborah Coonrod <debc328@msn.com>
Omaha, NE USA - Thursday, November 17, 2005 at 22:13:43 (GMT)
I
live in Washington State and have a very close, diabetic friend break
his arm and a week later had his right leg amputated above the knee. He
has a good retirement and his mother helping to manage things for him.
His insurance allows 30 day post-op hospital stay which is up today I
think and then who knows what.We all need help in finding help with his
insurance, finances, and general support. His mother is elderly and not
really well herself.Thanks a lot for anything you can do.
Marla & Perry <chefperry90@hotmail.com>
WA USA - Monday, November 14, 2005 at 22:39:15 (GMT)
Fran
Haller in Frederick, MD...The best place to find the information you
are looking for is the ACA (Amputee Coalition of America). Their toll
free phone number is: (888) 267-5669Their E-mail address is:
editor@amputee-coalition.orgTheir Internet address is:
http://www.amputee-coalition.orgGood luck!
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Monday, November 14, 2005 at 22:36:50 (GMT)
Do you know of any support groups for leg amputee's in Maryland? We live in Frederick, MD, but would be able to travel.
My neighbor had amputation below the knee and is having some difficulty.
She would like to share her experience with another person in her situation.
Thanks in advance,
Fran Haller <fran@hallers.net>
Frederick, MD USA - Monday, November 14, 2005 at 22:32:44 (GMT)
My
Name is John W. McKelvey, retired Electronics Engineer. I came across
your web site while searching for Prosthetic sleeves, socks, liners
etc. I have my left leg amputated 7" below the knee due to a Staph
infection in the Artificial Ankle I had installed in 2001 by Dr. Lavine
in Sioux Falls, SD. I get along well with the Prosthetic device which
was made locally. I also have RA for the last 40 years, now Gout also.
I was purchasing all supplies through the maker of the Prosthetic
device, however his wife, who is also office manager decided to totally
insult me, so why should I and Medicare + BC/BS support someone who
does not appreciate the business. I would like to find a new source of
supply. Any recommendations would be greatly appreciated. Thank you!
John W. McKelvey <webmaster@bettysprettypunch.com>
Sioux Falls, SD USA - Wednesday, November 09, 2005 at 23:13:48 (GMT)
Hi, my name is Donald Compton MD ret.
I have followed your webpage for a few years and it was one of the ways
that i found Dr. Jan Ertl in my quest for resolution of the troubles
with my left leg(and in the future my right leg). I'm now a happy bk
amputee.
I see all the postings of your websites readers and it makes me angry
that so many people are mistreated by physicians and the system that it
almost makes me ashamed to have been in the profession.
I really would like to help as much as possible.Obviously I cannot give professional advise but can contribute as a peer.
Donald Compton MD ret <Finstodlef@aol.com>
USA - Wednesday, November 09, 2005 at 19:10:38 (GMT)
Tara Isaacs ...I've been following your posts and have a few concerns about all these events.
I assume your boyfriend is still in the hospital and under nursing
care. It seems that your boyfriends doctors are very concerned and want
very much to do what they think is the absolute best to restore his
health.
I am a physician(ret) and a recent amputee and have been on both sides
of the knife. Unfortunately many MD's think and live in a medthink
world that considers amputation the most awful and end of the world
event that could ever be done to a person. I never thought that way for
the 25 years I treated patients for all manor of illness and injury. I
recently chose to have a chronically ill leg amputated using the Ertl
procedure( by Dr. Jan Ertl) and could not be happier with the results.
I'm now learning to use a prosthesis and am surprised to discover how
easy it is.
I found also after talking about my sick foot to many doctors who
should be kinder( including some I scrubbed (operated with in the OR)
with and was just about shown the door, that many quietly admitted that
my chosen course was the best and was the same one they would follow if
they faced similar problems.
Tara; I hope you will communicate with me and all the other concerned
individuals and amputees who post on this website who really want to
help everyone facing this life-changing event. We hope that nothing but
good things could result.
By the way; where are you located?
Donald Compton MD ret <Finstodlef@aol.com>
USA - Wednesday, November 09, 2005 at 01:09:37 (GMT)
My
brother just lost his left arm at the shoulder. He is an active
outdoorsman and I would appreciate any advice for getting him back to
his favorite fishing hole. I’ve looked up fishing harnesses etc. but
would like ideas for tying lures etc. with just one arm.
Carla McGarvie <carla@rossandcarla.com>
Seattle, WA USA - Wednesday, November 09, 2005 at 00:56:28 (GMT)
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