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SUPPORT
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USA - CENTRAL REGION
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CANADA & AUSTRALIA
BILATERAL AMPUTEES &
INTERNAL HEMIPELVECTOMIES
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SALLY
(Plainfield, Illinois) 
I have been an amputee since 1981, as a result of osteosarcoma.
I wear my leg about 12 or more hours a day, and spend most of my time
working. I am administrator in a large social service organization, and
have a Master's degree in psychology. I like to travel and have had my leg
repaired in three states and once in Paris. Recently I have run into some
troubles because my prosthetist of over 20 years retired, and I am in the
market for one who has extensive experience with hip disartics and some
spirit of adventure. I don't use a crutch, cane or wheelchair with my
leg, provided that it is in good working order (lately it often isn't). I
would like to try some of the newer knee and
foot components out there, although the expense is somewhat limiting. I
am open to you posting any or all of the above info., and if I can offer
more--I'd gladly do so. I'm pretty good about answering e-mail, and I
think I might be of some help to other folks with hip disartics.
E-mail: sar35@sbcglobal.net
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MARIO
(Texas)
In 1985 while serving in the
USAF in Germany, I fractured my R hip in a low speed motorcycle
accident. This actually saved my life because while trying to pin
the hip together the doctors could see that my bone was unusually
soft. A biopsy was done which turned out to be clear cell
chondrosarcoma.
I was put in a hip-spica cast
and shipped back to the States. In an attempt to save my leg, a
partial internal hemipelvectomy was performed with metal plates and donor
bone (an ileo-fremoral arthrodesis) to hold it all together. By 1989
the plates were loose and the donor bone was not taking. After
several more surgeries, I had little function. I felt as though I
had put as much energy as I could afford into saving the leg, it cost me
my marriage and I was developing chronic pain. In 1992 I decided to
have the amputation, a hip-disarticulation which relieved my pain and
allowed me to get on with my life. I ended up as a partial hemipelvectomy
since the pelvis was removed first.
I have used a prosthesis, but
I prefer not to use it as I find it extremely labor-intensive and
uncomfortable. I move much faster on forearm crutches and even
faster in my wheelchair. To keep my good leg in shape I swim, jump
rope, fence and play tennis. My wheelchair tennis career has been
very successful, being ranked nationally number 2 in the men's A division,
and I won the mixed doubles at the US Open my last year. Now I'm pursuing
wheelchair fencing and hope to participate in the Paralympics
2000 in this sport.
I am not shy about my
"disability". Since my honorable discharge from the
service, I've remained active with many Veterans groups and
organizations. Most of my experience has been working with spinal
cord injuries and spina bifida. Over the last several years I have
been trying to concentrate more on children and have tried to make myself
available to local hospitals: MD Anderson, Shriner's and TIRR.
Now remarried and with two
step daughters, I'm a "house dad". I do lots of gardening
and have two very active dogs that keep me pretty busy. My wife and
I currently remodeling our kitchen, and in my spare time I serve on the
Board of Directors for Houston 2012 Olympic bid. Just let me know
what I can do to help.
E-mail: uswcfencer@hotmail.com
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JULIA
(Oklahoma)
I had 15 operations from
5 yrs of age until 9 yrs of age when the decision was made to amputate my
left leg.it was caused by benign desmoid tumors, that meant they took 1/2
the pelvis, 1/2 of tailbone, etc. and never gave me any support to sit up
straight, so now I have horrible scoliosis.of course, I did try a
"leg" around the age of 13 or 14 and it was a horrible monstrosity
that I named "filmore" because that was the first
"ugly" name I came up with. During my reading, I noticed that
almost all the people, especially the females, wear "legs", why?
After all this time, I am still not interested and cannot think of any
thing in the world that I would like to do that I cannot do and not have
to drag around something. I do no feel that I am blocking, I just never
cared especially what people thought.
I have been
married for 17 yrs, chose not to have any children and have worked for the
Dept. of Human Services as a social worker for 20 yrs. I use alum forearm
crutches and see my chiropractor on a regular basis. I need help to sit up at work, lots of
desk work and at the computer and that curved spine is where I tend to
have a lot of nerve pain, not daily but sometimes very very severe. No
doctor seems to be able to find a way to help me. Sorry this is so long
but I got excited now that I found ya'll, yippee!! Thanks for being there
and for the work you're doing.
E-mail: Julia.wonsch@okdhs.org
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LORNA (Missouri)
(Age 90+)
I live in Independence, Missouri and became a Hemipelvectomy
amputee due to bone cancer when
I was in my 50's, back in July 1963. After wearing a prosthetic device for 16 years, I decided not to continue wearing
one, since at that time my prosthesis was more cosmetic than functional.
I was never athletic, and preferred to get around using underarm
crutches with "Lean On Me" crutch tips.
More recently, following a fall and a broken arm, I'm even more
dependent on my wheelchair. However, Im still driving and able to do grocery shopping,
get to my various
appointments, out to eat, etc. My hobbies are cooking, sewing and genealogy. The items I
sew are sold and the money given to LEAPS to help other amputees.
I've learned
how to use the computer, and recently have been helping Marianne Timmerman,
from the Netherlands, to translate her new hemipelvectomy web site into
English.e-mail: lhilgard@kcnet.com
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LINDA (Michigan)
Im a Left HD and over
a 10 year cancer survivor. I live in a
suburb of Detroit with my husband and two children and have a transcription business out
of my home. I use my prosthesis along with a cane, but my goal is to walk without a cane
eventually and to improve my gait. Ive had three prostheses but found that by losing
some weight, my prosthesis now fits more comfortably. My present components are
the Otto Bock hip, Total Knee, and Total Concept foot. In the past I
tried other components such as the Littig strut hip and the Multi-flex foot. Id like to converse
with others
about my options for components. My prosthetist is Jerry
Vilminot, C.P.
E-mail: Ladyljd@aol.com
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STEVE (Indiana)
Im 19 years old, hemipelvectomy due to a traumatic
motorcycle accident in 1997. I live in a suburb of Chicago. After my accident, my parents
were told I probably wouldnt survive, and never walk again (the doctors had no
experience with hemipelvectomies). I proved them wrong. It wasnt easy, it took over
a year of multiple surgeries before having my first prosthesis made. I wear my prosthesis
now an average of 12 hours a day . I am a student at Purdue University and my career goal
is to become a Mechanical Engineer. Between college classes, sports, my active social life
and fittings for my new prosthesis. My prosthetists are Scheck & Siress.
E-mail: Im kind of busy, but you can reach me or my parents, Bill and Pat, at
decolores2you@yahoo.com
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RICH
(Cincinnati, Ohio)
(Hemipelvectomy)
My problems began in the late 1990's with
right hip pain. After multiple tests, work-ups and mis-diagnoses such as Pagets
disease and arthritis, I had a hip replacement done. A few weeks after this surgery,
I
found a lump in my groin.
Eventually I found my way to the Cleveland Clinic where
I had my hemipelvectomy amputation in May 1995. They found a football sized chondrosarcoma which
does not respond to radiation or chemotherapy, so it was surgery and...prayer to get rid
of the cancer.So
far, so good, I've remained cancer free since then. Back then as
a new amputee I found little support or information in my area, however I
became involved with the Amputee Coalition of America and eventually started
a amputee support group locally. I've made some wonderful friendships
with a number of extraordinary people through the ACA. My involvement
with this organization has also opened up a slew of travel, social and
recreational opportunities.
I own and run
my own business and participate in
"recreation with a vengeance" as often as I
can get away. I love to travel and
enjoy driving around the country meeting many of the amputee mailing list members and
attending classic car shows. My hobby is buying and restoring old classic cars,
and I'm always willing to try new activities such as jet skiing and
snowmobiling. Although
I've had two prosthetics, I
prefer to use crutches for mobility. I still feel like the
leg is a "bar stool" strapped around my waist
and just slows me down. I'm always willing
to talk to new amputees.
E-mail: RichFriend@fuse.net

USA -
EASTERN REGION
USA - ROCKY MOUNTAIN REGION
USA - WEST COAST REGION
EUROPE
CANADA & AUSTRALIA
BILATERAL AMPUTEES &
INTERNAL HEMIPELVECTOMIES
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