can you help?

can you help?

Dear Colleagues,

The following is what the O&P Profession is all about, can you help?

Al Pike, C.P………..


Subj: HP/HD Help
Date: 98-08-13 18:02:22 EDT
From: <Email Address Redacted> (Christina)
To: <Email Address Redacted>

GREETINGS TO ALL HEMIPELVECTOMIES AND HIP-DISARTICULATIONS!

      I'm Christina, post hemipelvectomy for 36 years. I use a prosthesis
full time and walk with no aids. After my amputation at age 15 due to a
recurrent fibrosarcoma, I completed my education and became a Doctor,
practicing Anesthesia in Southern California. I had made a successful
recovery and transition to the real world, I had nothing to do with the
amputee world, never even met another HP, my life was completely normal...
or so I thought. Suddenly last year I was unable to walk, the leg no
longer fit properly. After many years of being a successful
hemipelvectomy, I again had to face all the realities, fears and anxieties
of a new amputee. Even with all my knowledge, education and experience I
was desperate for support and information, and had many unanswered
questions. I realized that if I had such a difficult time getting the
information I needed, how hard it still is for a new HP or HD to get the
help and support we all need, not only initially, but throughout our lives.
 In the process of finding a new prosthetist and getting a new leg made, I
learned how to use the computer, found and joined the ACA, and the AMP L
support group, which has changed my life.
     Since I've come out, I've found many other individuals with our
level of amputation, through the Internet and other sources, so far over
26 of us, ages 11-87. Almost weekly, someone new finds me, all needing
information, advice and support. No longer should we exist in isolation,
EACH of you has something to share with the others, so I'm now asking for
your help to change this situation for the benefit of us all.
     I'm creating a Web-site specifically for our high level of amputation,
hemipelvectomies and hip-disarticulations only. This will be a cyber
space support group, which I hope will be a resource of information and a
network of individuals who are willing to share the benefit of their
experience. I want to keep it simple, specific to HP/HD, with practical
advice covering all subjects of import for us. YOU ARE THE EXPERTS, I
NEED YOUR INPUT to make this worthwhile. The following is a basic outline:

1. THE LIST: This will be the basis of our network support group. If
your are willing to be a participant, please send me a short bio with your
first name, age, how long you've been an HP or HD, where you live,
profession, hobbies and how you've coped with life, whatever you feel is
relevant. Pictures are welcomed (head shots or full body, spouses,
families and pets, be creative). Personal privacy will be protected, no
last names, addresses or phone#s will be on the list. Provide only that
personal information you feel comfortable in sharing. E-mail addresses
are optional, only if you are willing to be contacted by others, but since
networking will be paramount I hope you'll comply.
2. PROSTHETICS: Important concepts of fabricating a prosthesis for an
HP/HD. How and where to find an experience CP. This site will be NON
COMMERCIAL with NO ADVERTISING. However, this information is obviously
important to all of us, therefore only references or recommendations from
you, the members will be accepted regarding specific prosthetists,
companies, components or other related products. Pictures of your
prostheses are encouraged. Show and tell; show us what you've got, tell
us what you like and don't like.
3. PHYSICAL FITNESS AND EXERCISES: As well as advice about the
importance of stamina, conditioning, strength, balance and weight control
for both walking and crutch use. Sports and recreation. The scoliosis
issue. Input from physical therapists is welcomed.

4. WALKING: Although this may not be the goal for all, advice from the
walkers. Free access to videotapes from commercial sources as well as
private individuals.
5. HELPFUL HINTS: The simple things, those we've learned about coping
with daily life, including advice about dressing, bathing/showering,
toilets, transportation, driving, traveling, etc. Any and all suggestions
are needed.
6. LIFE WITHOUT A LEG: Geared to those who've opted not to use a
prosthesis. Crutch options, sitting sockets, wheelchairs. What works,
what doesn't.
7. SELF ESTEEM AND MOTIVATION: After such a devastating surgery, how
we've managed to cope. Your personal opinions
8. FEEDBACK. QUESTIONS AND ANSWERS: Will be posted on the site on a
regular basis. Hopefully you'll actively participate to share your
knowledge and experience with others. All suggestions, topics and opinions
from HP/HD's are welcomed, as well as family members. Devotees and
weirdos are NOT welcome and will be discouraged and ignored.
9. LINKS: To appropriate sources of information will be available, such
as the ACA, or I-CAN, as well as personal web-sites if you wish to provide
the URL.
10. FOR THE PROFESSIONALS: The advice and knowledge of appropriate
interested Doctors, Prosthetists, Physical and Occupational Therapists
and others is welcomed. This works both ways, hopefully we, the experts
will be able to teach those professionals who impact our lives.

It will take several months to compile, organize and edit your feedback, as
well as composing and programming the web site. For those folks without
scanners or easy computer access, please send pictures and relevant
information to the address below. Photos will be returned upon request.
Feel free to share copies of this message with other appropriate
individuals you might know. I earnestly hope you all will join with me to
help create a worthwhile endeavor.
Sincerely,
Christina

Christina Skoski MD
HP/HD HELP
P. O. Box 25033
Santa Ana, Ca. 92799