FEEDBACK
10/12/2005
IN MEMORIAM
Since the last update, I’ve learned there have been several deaths of people who have been listed on the Support Network.
Marianne Timmerman, from the Netherlands
Although we never met personally, we became friends via e mail and her web site has been a great asset to new amputees not only in Europe, but in the USA as well. Her site is being maintained by friends, it was very informative, therefore I will continue to keep it as a link. Also, the pictures of her riding a bike will remain in the activities section simply because this accomplishment was so outstanding.
Bill Rudolph, from California
Why is it always the nicest guys who go first? I met Bill shortly before his amputation, and we maintained contact throughout the last few years. He learned how to walk with a prosthesis at age 59, and even ran a 5K on one leg and crutches! He was always willing to talk to new amputees, he was a great role model and an inspiration for all who knew him.
Lou Keyes, from Kansas City
Lou had been a hemipelvectomy amputee since 1986. Since there was no such thing as a support group for her, she went ahead and created one. She became the founder and served as President of LEAPS (Lower Extremity Amputees Providing Support). We met at the ACA convention held in K.C. in ’01. She was a delightful and dynamic person who accomplished a lot of good for a lot of people. Hopefully her support group will continue.
Sadly, there is still no cure for sarcoma, and people continue to die despite various treatments and amputation. However these three individuals are examples of how fulfilling life can be with one leg for whatever amount of time we have left. They will be greatly missed.
AMPUTEE COALITION of AMERICA
The 15th annual Conference and Exposition was held this year in Dallas, TX, August 11-13. Each year attendance increases as more amputees join the organization and this year was no exception. Record attendance for first time attendees was also broken.
In place of our usual “hip and hemi” seminar, this year tables were set up for all level amputees to meet in one large room, as informal support circles. Sorry, in my opinion and many others, this just didn’t work. Rich Friend and I, (the unofficial Mom and Pop peer support base for the high level amputee) didn’t think this concept worked well at all. There was just too much other stuff going on, not only for us but for the new amps as well. We both had other obligations and sessions to attend, so all too often the HP/HD table was left unmanned, and the room was usually empty. Although we left a bunch of printed materials, this was not the best way of making contact with others of our level.
However, this did not stop Rich, “eagle eye Dick” from inquiring of anyone who looked like a high AK or better; “Excuse me, but do you mind if I ask what level you are?” Bottom line, we did make contact with some new people, especially from the Dallas Support group, and counting the returning veterans (Julie, Toni, Rich and I), we totaled close to a dozen. New contacts and friendships were made.
A special treat was meeting Jim, from New Jersey who was attending his first convention since loosing his leg to sarcoma at age five! In 45 years this was the first time he had to opportunity of sitting down with another real life peer. His excitement and enthusiasm was palpable and he will become a part of our support network. As usual, our very cordial and friendly group ended up in the lobby lounge, enjoying an adult beverage and each others company sharing lots of laughs.
I really had a blast at the Friday night Fabulous 50’s party. There is no possible way I can describe the bunch of us out on the dance floor…..with real leg, fake leg, one leg or no legs, crutches, wheelchairs, and every combination of the above having fun kicking up our “heels”, bumping and grinding hips, ..hip, hip, hip hooray! Hip or hemi, it’s hard to describe, you had to have been there, too much fun for all who attended and yet another good reason for leaving my husband home.
Next year the ACA convention will be held in Minneapolis, MN, June 15-17. I’ll be there and I hope you will be too. Looking forward to meeting you all. For more information, check out the ACA web site at www.amputee-coalition.org or call 1-888-AMP-KNOW
TECHNOLOGY, NON-PROSTHETICS
The new ED Walker, (Ergonomically Designed Walker) is an ingenious device. This combination crutch/walker is an innovative alternative for all amputees. Hard to describe, it’s sort of a crutch you sit on as well as walk with. Due to time restraints I did not have the opportunity of trying it out personally, but know others of our level who have embraced this alternative for mobility. I admire the fact that the innovator has taken the time and energy to create something new. The full description will be found on the non-prosthetic options of this website, or click on their website for more information:
PROSTHETIC TECHNOLOGY
There really wasn’t anything new or exciting for our level regarding prosthetics. There are no new hip alternatives, although I was assured by several major companies that research is underway. The big push now is for the new microprocessor knees, and I did attend a session which compared the major 4 now currently on the market:
C-leg and
Compact knee. Both offered by OttoBock
Rheo, from Ossur
Endolite’s
Adaptive knee.
Each has specific advantages and disadvantages for our particular level, and eventually I plan to post more about these options on this web site.
IN THE NEWS
Douglas G. Smith, MD, Medical Director of the ACA has written a three part article about the higher levels of amputation published in the ACA magazine: “inMotion”. Entitled “Higher Challenges, The Hip Disarticulation and Transpelvic Amputation Levels”; Jan, March, May 2005. If you don’t have these issues, you can access and download them directly from the Internet:
http://www.amputee-coalition.org/inmotion/jan_feb_05/higherchallenges.html
http://www.amputee-coalition.org/inmotion/mar_apr_05/higherchallenges2.html
http://www.amputee-coalition.org/inmotion/may_jun_05/higherchallenges.html
I also had an article published in “inMotion”, Jan 2005. Entitled, “The Pelvic Leveler, An Alternative to a Sitting Socket”.
http://www.amputee-coalition.org/inmotion/jan_feb_05/pelvicleveler.html
I wish I knew about this simple device many years ago. Maybe it would have prevented the development of a severe case of scoliosis and my back pain. This information will be added to the web site shortly. In fact, I recently had another smaller version of a pelvic leveler made for use while exercising.
The previous information posted about the new Sabolich socket has been moved to the Prosthetic section of this site under Socket materials.
Previous updates are now being archived:
