Amp U T chat is for amputees.
[amputee/_private/headerb.htm]| VOLUME 2 # 17 | FEBRUARY 26, 1996 |
IN THIS ISSUE
1.) NOTES FROM John & Joyce
You will notice that today's issue includes an attached file. That is because the text we have to share was too long to put in the main body of the newsletter. Most of you subscribers should be able to download this text file (it is in plains ascii text so that even Mac users can read it with out odd line breaks.) with little difficulty. If you have any difficulty downloading and opening the file please email me and I will send the supplement in a separate email.
((The supplement includes the "snippets" I pulled as a sample of the new AOL online area, as promised in last weeks newsletter.))
OLD BUSINESS:
Last weeks "NOTES..." generated several pieces of email regarding amputees in mass media. Most frequently noted was the omission of "THE FUGITIVE." Bet we could name a lot more, don't you? This remains fresh in most our minds, but also it should be realized that while film has only been with us for the past 75 years, historically the amputee image has suffered, dare I say, in antiquity?
A friend of ours mailed us the name two suggested books by Thomas McCall: A WIDE AND CAPABLE REVENGE, ISBN # 1562828649 and BEYOND ICE, BEYONG DEATH, ISBN # 0786860227. They are both published by Hyperion, and unfortuantely only available in hard bound, according to the book store I deal with. I'm going to check with The Inter-Library Loan system and see if I can chase down a copy. :)
Friends, from another listserv was good enough to post some further reading on the subject, herewith:
"Snow Falling on Cedars," by Guterson and now available in paperback. One of the characters is an AE (in the war) and there is some stuff about people mentioning it and not mentioning it. There is also a presumption that it has >something to do with how the character thinks of himself.
Several issues back NOTES was about VOLUNTEERISM. On February 12th ABC EVENING NEWS with Tom Brokaw did a report on the same subject in their American Agenda segment. ((See Thomas, [grin] I told you this happens to me alot!)) They reported the decline in volunteers across the board, mentioning specifically The League of Women Voters and BOYSCOUTS of America. Social scientist say that this is because of increased time spent watching TV and computer addiction, secondarily because of the time constraints of two income families.
One group was sited as being a response to dimishing volunteer ranks is "VOLUNTEER ATLANTA." This was described as a "volunteer pool." Volunteers are listed with the managing service and when an organization needs volunteers, VOLUNTEER ATLANTA matches the people to the task. (Sounds like a "volunteer coordinator" don't it?--[grin])
NEW WEB SITE:
O&P, today announce it's very own web page. :D
http://nersp.nerdc.ufl.edu/~pprusak
CRUTCH USERS
John recently spoke with Thomas Fetterman regarding his wide selection of canes crutches and accessories. If you are looking for a particular item he can most likely supply it or aim you in the right direction. His catalog includes wheelchair accesories, grips, mono skis, etc. and hard to find items. Thomas is a crutch user himself and it was a pleasure speaking with Tom.
You can reach THOMAS FETTERMAN, Inc. at:
PO BOX 174
SOUTHAMPTON, PA 18966-14514
(215) 355-6941
ASK DR. DOOLITTLE
This isn't earth shattering, but it is interesting. Driving our son to school the other day I saw one of the "local legends" of our community. I thought you might be delighted to know that this legendary citizen has 3 legs. This beagle ["Tripod"] has been a fixture at the end of our street ever since we moved here 5 years ago. No one has ever told us his name but rain or shine the three legged dog is merrily *trotting* around LEADING his cohorts (most often a golden retriever and a mixed breed.) [chuckles go here] Mrs. Mason, on the corner, groused one day that they (he) was wearing a path in her lawn. Sure enough there was a grass-free rut right through her lawn. I've seen this dog anywhere in a mile radius. He gets around! He's got "street smarts" and he is very aware of traffic; not only does he watch out for cars for himself, he also guards his companions.
Being from the "Bluegrass" I also heard a news story about an amputee race horse. (This was perhaps a year back--before I was keeping notes on such things. So, unfortunately I don't have the specifcs.) The horse was fitted with a prosthesis and was shown running around the track. He didn't have the speed and control of his pre-amputation days, but he got around VERY well, thank you, and was part of a test for prosthetic research. [[NOTE: This horse was not destroyed because of his fine blood lines and it was the intention of the owner to continue breeding him.]]
If any of you have more information about this race horse please email me. :)
That's about all we can squeeze into this week's newsletter. Have a great week!
~~John & Joyce
2.) "LETTERS TO THE EDITOR"
Over the last week we had a correspondence with a member of the mailing list, by private email. I'm going to include the exchange here, edited, because it may be of help to others.
February 19, 1996
To: John
I am a BK amputee- last April, surgically because of poor circulation. Was scared to death and my surgeon (vascular) could give me much guidance.
Long story into short, found a GREAT prosthesis organisation at a GREAT company called ______ (they had two BK amputees working there) and they led me through the whole deal from before the surgery to the walker to the "training wheels" leg to the CCIII that I now have. They also directed me to a wonderful MD who specializes in amputee rehab who got me back on my Schwinn airdyne (arms only) and got me swimming (an exercise I never was into) and gave me independent therapy goals etc.
RESULT: I am a totally successful amputee, after ten months totally mobile and back to work traveling- mostly driving (left foot accelerator- lost my right leg) and am back being productive and unhampered.
MORAL: THERE IS "LIFE AFTER AMPUTATION".
What is my motivation now? I want to give back some of what was given me and help some other people who are as scared as I was and don't know where to turn.
Through your underground network, if you see any opportunities, let me know.
I live in Atlanta, but travel regularily to Memphis, Nashville, Birmingham, Mobile, Knoxville, Chattanooga, and the Florida Panhandle.
Regards and keep up the good work !
B. L.
Dear B. L.
We're happy that your experience with __________ was a positive one. Not all the companies have such a good "rating." But it will depend on the employees from location to location, and the situation of the individual amputee.
You might be interested to know that there is an ACA publication about starting support groups. Also, Jack Richmond in Florida has a large group and a publication.
B., you should talk to your doctor/surgeon and prosthetist for ideas and ways that you might assist others as well. Peer visitation is significant in pre and post-op and can make a difference, even if it is not evident right away. Meeting someone that has successfully adjusted and adapted is a positive experience, but you should also be mindful that circumstances vary...there are some that will not be as successful --you should be prepared for that.
The vascular event that you and John experienced is a different situation from others in that: you (and John) expected that it may be coming; that your physical condition might make amputation inevitable. But you will also encounter trauma patients; THAT is another "ball of wax."
You see, they had no time to think about "it," prepare for "it." They woke up one morning and began to go about their daily activities--boom, trauma--boom, hospital bed--boom, they wake up and something is missing... :(( ...While the intense pain, anger/fear--their lives changed forever, may be similar, the extreme shock is not.
You would be smart to talk to a consulor that works with trauma patients before too long, not just for the sake of you helping the amputees, but also for your own sake, in that you are prepared for all the reactions you may encounter working with amputees. When you encounter an amputee that is going through this experience, you are going to expose yourself to all those emotions that are tearing through them. They need to and *will* express this to someone that feels "safe" to be angry at. In other words, they may be reluctant to give their anger to their doctor because "pissing" him/her off might be detrimental to the care they receive. Expressing it to their spouse/family--well, they might be in fear of losing loved ones and care givers--you might become the neutral "punching bag" for all their negative energy...and that might be just what "they" need. It may not, however, be what you need or can tolerate. So, I just think that a little preparation work along this line will be valuable to those you speak with and yourself.
While we understand your enthusiam for ________ and the wonderful care you receive(d) from them, you haven't been to ALL of their facilicites--you can speak securely on the one you have experience with. When "meeting the public" John found it is best to maintain objectivity and preserve credibility by not stressing one facility or product too heavily. It will sound like commercialism and you will alienate some of the people you wish to help. When John gives a lecture (and other lecturers we have seen and/or know from the list abide by this ethic as well), he does not mention the prosthetist, surgeon, "group", or component he uses...unless and until, someone asks. Then John makes it clear that his "experience/components are 'such and such' but YOU (and the health professional) should select who and what you want/need based on the best information you can get." It's sort of like doctor referrals. John won't tell them who to use, but when asked, "who's your doctor?" or "who do you use?" that is a different matter and that is when you can credibly mention ______.
[[Mention only the actual facility that you have direct experience with, as it is possible that there is a mediocre ________ office somewhere out there. For example: I have had people tell me how good Shoney's resturants are and I have told people how we like Po'Folks. Then they go to, or we go to, a Shoney's/Po' Folks at a different location and the food is just awful and the place a pig sty. :(( ]]
John also says to tell you:
Don't be discouraged by the politics of the medical field. They have a tendency to put their financial interests first, and patient care second. For example: You may find a hospital very eager for your services, but if a different chain works through them, the doors may mysteriously close. OR
they may want to DICTATE exactly what you're supposed to do/say. Amputee policy set by non-amputees :-/ pfffffffffft
~~Joyce & John
February 21, 1996
To: John
Great response and very good ideas! Thanks for taking the time and for alerting me to the trauma situations- didn't think a great deal about that- related more to my experience where I had a month to seriously contemplate the event (and come to terms with it)(I'm a GREAT believer in the mental attitude/physical reaction syndrome).
Even though I have had a number of vascular related surgeries, I'm such a hopeless optimist that after heart by-pass (6 pipes) and two fem-pops (and two reconstructs), I assumed all was well and that was the end of that! So, I too have little time to mentally and emotionally deal with whatever was facing me.
I feel that preparation and pre-op counseling is probably of limited value- the poor guy (or gal) is so confused and emotionally unstable that they probably wouldn't hear alot of what was being said.
I am convinced of the value of post-op counseling and letting the person know exactly what (good or bad) is coming at them (inconvenience, pain, callouses on your hands from the damn walker, the "shrinker trauma"), AND MOST IMPORTANT....there is light at the end of the tunnel and the tunnel is not that long !
Just wanted to share my very positive experience with you and get to know you better-you are doing a great job and I wanted to participate within the constraints...[personal stuff deleted trust us :) this guy works hard!]
Not much time to do anything but keep on keepin' on!
Regards,
B.L.
(NOTE: Bob, that's what we all must do "keep on." We know that you are going to help a lot of people. Even with the demands of your own life you have a desire to help others and are set to go out and do something. Bravo!)
THE ADVICE (DISCLAIMER)
Please be sure to read the information at this link at least once.
4.) HINTS AND TIPS
TIPS
Upper extremity
On my body powered unit I have a quick change wrist so I can switch between my hook and my mechanical hand. I have found that the quick disconnect cable has occassion to "pop" loose. (Both the hook and the hand have a short cable attached to them, which attaches to the main cable.) A short piece of rubber tubing, slid onto the meeting cable's swivel keeps the two cables connected.
Lower extremity
The peg leg is "alive and well," at least, for certain applications. Talk to your prosthetist about having something made like mine. My "work" leg is made on a socket, with a standard 30mm pylon and a crutch tip. While something like the "Terra" foot, is much better, the crutch tip, inexpensive and readily available. PLEASE remember that this set up can be very unstable! I use mine because I got tired of getting my foot caught on the underside of automobiles when I work on them.
Have a hint, tip, or suggestion? Please email us and we will consider it for use in the newsletter.
5.) QUOTE/THOUGHT FOR THE DAY
"Fear cannot be without hope nor hope without fear."
--Benedict Spinoza
© Copyright February 26, 1996 J. Meyer. All rights reserved.