Amp U T chat is for amputees.
[amputee/_private/headerb.htm]| VOLUME 2 # 16 | JUNE 3, 1996 |
IN THIS ISSUE
1.) NOTES FROM John & Joyce
(Weather and AOL prevented us from getting this out earlier.)
After several weeks of apparent absence Joyce and I are finally back "up and running" (or in Johns case kind'a limping<grin>).--OR at least we thought we were until this evenings newest barage of storms :((
Those of you who sent us email will hopefully be hearing from us in a few days. If you don't have a reply from a previous letter, then please mail us again. We are afraid some mail may have been lost during the process of us having purchased several new computers that "crashed and burned!" (It's a bit of a long story, but a I will share with you that DIGITAL COMPUTERS has made extraordinary efforts to get us back up and online. While we think that we have found every "lemon" in the region, nay country!--the local service representative has been exemplary. We hope that this one will keep on working! (While we've made backups to various computers and diskettes, it is now an awesome task to relocate all that stored data...slowly but surely, it should eventually be recovered. We apologize for the problems and appreciate your patience and understanding.
Severe storms also kept us off-line. Not only have we been seeking the ultimate surge protector, but storms have also wrecked havoc with the phone connections, and in case you are new to computers you should be warned that lightening can also damage your computer via the phone lines (unplug those modems!) As a matter of fact, we are trying to send this out in between storm fronts. We are listening for the now VERY familiar storm warning siren. :(
[[I should also mention here that we are currently safe and sound (at least of body, if not mind {grin}.) Those of you that watch the news may have seen that last week our area of Kentucky was ravaged by a violent F4 class tornado. We live on the extreme north end of that storm system and just got by, "by the skin of our teeth." Joyce adds more about that below.]]
Also, I (John) am changing prosthetists. I (John) figure I have more sockets than Snap-On Tool company and will not go through the "Trial and Error" fitting system anymore. So after almost two years and about 27 sockets later I have decided to only use a facility which uses the SFS.(Rincoe Socket Fitting System.) The former prosthetist chose not to use the SFS and I have been patient, but I am disappointed with the results, especially since I know that a good fit IS POSSIBLE! (I have already been using the R-HAB ankle, even with the poor fitting socket that the "dismissed" prosthetist called the "final," and I will tell you that without that ankle at least working to my advantage, I would not have made it this far. I will be using the R-Hab ankle which has been a real blessing.
Joyce has also been very busy building Web Pages. I hope she gets caught up soon so she can finish our own! :) Oh yes, WE ARE going to have OUR OWN WEB PAGE, and Joyce is planning a pretty extensive one that will grow. Joyce tells me that our Web page will enable anyone interested in our newsletters to download them, it will include mailing list information for various listservs, hyperlinks to existing pages, a direct email link, and more. Metaphorically--conception, gestation, labor and birth--I think I'd better be nice to her. [grin]
"It takes a village to raise a child" is a favorite expression so I'd like to remind the rest of "our village" to join in in "raising this child." If you have ideas for this web page or have something you'd like to share and contribute, please email us.
We'll let you know when the URL is up... :)
When taking this all into account, you get a small view of what's been keeping us busy and interrupting the regular transmission of newsletters and chats
Well on to my main subject:
I have seen several media stories about U.S. companies fitting limbs to people all over the world, which I think is great. However, I wish more effort was being made to help people in this country. When I mentioned this in private to an executive of a large prosthetic chain the reply was "It makes for better news coverage!"
I know of many independent prosthetists who do work for free. They ask for no recognition and maintain a "low-profile." They do it out of compassion, often "out-of-pocket." I feel certain there are large chains which do the same--perhaps at local office level.
I have, with the help and input of a state rehab specialist, attempted to start a state operated prosthetics lab to fit limbs to amputees which seem to fall through the ever widening, ever deepening cracks in the health care system. The limbs produced by state would be very basic, "no-frills," but suited to needs as closely as possible. And also, ideally, the "staff" would be re-hab trained amputees.
As it is very difficult to sue a government agency, used components (limb bank) could be used if they are in good working order, without a serious threat of frivolous law suits. There seems to be several retired CPO's around who would be willing to donate their time or work for modest fees. Pre-med students are willing to work in the facility for college credits or for the same pay they would receive working at the local Hamburger Haven! The state already has a rehab building with lots of extra room. I have made a list of equipment and priced it out. I am going to start working on a simple form to determine a patient eligibility.
I realize there is long way to go to pull this all together. I am very pleased at the response from the few state officials I have talked to so far.
I just feel that any amputee in this country should NOT go without a prostheses (if they want it) solely because he or she lacks the necessary finances. I know there are organizations to help amputees in need. Perhaps our efforts can be networked for the best possible outcome for all concerned--it's a possibility.
There is a new mailing list forming for ARM AMPS. We will include more information about this in the next newsletter. [I'm still going through data that I tried save from the old computer(s).]
We have received a request for a chat on PHANTOM PAIN (or sensation.) This is a recurring topic here and on many of the listservs. Obviously this is a concern for many of you and we will plan and announce a chat on this subject shortly.
RAINBOWS AND OTHER MIRACLES
Well, between CNN, ABC, NBC, CBS, FOX and The Weather Channel, you'd think I didn't have much left that I could say about the weather and the tornados and violent storms we've had...um, well.. er...I do have something in mind...
Last Tuesday evening a class F4 (Fujitsu tornado scale--winds in excess of 230 mph) tornado struck south of Louisville. Originally it was reported that there were 6-7 tornados. The final determination was that it was actually a single tornado with several fingers and rather wide. The communities hit by this storm were 20-30 miles as-the-crow-flies, but we were on the extreme north end of the storm. My friend and neighbor Marcia, (a nurse) has a sister and family that have been displaced; there home was just one of the 700 destroyed or damaged. The call went out for help and Marcia went straight from the end of shift at the hospital to a new task--finding her family and helping the many in need.
I think that most of you realize and understand a bit about trauma, and have seen/heard reports of the extent and type of damage, the bizarre scene, etc. (I have heard first hand accounts from Marcia, whose brother-in-law is a state legislative representative.) You know that these folks, young and old, have a long way to go to resume "normal" life. And thank God! there were no fatalities and few injuries.
The evening that this took place, I was on the road and making a fast path back home, where John and Jesse were scrambling to unplug computers and appliances.
I saw something that gave me a turn of thought--a rainbow, and then some--because, I actually saw a DOUBLE RAINBOW. I turn 40 years old this year and I have never seen a double rainbow and it was awesome. Please indulge me the brief scientific explanation, before continuing' emphasis is mine.
A RAINBOW IS:
an arc...which appears when sunlight shines through water droplets...The sun, the observer's eye, and the center of the arc *MUST* be aligned--the rainbow appears in the part of the sky opposite the sun...a ray is refracted as it enters the raindrop, reflected from the drop's opposite side, and refracted again as it leaves the drop and passes to the observer.
--Concise Columbia Electronic Encyclopedia Copyright 1994...light from a distant source...strikes a collection of water drops--such as rain, spray, or fog--a rainbow may appear. It appears as a multicolored arc whose "ends" seem to touch the Earth. Rainbows are seen *ONLY* when the observer is between the sun and the water drops... *When the sun is too far above the horizon no rainbow can be seen....if the sun is low enough and the observer is located *IN THE RIGHT PLACE* that is high enough...the observer may see a circular rainbow.
The most brilliant and most commonly seen rainbow is called the primary rainbow....Sometimes another less intense rainbow may also be seen; this is called the secondary bow. It is produced by light that has been reflected from two different points on the back of the drop before emerging into the air. *HIGHER-ORDER RAINBOWS ARE VERY WEAK AND SO ARE RARELY SEEN.*
(In addition, the size of the droplets of water must be "just right;" too big or too small--no rainbow.)
Even from a scientific perspective a rainbow is a wonderous thing. To me, it is a significant "thing" that while not far away a tornado raged, I was witnessing another awesome, uncommon event. A double rainbow.
How can it be that one ferocious storm could produce such different results?--A devastating whirlwind and a magnificent double rainbow.
There is something deeper here, in my heart and mind. It is not scientific and I am finding it hard to express in words, especially in limited space. It would perhaps sound as though I am trivializing to say it this way, but there is something to that rainbow and tornado--something to being in the right place at the right time, opposed to being in the wrong place at the wrong time. And maybe it's the uniqueness of the *perspective;* right place, wrong place? Don't misunderstand. I am very thankful that we were safe and spared, I am very thankful that the storm with potential for doing much worse, didn't. I am proud how the community conducted a spontaneous telethon to raise money for the families affected and pleased the the FEMA response has been as good as it is (so far.) I see folks that have lost "things" and while that is surely hard on the heart, I know others that have lost much more than "things."
Rainbows are fabled to hold secrets, be a highway for angels, or be the marker for a pot of gold, wealth and fortune. A rainbow is a miracle, a faith and a hope. And just as a rainbow can be easily forgotten, dismissed or taken for granted...so can faith and hope and miracles.
I have seen storms and I have seen rainbows--of both the literal sense and symbolically. And rainbows are so short lived and fleeting while storms tend to leave there mark long after the clouds clear. Some people will see ruin and destruction, and some will see rainbows. I am of the mind to always seek out, look for rainbows, and to appreciate them.
Can I explain why I've added RAINBOWS to this newsletter? Not clearly, not concisely, but somewhere deep in my mind you, my friends, are connected to RAINBOWS. ;-D
2.) "LETTERS TO THE EDITOR"
Following are excerpts from letters from one of the mailing list members. We have others as well. It is going to take us a little doing to catch up so please be patient, thank you.
Hi John and Joyce;
You guys are really terrific, but answer me one question, how in the world do you find the time and the energy to do all the things you do?????
You both are extroverts, outspoken whenever it is required (elevator crowd) And I suppose most amputees are introverts bashful and generally quiet and try not to stand out in any crowd.
I do not volunteer not because I would not like to but because I lack the confidence to succeed and do not want to be responsible for the consequences of my failures. I do not offer this as an excuse but rather as an explanation, this may also apply to many others.
I have been fighting very hard to heal a wound on one of my stumps with varied success but I am very very happy to announce the wound is about 95% healed and I am ready to repair my prosthetics (unable to replace until medicare 18 MO). I want to install the new R-HAB ankle with a new pair of feet unless the present ones can be used (I doubt it).
If not for the willingness of my doctor to try any and all alternative methods I would at this time be a A.K instead of a bi-lateral B.K...The real cure was a belief and determination that I would beat the odds and when I finally retired from work I made up my mind I would not use any prosthetics until the sore was completely healed.
The other item that worked was introduced to me by my doctor it is called a "UNABOOT". This is a bandage consisting of gauze premixed with a combination of glycerin, mild disinfectant and then mixed into a paste. The UNABOOT is then wrapped around the stump with a little pressure and tapped to hold in place. This forms a soft type of cast which maintains compaction, sterility and keeps the wound in a healthy healing environment. IT WORKS, IT REALLY WORKS! IT DID FOR ME AND I AM SURE IT COULD WORK FOR OTHERS. I WAS ALSO VERY FORTUNATE TO HAVE A VERY GOOD BLOOD SUPPLY DESPITE BEING DIABETIC.
I had an 800 telephone # but I can't find it for theR-Hab Co. I wanted to call and find out what foot they recommend for the ankle. If you have the # or know the answer let me know please.
If I can walk well--forget that, change it to WHEN I WALK (POSITIVE) I hope to gain some a little of your "get up and go." I apologize for running off at the keyboard so much but I wanted you to know I read and do enjoy the chat and the letter and I do appreciate all your efforts.
WISH ME LUCK I COULD USE ALL THE PRAYERS AND LUCK I CAN GET. Please excuse typing errors (is there some way I can use a spell checker on line.)
And also from S.:
As I stated this is just a short note so is the end but I did want to say I really miss chatting with you and hope nothing serious has occurred to prevent future chats.
--with sincerest wishes for good health and happiness.
very truly yours,
S.
((EDITORS NOTE: We have answered S. privately on some of his letter but would like to include part of that response here, as well as additional information.))
Dear S.,
Thank you for your letter of concern. All is well now, the newsletter will explain what has been going on.
Thank you for your flattering comments. No one can do everything, be everything. Your will burn yourself out trying. As circumstances permit, we do what we can, when we can. Sometimes that'll be less than others expectations, or less than we would like. Success is as much in the trying as it is in the achieving and when not achieving we need to accept the satisfaction in the attempt.
No one needs the burden or pressure and stress imposed by others, we need not put that on ourselves either. We can do the best we can and no one should "demand" more than that from others or themselves. Volunteering doesn't have to be a "monumental" task, it can be in whatever form is suitable. It might be that pouring drinks at a club meeting or stuffing envelopes is what you feel comfortable doing. That is not a minor and trivial task, it is absolutely worthwhile and 100% appropriate. It could be heading up or chairing a project. That is altogether appropriate too. We all have our niche, a place and way we can "do." And you should remember that when you are taking care of one project that allows another to work on their task. And help is appreciated even in the offering. It's cooperation. It IS like a family. The task of preparing a dinner is note suited to a 5 year old, while a child picks up their toys and parent can prepare dinner. So, it is all by a cooperative effort. :)
S., by sharing your experience with the wrapping of your residual limbs with the UNABOOT you already have helped! It's input like that which can help others. Many times I have found suggestions that are well known by one group are unheard of by another. So S., thank you very much for sharing that information! Good job.
The toll free # for information on the R-Hab ankle is: 1-800-473-7348 or you can email them at WWPS@aol.com (World Wide Prosthetics.) They can give you the names of several major foot manufacturers that already have product on the market that is suitable for use with the R-Hab ankle and there maybe others added. So it would be best to call the company.
On the matter of a spell checker: If you are on AOL you can GOTO Keyword: WIN FORUM and the is a software program there in the AOL ADD-ONS that claims to do this for you. However, for email, which is most economically composed off-line (while you aren't signed on) most higher end word processing programs include some kind of spelling/grammer checker. There are other programs that will do this with a variety or word processing programs such as KEY GRAMMER and RIGHT WRITER (there are others, but these are the ones I am familiar with.)
Anyway...when you are online, in a chat and typing fast or on-the-fly, I wouldn't worry about it too much, we all make mistakes. (Heck, even with a spell checker, I make some flubs...most folks will catch you drift and detracting from the relivance of what someone is say because of a typo, etc. is "dirty pool."
Yes it can be a little time consuming doing the Amp-U-T chats and newsletters but we enjoy it ! And make sure you include yourself in the "really good friends" category! It's always good to talk to you and we look forward to meeting you some day.
In the meantime best wishes with your fitting process.
~~John & Joyce Meyer
THE ADVICE (DISCLAIMER)
Please be sure to read the information at this link at least once.
4.) HINTS AND TIPS
TIPS
Upper extremity
For photographic/video equipment, you can purchase a camera focusing ring. The ring has a big tab on it that makes focusing easier.
Lower extremity
Open fingered sports gloves (such as those used by bicyclists) can save wear and tear when using crutches as well as protect hands for manual wheelchairs. You can also use driving gloves, but they don't have the fingertips exposed.
Have a hint, tip, or suggestion? Please email us and we will consider it for use in the newsletter or chat room.
5.) QUOTE/THOUGHT FOR THE DAY
This seemed appropriate for this newsletter. :)
"For many years I was self-appointed inspector of
snowstorms and rainstorms, and did my duty faithfully, though I never received one cent
for it."
--Henry David Thoreau