Amp U T chat is for amputees.

AMPUTEE CHAT NEWSLETTER

IN THIS ISSUE

1. NOTES FROM John & Joyce Meyer
2. "LETTERS TO THE EDITOR"
3. GENERAL INFORMATION
4. HINTS and TIPS
5. QUOTE/THOUGHT FOR THE DAY

1.) NOTES FROM John & Joyce

WHAT I DID ON MY SUMMER VACATION:
OR
"LAME" EXCUSES FOR NOT HAVING THE NEWSLETTER OUT PROMPTLY

I would like to thank all of our mailing list members who have been so patiently waiting for our newsletter. AND WELCOME TO THE NEW FOLKS THAT HAVE JUST JOINED US! :)

For those of you who were not aware of what has transpired here’s the slow motion playback [grin.]

We purchased a new computer (well, actually about four new computers if you count the defective ones!) We then had to set up the system. In order to build web pages (Joyce’s other job) we also purchased a flat bed scanner. Then came the ink jet printer (they ought to GIVE you the printer if you promise to buy the ink!) Most recently we got a digital camera. And then came the thrill of working the bugs out of Windows 95 (which I personally give an "unenthusiastic one artificial thumb up") and installing the ServPak update etc.

Tornado season roared through our area. We got our exercise running through the house unplugging the valuable electronic equipment and resetting VCR clocks. In addition to the storm related power outages and phone connect problems we discovered that our phone company service is inadequate to meet the demands of our growing community so...no more than 72 users can be on the phone at the same time for the entire town!

And let’s try and forget the AOL AUGUST CRASH :(( That of course fell on a Wednesday also.

As other problems began to cure themselves (except the phone service! grrrr....) we had a new surprise: "Uh, Houston, we have a problem." I had developed some arm problems and had some revision surgery about 4 weeks ago. While not really a big deal, I have to wait a couple of more weeks for a new arm.

Joyce has been working away the last few months on several major online projects. You might hear more about these in the next few weeks. It has been taking up much of her time--some nights she hasn’t come to bed until 3: am. Work will be continuing on these projects but at least the foundation is there, now it should be just "housing maintenance."

CATCHING UP ON WHAT’S NEW

1.) I have been invited to be a guest speaker by University of Kentucky for a spring conference and asked by other groups to give other talks. Most recently we purchased a "pre-owned" (laughing out loud--about thirty years old) travel trailer which I hope to use for recreation AND to visit new amputees.

2.) I now have a well fitted leg socket! (Done by a new prosthetist using the Rincoe socket fitting system--only needed one fitting and adjustment.) [smile]

THE NEW AMPUTEE

It’s not just the emotional and physical trauma--any new amputee I’ve talked to is also overwhelmed with questions. While this is normal, the new amputee soon realizes that getting information is no easy task. Unlike sports, cameras, computers, etc. there is no newsstand that carries "Amputee Monthly". I thought I would begin a mini-series addressing types of amputation--the below knee (BK).

Most BK amputees return to their daily functions as well as their hobbies after some time. How much time this takes is dependent on health, age, previous activities, etc. Because it will probably be several weeks before "you" (i.e. the new amputee) are fitted with a prosthesis you should try to get as much information as possible. I would begin by calling the ACA, Amputee Coalition of America* (see note below) and ask for a copy of their publication "In Motion" and ask them if there is a support group near you. The magazine contains very good articles AND advertising by artificial limb and component manufacturers--many with toll free numbers. Get all the videos and printed material you can but remember--EVERYONE IS DIFFERENT. These tapes will show only their best work and success stories, however, they do show what is possible for certain individuals as well as some of the products available. There are other sources of information on the WEB. There are also facilities and manufacturers that don’t advertise but are also excellent.

GOING HOME...

You will probably be given a set of crutches, instructions on their proper use and hopefully so time in physical therapy. You may want to rent or purchase a wheel chair. I would seriously consider a used one if your insurance provider won’t buy you a new one. I have seen used wheelchairs in the local newspaper for under $100. Wheelchairs are recommended because the leg rest can keep the residual limb elevated, reducing both swelling (edema) and discomfort.

When you get home keep the limb elevated and, if so instructed, adjust the ace wrap. Learn the proper technique of wrapping from the doctor or nurse. When the dressing has been removed, ask your doctor about messaging the limb. This helps with desensitizing the limb. Be sure to move the residual limb as instructed to further reduce swelling and prevent stiffness. Wear the shrinker as instructed.

Here are some tips, in no particular order of importance:

1. Try to talk to another amputee with the same level of amputation, age, activity level etc. I realize this is not always possible but you should at least try. You’ll be dealing with many emotional issues, try not to be a "woe is me" types or let them "get to you." Sympathy you can get from family and friends, but they can’t provide relavent information, tips, and camaraderie that you can get from fellow amputees. To find other amputees check with your doctor, the ACA, nurses, hospital, rehab center, prosthetist and other organizations.
   
   (Of course, there are those people that will feel that they have no one to turn to, are afraid to talk to their family or friends, or feel like there is no one who understands. :(( So, if you are approached by someone that needs to borrow your shoulder for a few minutes, try to be considerate. "There, but for the Grace of God, go I.")
   
2. Don’t do anything "medically" without consulting a professional. If it sounds "weird" you should get a second, third, etc. opinion from other reliable sources.
   
3. Place commonly needed items in easy reach. Keep food commonly used on the lower shelves of the ‘fridge. "Reach & grab" tools are inexpensive and are available through several sources.
   
4. Explain to family and friends that when you need help you will ask for it-AND THEN ASK WHEN YOU NEED IT! No one is truly independent, we don’t all grow our own food, we depend on farmers; we don’t build our own furniture, refridgerators, cars etc.--we buy them, have them made or serviced. We are *all* INTER-DEPENDENT.
   
5. All major changes take time to adjust to. DON’T GIVE UP! Everyone (not just amputees) feels "blue" now and then--sometimes we "go to our pity-party" but then we "come home again." However, do not hesitate to seek professional help if your becoming very depressed. Reluctance to seek help is dangerous.
   
6. Regardless of the reason for the amputation get on with your life. Ignore "well meaning" people who say things such as "I knew a person...who lost both arms and both legs and dances ballet while performing brain surgery." Even worse are the folks that say: "Your Great-Aunt Joan (or Uncle Bob) had the same surgery and she (or he) became a total invalid. It was such a burden on the family." These folks have no idea what they are talking about...it second hand or worse and it is irrelavent.
   
7. It’s OK to be a little self-centered for awhile. Give yourself a treat (see below.)
   
8. Set realistic goals in a reasonable time frame. If you can’t achieve them then you DIDN’T FAIL, you just need to adjust the goal or the time frame.
   
9. Keep up with your interests and hobbies by reading the monthly publications for example. Just because you can’t do something right now, it doesn’t mean it’s out of reach for the future.
   
10. Don’t become obsessed with being an amputee. While initially it can be time consuming, do the best you can to return to or retaining your pre-surgery life style.
    
11. If you can manage to put people at ease they will usually treat you normally. At an "appropriate" moment briefly talk about the amputation and then "let-it-go." This way you are not wondering "when are they going to ask about my _____" and they’re not fixated on "I wonder what happened to him/her." Clear the air and then just be "folks." <smile> There is more to a person than hands, arms, legs, etc.-- those are parts--a percentage--not the whole of your being. Don’t make it into the whole of your being. The "bigger" you make your amputation the "bigger" others will make it too.
    
12. When the time comes for your first visit to the prosthetic facility go prepared with question. Write them down, it’s hard to remember what’s on you mind when you might be nervous just being in an examining room and apprehensive about the exam. Ask questions, jot down answers. (Same thing goes for the Doctor’s office.)
    
13. If you don’t feel comfortable with any of your medical team get someone else-your the boss!
    
14. If you have a computer or have access to one you can use it to get information:
    
    a.) Use a "search engine." (A kind of yellow pages/Dewey decimal system for the internet) My favorite is HTTP://WWW.ALTAVISTA.COM (use lower case) and enter the words amputee, amputees, amputation and/or prosthetics.
    
    b.) Listservs (automated mailing lists) have some good information. Information is posted on a regular basis, some servers release information imediately, some release posts twice a week, some posts release one at a time, some release as a "digest." Some listserv are very clinical--aimed at the profession, some are self-help, etc. You may meet "cyberfriends" by your posts to listserv. (However, sometimes rather nasty posts will slip past the moderator and a "flame" war can start.) Keep in mind that you are seeking information or providing information. The information on the lists can be very useful.
    
    c.) Access to computer areas is usually much faster late at night.
    
    d.) For security reasons and to avoid possible harassment, don’t give out any personal information.
    
    e.) When creating a profile online be careful what you list.
    
15. Eliminate all possible trip areas in and around the house while using crutches. These might include small throw rugs, chairs that are not pushed under a table, telephone or electrical wires, etc.
    
16. Install slip protectors in the tub or a non-skid tub mat.
    
17. Use a shower stool and install grab bars if possible.
    
18. Never walk without foot protection on your sound leg- the normal reaction (suddenly raising your good leg) to even a small pebble brought indoors could result in a fall.
    
19. NON-EMERGENCY amputations: If you are facing an amputation seek a surgeon who can construct a good residual limb. A prosthetist is probably your best source.
    
20. It’s a trying time for you, your family and your friends--discuss your feelings. Don’t wait until your ready to explode. It will usually be at the wrong person!
    
21. Try to give yourself some thing to look forward to each day, even if it’s only for a half an hour. It can be a TV show, video tape, reading, listen to music, talk online/send e-mail or even a nap!

*NOTE:
ACA/"In Motion" information
1932 Alcoa Highway
Suite 365
Knoxville TN 37920
Phone: 423 524-8772

~~John (& Joyce) Meyer

2.) "LETTERS TO THE EDITOR"

We had no LETTERS TO THE EDITOR that we could reprint. But we did have many nice letters from you asking how we were and so on. Thank you all for your care and concern :) John is doing better and Joyce might be able to resume a normal time schedule!

HOWEVER, in the next issue we will be sharing a particular series of correspondence between a prosthetist (Robert Bedotto) and state and local agency and insurance companies in the quest of a suitable prosthesis for a patient.

3.) GENERAL INFORMATION

THE ADVICE (DISCLAIMER)

Please be sure to read the information at this link at least once.

4.) HINTS AND TIPS

TIPS

Upper extremity--body powered

Instead of wearing a full "T-shirt" (to protect your back from the abrasion of cables) all the time, try trimming one down to just fit over the upper part of your body. You might have to "surge sew" the trimmed edges to prevent raveling, but knit "T-shirt" fabric doesn’t run.

Upper extremity--electric

A small amount of electrical contact cleaner sprayed on the grieffer side-to-side contacts helps prevent intermittent operation. Contact your prosthetist for details of suitable chemicals.

Lower extremity--

To make curbs easier to climb use portable ramps which can be carried on your chair OR use a home made device(s). This can be as simple as strips of wood, of different thicknesses (approximatly 1"each) stacked to form mini stairs-just make sure some one holds them in place!

The mini stairs are placed flush with curb and should be made wider than the wheelchair width, as they are placed parallel with the curb.

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

"No culture can live, if it attempts to be exclusive."
--Mahatma Gandhi

© Copyright October 8, 1996 J. Meyer. All rights reserved.