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Re: AFOs dependency

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Reema,

It is my opinion, (and this is just an opinion) that

you may feel uncomfortable when first taking your

AFOs off, but that feeling (for me at least)

subsides.

I feel that you gain strength by not abusing muscles

and joints while wearing AFOs! You did not mention

whether your AFOs were " articulated " , in other words

had a joint at your ankle which allows limited flexion

of your foot but will not allow rolling to either

side. I think some in fixed AFOs may lose some calf

muscle from non use, but those who can use articulated

AFOs will retain this function longer.

Jim Nash

West Liberty, Ohio, USA

What about your " experience " with AFOs?

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I have had AFOs for a year now, fixed at the ankle to prevent

me from tripping, and because my balance is so bad. My experience

is that my legs HAVE become weaker. But, I haven't fallen in

a very long time, and I used to fall a lot! I wear my AFOs

when I leave the house, but when I'm home I leave them off to

force myself to use the muscles I'm not using when I wear

them. My advice is to leave the AFOs off when it's safe to

leave them off.

Exercise without them - meaning stretching, etc, and try to keep

your muscles as strong as you can. But never sacrifice your

safety. It's hard enough for me to get around with muscle

weakness, I can't imagine what it would be like if I had a

broken ankle or leg from not protecting myself.

For me, AFOs are a necessity, and I have to accept the

side-effects. The best analogy I can think of is that if I had

high blood pressure, I wouldn't stop taking the medicine just

because it made me drowsy.

For a look at Rehabilitation Management of CMT, try this book

http://www.aicmt.org/books.htm

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Reema,

I have had the same concern with my AFOs. Somewhere I heard that once you start

wearing the AFOs, muscles aided by them will become weaker. It made sense to me

since those muscles don't have to work so hard to maintain balance, etc.

I would be curious to know how others feel about this. I knew when I started to

need AFOs, but surprisingly, I didn't find I always needed to use them. I save

them for days when I know I have to accomplish a lot. If a lot of standing isn't

required for a chore, I leave them off. If I have a day where I am feeling

particularly weak, I wear them all day.

I'm not sure if these strategies are helpful in maintaining my leg strength, but

I hope so. AFOs have increased the quality of my life by allowing me to do more

when I need to. At the same time, I will leave them off as much as possible in

order to continue using all of my muscles. A time may come when I will need the

AFOs everywhere I go, but that day has not yet come. In the meantime, I will

play it by ear!

I hope this is helpful.

Danita

----- Original Message -----

From: reema bansal

Sent: Monday, June 23, 2003 1:34 PM

Subject: AFOs dependency?

Hello everyone,

I recently got AFOs. They are tailor-made. Everyday, I practise

walking in them for sometime. But when i take them off, I feel

uncomfortable. So, I am scared that if I get used to AFOs, I

might not be able to manage without them at all. Otherwise, I

was somehow managing without AFOs as well. I want to try them

in hope of improving my gait. I have grave balancing problems.

Also, will the AFOs make me dependent on them? Till now, there

was no 'external' support for my body except occassional help

by friends.

With thanks

Reema

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You're right , not wearing your AFOs is a dangerous thing!!

I had fixed AFOs and wouldn't wear them regularly because of the

discomfort and that feeling of losing strength. Then I took the

big fall and now I have hinged AFOs. They don't seem to be

affecting my strength level. I guess I was kind of a

self-imposed trial for the pros/cons of the two types. I really

like my new articulated (as Jim says) ones. I suddenly feel

like I have my life back. I haven't felt this good in almost 20

years.

P.S.

I'm pretty good about the blood pressure medicine tho, I guess

the really big one scares me more. LOL.

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I look at AFOs the way I look at eye glasses. They are just tools to help us.

I don't know of anyone who wears eye glasses without good reason. Usually

people squint, hold reading material closer or farther away, and otherwise try

to

avoid getting them for as long as possible. I had a nearsighted friend who

even walked into trees and people before she finally decided she couldn't put it

off any longer and got a prescription for glasses. A male friend was the

same, too vain to get glasses until he started bumping into things. When people

finally do decide to get a pair it's because they NEED them, not to make a

fashion statement.

Our other life tools are the same, be they orthotics, AFOs, hearing aids, or

whatever. We don't get them until we are almost desperate for help. People

get AFOs because their legs or ankles are becoming weak, or because they fall

often, not because they are lazy. CMT is progressive. It will continue to

progress, although the rate of progression varies widely from one person to

another.

By the way, I think it's great that Harry Potter wears glasses because now

kids think of them as cool. It must be a relief for children who need to wear

eye glasses to correct their vision. :-))

Kat

Seattle WA USA

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I have had CMT for over 15 years, and only just recently got serious

about taking care of myself. As a result, I have gotten in touch with

MDA, and as soon as next week, I may be fitted for AFOs. I think I need the

support, because of the fact that I spend so much time on my feet. I

have problems with tripping, caluses, hammer toes, etc. I also get back

fatigue, and foot pain from trying to just stand upright! It seems to me that

the

benefits outweigh the risks. I also wear glasses, and it seems like pride

would be a dumb reason to miss all the things I CAN do with them- to ever go

without them... Anyway, I remember too well how cruel kids can be, but I

always try to picture them as adults now bumping into trees... so it goes.

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