atrophy from AFOs

[Guest guest]

Hi All,

I was just catching up on the last few days of installments.

Elaine, after a year in only one AFO, I now have a pair,brand new as

of 12/28/05. I was not happy the day my doctor wrote a prescription

for bilateral AFOs, but in all honesty as much as I hate to admit

it, I feel more stable in them.

Mine are solid, and yes that does inhibit one from a graceful gait, I am still

adjusting,I feel a bit like enstein. They are not fashion forward, but

long skirts, trendy jeans and nice dress trousers help to hide them.

I can't hide the way I walk, and yes, I too hate when people stare. I am in

public relations, and I am a people person, but sometimes the

staring is bothersome! I really am getting much better about that

though.

For me, I am adjusting well and my husband is very encouraging and

supportive. Mainly, I think it is difficult when you see someone

you haven't seen for awhile, and they get this shocked look on their

face. (I use a forearm crutch too.) but I have come to realize that

mainly this comes from care and concern. Anyhow, I hope that you

find stability, comfort and peace of mind!

Donna B., I can so relate to the comment you made about avoiding

ramps! This past Monday my husband and I went to lunch at a

restaurant in which you take a ramp to enter. I felt like I was

climbing Mt. Everest!!

In relation to Jimmy's questions about hinged, vs. solid AFOs -

could anyone let me know if they have experienced additional atrophy

from wearing solid AFOs, I can't seem to get a definitive answer

from my PT or my doctor - I keep hearing the term - you lose what

you can't use. and my AFOs certainly are restrictive. I walk from

my hips. Thanks for any comments or help!

Have a nice weekend everyone!

Kim

[Guest guest]

Kim,

Adam and Spencer both atrophied from using AFOs. Adam severely, he does need

them tho. A good orthotist won't make them too restrictive so you can still use

some of your own muscle. We had a bad orthotist for years. Much damage was

done.

[Guest guest]

Hey Gang,

I'll have to admit that when I experienced another downhill episode (that's what

I call it when I feel my CMT symptoms worsening) and started wearing the AFOs

more often than not that it seemed the muscles atrophied more quickly. Or maybe

they were going to anyway.

All I know is I can take the AFOs off and I can see their outline, I've lost a

lot of the flexing ability in my ankle joints (even before the arthritis) and my

feet started to turn in more. I cannot walk without the AFOs at all anymore and

have been told I should walk as little as possible because of the irreparable

damage I was causing my ankle joints (not to mention the knees and hips).

My pride keeps me from the wheelchair on a permanent basis though I do use it

when I need to shop for any period of time. Physical Therapy helped to get the

muscles stretched and keep the feet from turning so badly, unfortunately I went

when it was really late in the game and not a whole lot could be done (gotta

love HMO's).

Hope

[Guest guest]

I only need an AFO on my left leg and agree that there is atrophy from

using it. I resisted it for a long time until a neurosurgeon asked me

I wanted to trip over a blade of grass and break my hip. I decided I

really didn't need a hip complication so ...

I think my foot was already telling me my leg was atrophied -- sort of

an early warning system.

I decided toeed it.

It must be difficult for a child to wear an AFO, but I think an AFO is

no different than the tri-focal glasses, the bi-lateral hearing aids,

the cane I use keep people away from me in crowds, and the three tooth

bridge upper bridge I wear.

When I get up in the morning I feel like Robo-Cop girding up for

battle. With them on, I am only crippled, not disabled.

-- Larry