Re: anyone else feel a BIG atrophy difference from AFOs?

[Guest guest]

Hi Elaine,

I think it is a balancing act. Safety from falling is the most important thing,

but there is a balance between protecting the joints and body alignment with AFO

use vs. maintaining muscle mass through regular use - outside of the AFO.

The miracle for me (it has not been true for all and it may not always be for

me...) has been deep water running. The kind of exercise that involves wearing

a flotation device to exercise in the deep end of the pool. Shallow water

aerobics is too hard on my feet.

Also, I try to go without AFOs when possible & always use custom orthotic

insoles even though they are hot & force me to up my shoe size from 7 to a 9.

Also, even though I need assistance for both feet/legs, the acceleration of CMT

has always been more noticable in my right - with or without AFOs. Hope this

helps.

Chris

[Guest guest]

Hi Elaine,

I noticed atrophy too when I got my braces in March. It was mainly in my ankles

which used to be strong before, but suddenly they felt like spaghetti ankles. I

realized that wearing braces means that I need to work on my muscles in another

way than just relying on my daily walking. This is what I did:

1. I changed the insoles which were too tight and did not allow any ankle

movement. The new insoles are just under my foot, the don't go around the foot

as the first ones did. That helped a lot, so after the first month of atrophy,

it got better!

2. I don't wear braces at home, mornings and evenings.

3. I work out. I didn't before I got the braces, feeling I was so active anyway.

But now, I feel that 1 hour a week in the gym makes me stronger all over. I do

special foot-ankle excercises too, like balancing on different things, rolling

balls with my feet and step-up aerobics (just for 5-10 minutes and holding onto

bars for balance). I do the excercises without braces.

I feel the same: I don't want to be dependent on the braces. They should be

there to help me,but I don't want to be helpless without. Training feet and

ankles is essential. But CMT is progressive, so it is natural that we get weaker

no matter what we do. Also we get older, and although I am just 38, I feel that

some things are age related.

Beata