Re: Foot atrophy from AFOs

[Guest guest]

Elaine,

I believe they do cause atrophy. I have 2 kids to prove it.

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[Guest guest]

Hi Elaine,

I agree that AFOs don't prevent falling or help with balance. My neurologist had

me get them for both legs recently at the age of 52. I don't know if they might

have been more helpful when I was younger & stronger but I found them to be of

no use at all. After only wearing them for short periods around the house trying

to get used to them, I could barely walk at all after taking them off.

My balance was worse with them to the point I was afraid to take one step

without something to hold onto. Getting up from the floor after playing with my

grandson was near impossible. I'd hate to think what could happen if a person

fell with them on. They were a total waste of money since my insurance didn't

pay for them plus the cost of shoes to fit them. Not to mention getting my hopes

up after all these years that something could help me then to just be

disappointed.

I wasn't diagnosed until 4 years ago & had never seen a doctor for CMT until

then. The only useful advice he gave me was to get a walking stick...the kind

used for hiking. He said it gives you more help with balance than a cane. I've

found it to be very useful around the house especially when stooping to pick up

toys. Only problem is, like you, my left hand is weaker so if I'm holding the

walking stick with my stronger hand then that leaves the weakest hand for

picking up & carrying things. It's better than nothing though.

I don't know that the AFOs caused your weakness. I don't know how long you've

had CMT but since you say that one hand is weaker too then it's possible you

have just worsened over the years. Since I turned 50 I've seen a pretty big

decline in my strength. I'm hoping it will slow down because I need to be strong

enough to take care of my grand kids at least until they're a little older.

Does cold weather make your hands weaker? It does mine & it's much colder where

I am than it is in Florida...40 to 50 sounds good to me.

Sorry this is so long...I just needed to vent my frustrations with the AFOs.

Jan

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[Guest guest]

Hi Elaine,

Reading this I feel instinctly that you might be wearing unsuitable AFOs. I

tried some different ones, and those that hold your foot too tightly might cause

muscle atrophy. Right now, I wear Blue Rocker braces and insoles, but my feet

are not " held " by the braces at all. My feet are free to move in the shoes. This

is very import ant for me, since it helps me compensate for unevensses and also

it helps my feet muscles. Rigid AFOs that hold my foot causes that numb feeling

for me too, after one day. I think Blue Rocker braces are great, since they

allow foot movement. I do have some atrophy in my calf muscles now,after a half

year with Blue Rockers, but I can still walk round without AFOs as I used to

before I got them.

Beata

[Guest guest]

Hi Elaine!

Yes, I've noticed the same thing with my left foot. It seems to have become

worse since I started wearing the AFO but I just attributed it to my condition

worsening, so now I wonder. It hangs just like you said yours does. I am now

starting to feel weakness in my right foot which contributes to lots of losing

my balance and stumbling! I'm getting used to using a cane, I teach and it helps

a lot with pointing!

Hang in there, the warmth will be back, or at least I hope so here in Virginia

too because the cold sure seems to affect my body.

Take care!

Lynn

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[Guest guest]

We got Blue Rockers recently, and they feel much better for Marco than the

rigid/hinged AFOs.

That and daily stretches are helpful too.

Maneesha