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My newer ones are lower, my orthotist tells me they have decided that

the lower one works just as well.nThese come just above sock height, it

felt different at first but I like it now. Ask your orthotist, I have

other friends with CMT who have gotten shorter ones too. They all have

liked the shorter AFOs.

Bob

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Elaine,

My AFOs come just below the knee, this way they give me enough

balance to stand alone without holding on anything and walk nicely. It

took me some time to get used to them, I felt like you that my legs

where held my something but I needed the support.

Spy

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  • 3 months later...
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Hi everyone,

Please HELP.I have had one AFO for my left foot for just a year, and all of a

sudden it's like all of the strength has left my leg. Is this atrophy from

wearing this AFO?

I started PT last week to learn the excerises to help, BUT if I had known that

an AFO would do this I would not have gotten one. I think I just would have

continued walking with my drop foot. I don't even feel balance with this on.

I'm wondering if it alters my gait altogether. Oh I am just perplexed as to

what to do.

Suggestions, oppinions,? Thank you all so much for reading this and

helping me. I love being a member of this group.

Elaine

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Hi Elaine- I've been wearing custom made AFOs since 1985. I love wearing them.

I've always worn mine on both feet. My balance has gotten worse over the yrs but

not from wearing them. My calves have atrophied too but in my opinion that's

part of CMT. My foot drop is very bad and I am VERY dangerous to myself without

wearing them. Also for me an improvement in my balance happened after I had all

10 toes straightened.

Make sure the bottom of your AFO is made right for your foot. When I have new

ones made I always make sure my leg braces stay straight up when my shoes are

off. That little trick does make a big difference.

I hope this helps some. Good luck.

Barb

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Elaine,

The timing of events might indicate that the exercises in PT are too

much for you. I hope your PT fully understands CMT. Did you have your

AFO on during PT or not? Secondly, it might be a good idea to get your

AFO checked out. Different needs now may require different support. Is your AFO

" off the shelf " or was it custom made for you?

~ Gretchen

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Hi Gretchen,

My AFO was custom made. Hanger orthotics and prostetics (spelling) a licensed

orthotist . Very nice and very willing to help me. The PT is going well. One

of the therapists has actually worked with a hand full of CMT clients before.

The other therapist there has not, but was very glad I brought alot of info with

me regarding CMT.

I have an appointment with the orthotist this Tuesday to talk to him about

perhaps another one. But we'll see. I just want the best of both and be able to

wear and funtion in this AFO and to keep and increase the strength I have in my

legs. Thanks for listening and answering. :)

Elaine

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  • 2 months later...
  • 9 months later...
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Hi everyone just venting here. I am 59 and having been wearing only one AFO for

approx 2 years on my left foot. I should say i have tried 4 different orothists

and four different AFOss. Anyway ATROPHY IS A YES!!!!! I feel like my left

foot not so much the leg but the foot weighs a ton after taking it off for the

day. I wear it out but not at home or when I excersise at Shapes but is is

soooooooooooo frustrating. I used to walk my neighborhood drop foot and all,

and yes tripping too but even this doesn't keep me from tripping and falling.

Sometime I feel like it helps, but also hinders. I am not sure footed at all.

How do some of you folks do it with two???? Thanks for reading this, sometimes

I just wish I never tried one, now I am dependent on it.

:( Elaine

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Hi Elaine - you said you are now too dependent on your AFO.  Could it be that

your leg would have atrophied naturally even if you didn't wear AFOs? 

I use to take miles of walks a week before knowing my foot was dropping. Each

time I would walk, by the end of the mile my feet felt like bricks - which is

what sent me to the doctor to find out why.  I would trip and fall on unsettled

ground. 

Once I had my two AFOs I felt like a new person - I could run through the yard

w/o worry.  I do believe the AFOs bring about some atrophy - but how much would

have happened anyway w/o your AFO?

Ann Rocha

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Hi, Ann

That is so true, that is something I will never know. But I use it and try my

best and now just joined Shapes to do alot of different excercises and it's

funny Ann cause I feel the CMT in my left hand too. It's like it affects my

left side the most and I am a lefty.

Thanks for your response,

Elaine

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Elaine - when I first realized the depth of my CMT I didn't know it would affect

my hands too.  But 10 years after my diagnosis my thumbs especially are very

weak - they are always shaking.  I don't have braces on my hands, that's how I

know my feet/ legs would have atrophied considerably w/o braces on.  But it does

seem so gradual, that sometimes I am shocked at the next step in weakness.  We

also have to give some of our atrophy up to age - the older we get the less

strength we will have.  Stay strong inside - that's where it counts the most.

Ann Rocha

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Elaine

My son Spencer says the same thing about wishing he had never tried AFOs.

Someone should have explained to us that they are addicting.

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  • 3 weeks later...
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Hey , how old is your Spencer? Do you use AFOs? I only have one and

sometimes wish I never got it two years ago. Addicting for sure.

Elaine

MommyToJase@... wrote:

<My son Spencer says the same thing about wishing he had never tried AFOs.

Someone should have explained to us that they are addicting>

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Hi again, thanks for your responses. I know what you meant by the word

addicting, like habit forming. Just having one for two years it's like I put it

on every day now like my stockings. Anyway this group is great to vent to and

learn also. :)

Elaine

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