Re: affected without foot drop

[Guest guest]

Gretchen,

I'm wondering how you're feet are affected with CMT without the foot drop. I

never went into braces until I was 29; now I'm only using the ankle straps.

However, I always had the foot drop.

Dawn

[Guest guest]

Hi Dawn,

I don't know why I don't have foot drop. But it may have something to

do with the surgery I had as a kid. Or it may have something to do with

all the swimming, biking, and walking in sand all these years. My

peroneal muscle is hardly weakened and my ankles are flexible and

stable. I am affected in the feet, but underneath, and that's why the

custom orthotics work so well - each foot is different mechanically,

and the support under my feet helps balance the foot strike on the

ground to center, and a heel-toe gait.

I maintain a very active exercise program, and have done so for many

years, maybe that has something to do with that. Physical Therapists

have given me so much help and ideas to improve walking and balance too.

Gretchen

[Guest guest]

I don't have foot drop either. Never needed AFOs although I've been

through a number of in the shoe orthotics. My sister who is affected

more than me had a temporary (6 month) dramatic foot drop -- one day

normal the next no ability to raise the foot and had to rubberband

her shoe on, that resolved almost completely just as fast as it came.

Interestingly it was only one foot. That was the first time CMT was

mentioned in my family, but the MDs favored MS. That was at least 20

years ago. My dad and other sister have not had foot drop either. All

of us are a bit clumsy and liable to trip over our own feet. I figure

it is probably a very mild foot drop that only results in clumsiness.

All of us are also very active. My dad is going strong as a cattle

rancher, doing everything himself at the age of 66.

[Guest guest]

Thanks Gretchen,

I know that some of the balance exercises work. I do yoga at home and on one of

the tapes, the instructor even recommends leaning up against a wall if you can't

balance in some of the poses. So I feel I'm still getting a benefit doing those

poses. There's also this round plate like thing that sits on top of a sand

filled (I think) ball. That is something I'm thinking of getting to help recruit

those muscles that don't need the dying nerves. Ok. Gotta go pick up my son.

Thanks for helping me brainstorm.

Dawn

[Guest guest]

This sounds like HNPP. Have you ever had genetic diagnosis? I have HNPP and it

mimics CMT a lot. I was first diagnosed with CMT til I had the genetic testing

done.

Bree-Anne

[Guest guest]

Hi Bree-Anne,

I'm not sure who you are directing the question to, but in my case I

was diagnosed with HNPP until I had the genetic test which proved

CMT. I agree that clinically my symptoms are almost the same as HNPP.

Holli