Ideas/ Need Advice

[Guest guest]

Hi Kathy, just wondering if you + have tried going to the doctors

at one of the MDA clinics? Even though MDA is dystrophy, and CMT is

atropy, MDA does help persons with CMT. Here is the website:

http://www.mdausa.org there is a place to type in your zip code, then

it will give you the one nearest you. Also, ANY medical expenses that

you have to pay for entirely (as in without insurance or what insurance

doesn't cover) can be income tax deductible. So, save all your receipts

for whoever does your taxes.

Orthotics/braces probaly are going to depend on what needs and

what his activity level is. When I was 27, a Dr. at UCLA told me I MUST

wear braces. To this day I do not. I am now 47 and wear simple, in-shoe

specially made for my feet orthotics. These were suggested by my

Internist. I had them made by http://www.swissbalance.com They also

make all kinds of braces and pedorthotics, etc. My Dr. wants to keep me,

my feet and legs in use as long as they can be. I am a toe walker by

nature, the orthotics coupled with stable cross-trainers and a focused

walk on my part allow me to hit the ground heel first, then toe. I still

have leg muscles and they still get used! Every year I go in to have my

orthotics recovered or adjusted if needed. Since each orthotic is

different, due to two very different feet, I am sort of 'evened-out' and

my balance seems to be better.

I haven't heard too many raves about the Toe-Offs . And it is my feeling

(personal opinion here) that anything bought like this over the counter

might not be the best thing, as I believe good orthotics/AFOs need to be

made to a precise fit.

If you go to our main CMTUS page and click on 'links' there are a number

of sites about AFOs.There is also a site in there for finding a good

orthotist. I think it is Cpeds or something like that. Perhaps you

might want to print out the information and take it to your doctors

along with the information from one of the two general CMT group. Also

perhaps take along some CMT brochures as well. They are easy to read,

give a general synopsis, etc.

Gretchen