My Introduction

[Guest guest]

Hello. My name is and I was referred to by R... on the CMT

organizations website. I am 61 and was diagnosed with CMT in 1994 at age 49.

The diagnosis was as an late onset type. I suspect that I had the disease long

before it was diagnosed. The doctors I saw typically figured that my lack of

stability was due to the ankle I'd broken severely when I was 30 (lost a 1/3 of

the ankle bone and the orthopedic surgeon didn't expect to see me walk,

although, thank God, I did as I was a single parent raising a 2 and 6 year old.)

Though an HMO doctor saw my feet and took pictures of them because he was on his

way to an orthopedic conference, he didn't provide me any feedback. It wasn't

until I was seeing a foot doctor, Dr. Mozena, in Portland, that I was sent to a

neurologist. Dr. Mozena identified my high arches, champagne ankles and drop

foot. He also referred me to get braces, which I rejected as they were too

limiting.

After several stress fractures and a break, my orthopedic doctor discusses

braces with me. When I showed him the braces that were built, he recommended

that I see a different specialist who could provide me a brace without the depth

of fiberglass and metal in the ankle. Those old worthless braces would have

required me to wear gun boats as I call them, which on my frame and on my thin

ankles and calves would have been ugly and clumsy.

The new braces do not have a metal hinge at the ankle and are much thinner, and,

they work. I wear a size larger Reebok high top for added support. They are

the lightest shoe I have been able to find, aren't heavy and clumsy and look

okay.

Unfortunately or fortunately, whichever way I want to see it, I was able to wear

relatively normal shoes in my 20s, loafers in my 30s and struggled with what I

could and couldn't wear in my 40s as I didn't know why my shoes wouldn't stay on

my feet when I walked.

I now have severe fatigue, even after trying swim aerobics several times and not

improving, but in fact spending more time tired. My hands are also much weaker.

After 2 years of trying to work at a couple of at-home businesses, I am a stay

at home wife and daughter. In order to compensate for my lack of income, my

husband and I took on the care of my father who has late stage Alzheimers.

I am able to do this as he is in a wheelchair, sleeps 12-14 hours a day and only

requires that I feed him and myself 3 times a day, do a couple of loads of

laundry and conduct 90% of my shopping online. If I spend an hour at the

grocery store I am so tired that I end up napping for a couple of hours in the

afternoon and rest my painful feet.

So, this message is probably a lot longer than expected so I will end now.

I am in the midst of applying and being denied SSDI benefits and would

appreciate any information anyone has on the process.

Thank you,