Re: Inheritance is a mystery

July 20, 2006

Dear Tom,

I have been wondering about being the only one in my family to have

CMT, I can't find anyone in my family tree that had it. I was also

wondering why my CMT has gotten to where I had to go to a wheelchair,

and if it was because of my diabetes and other ailments, lol.

When

did you have to start using a wheelchair and how old were you when

you were diagnosed? I am trying to learn how this effects others so I

can get a feel for where I will get to. Any history you can give or

how it affects you would be appreciated.

Thanks

July 21, 2006

Sandy

I wasn't diagnosed until I was in my late thirties, but I had problems with my

feet since I was very young. I am not sure why it wasn't diagnosed then as I

had surgeries at the age of 10, 12 and 14. I even had neurological tests done,

but somehow the doctors missed it.

I went to my first CMT seminar at 38 in Philadelphia and was very

interested in the discussions. It was the first time that I knew I

had a specific disease and that there were others who also had it.

When I reached 40 things got difficult and by the time I was 42 I

applied and began receiving SSDI.

The first time I used a scooter at a supermarket was tough. I started using a

manual chair at 42 and got a scooter from MDA at 45. I went back to school and

got a Bachelor's and a Master's degree in Urban Planning.

Can't find a job in my field, being over 50 and a wheelchair user makes it tough

to start a new career.

Everyone's progression is different, but I found that you can

accomplish alot if you put your mind to it. My brothers are having a

hard time dealing with their disease. When I first realized that i

would never get better I was crushed. But I know now that CMT is not

the end of the world and that there are other things out there for me

to do. Just take your time, do what you can and enjoy what you do,

that is all any of us can do.

Tom

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