Re: be active

[Guest guest]

Hi Francesca,

I'm soon to be 60. I have HNPP type of CMT, had genetic test thru Athena

lab. I Was diagnosed with general CMT 6 years ago, at which time I wore

heels. 18 mos. ago I started using a cane, about a year ago a walker and

now I'm ordering a wheelchair. My balance is completely gone. I have

severe carpel in both hands for past 6 months, having surgery soon.

I think I was able to 'compensate' for a long time and didn't realize it.

But when I got bad, it happened FAST. Now I'm looking at disability

because I can't drive, walk, perform simple tasks, etc. My neuro is

great, told me from the beginning there is no cure, but lets me tell

him what I need and when I need it. When I finally said wheelchair, he

didn't hesitate. I told him the kind I want and he wrote the

prescription.

I am EXHAUSTED trying to drag myself around with the walker, and the

motorized chair will improve my quality of life big time.

So be as actiive as you can for as long as you can. And when you need

tools to make your life easier, don't hesitate to ask for what you need.

Do lots of research, learn everything you csn about this

disease...knowledge is power. :-)

Jeanne

[Guest guest]

Thank you so much Jeanne for your email. You sound like you have a good

neuro. I see mine tomorrow for an EMG on my hands. All of a sudden,

wedding ring is huge and they look like skin over bones and the irony is that

in

the last year I have gained 20lbs. I know for the CMT that is not good but

I just can't seem to get my act together to lose it. I work out doing low

impact aerobics and I have a stationary bike with a skier function and I

use that too. I have a soft black ankle brace the foot doctor gave to me

but when I went to look at the more complicated brace, i knew i would not

wear it..at least not now. The technician agreed that it was a Cadillac sort

of speak when i needed maybe a Toyota for my problem. I have been granted

disability in the state of CA. I have this challenge since 1977 but always

worked and drove my stick shift car no problem. I still can drive but

when I lost my job it was impossible to find another one that could

accommodate my limitations and when the employer sends you for a physical and

you

fail, well........and I do need to bring the cane with me if i am having to

stand in one place for a bit because then I can't balance myself and have to

pace and keep moving to stay on my feet. I also will start having DNA

testing mainly because i want to see how this might affect my grand children.

We can find no family members who even come close to have something like

this.

Thank you for your support and anything else that you can ever tell me is

greatly appreciated. I know I should have sought support years ago but I

just sort of pretended that nothing was wrong which is good because I have

not let it defeat me but now i know something is changing and is different.

Francesca