Hello

[Guest guest]

Hello. My name is . I glad this community is here. We all need that

positive aspect in our lives. I have been tested for CMT. My MDA neurologist

tells me that my neuropathy is definitely inherited and is a 99% chance of being

CMT. The neuropathy is severe but that depends on ones attitude and what it is

compared to. My whole body is affected. I have worn AFO's now for over ten

years. I am in the process of getting new hinged AFO's and have splints for my

hands. I wish I could find more to do for my hands because the muscles are

gone. My right shoulder is a problem because my muscles are not doing their job

and the bones are rubbing together at the joint. I try to keep up with my

physical therapy and have swim therapy three times a week. The therapy is

helping but it is time consuming. I do have some minor vision, swallowing and

breathing problems. I have lot of determination. I am disabled now but am

continuing my career through writing. So I hope to find some solutions to some

of the things I am working with. I have met another CMT person and we are in

process of setting up a support site in our town with the help of the MDA . I

will continue to stay in touch.