severe CMT

[Guest guest]

I am 60 years old and have been diagnosed with CMT for 8 yrs. The

atrophy in my legs has progressed very rapidly. I have been in a

wheelchair for a year. My right hand is very weak and of course, I

am right handed. I too, like many others, wonder what the future

holds for us. I have been taking 9000mg of Vitamin C for 2 months

and have noticed a slight difference in the strength in my right

hand. I also take 1800mg of neurontin which helps with pain,

tremors, etc. In the coming years, I believe there is hope for you,

like Gretchen says, NT-3, stem cell, VitC, look promising for the

future. You learn to adapt, mentally and physically. Hang in there,

there is hope in the future. Dennis

[Guest guest]

My understanding of " severe CMT " from reading the Rehabilitation Book

is that when atrophy goes from distal to proximal, then that changes

one's ADL. That book Gretchen refers to also mentions the 7 stages

and 4 stages of CMT for hands which I found very interesting and

helpful. I am mostly affected now, and have been for some time mostly

in my feet and peroneal muscles of my legs. My hands seem OK; now and

then I drop things, but I think this is due to holding or carrying

too much at one time and in my worst defect, being in a hurry.

MT.