CMT or PN question. Feet, JOY

August 1, 2000

First, I have a cousin who has a peripheral neuropathy that he claims

is from Diabetes, Type II. I think he has CMT, because I think it's

that side of the family where the gene might be. He thinks diabetes-

PN is different from CMT. Does anyone have any info on that?

Next, Feet! I have gotten such terrific info from you guys in the

short time I've been a CMTUS member. Thanks!! I would like to hear

more about the way the disease progresses in the feet. Here's mine:

one foot is much more progressed than the other. But on both feet,

the numbing began in the big toe, and traveled upwards into the foot.

I do range-of-motion exercises to try to keep something going, and

certainly notice a great deal of difference in the two feet.

Sometimes I think I'm just beating a dead horse doing the exercises,

but they don't cause me pain, so for now I'm keeping on.

Also, I have this little thing I do as an observation: with bare

feet, I tap my heels on the floor, trying to keep feet rigid. I

notice that the big toe on the worst foot is just floppy. Sometimes I

can't believe that's my foot, because it just sits there and flops!

like it's not part of my human anatomy, but just an appendage that

happens to be attached (like a big wart!). Hope that makes sense.

That's the way I see it.

Will this continue - is that your experience? And is that gradual

numbing what leads to AFOs, fusion, etc.? I welcome your comments.

BTW, so far hands are not numb - weak, yes, but not numb.

Finally - I saw a really fun concert last weekend on PBS - it was the

Boston Pops and their guests were the folks from Sesame Street! It

was a delight! When my daughter was tiny, Sesame St. was still a

daily program. We both watched it and loved it! When I saw the Pops,

I thought what a neat thing Jim Henson had done and how, for years,

Sesame St. characters have been the " differently abled " folks. I

thought of Kermit The Frog - " It's not easy being green, " Big Bird,

who has always had foot (and body) problems and how utterly wonderful

he has been with all that. Anyway, I'm not sure which was more fun -

the SS characters, or the shots of the wonderful faces of both kids

and adults watching the show! Hope y'all saw it too!

Warm regards to all, Carolyn

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