Intro and questions

[Guest guest]

Hi, everyone. I guess I did something wrong yesterday and didn't post

when I thought I did. Then had to run out. So... trying again

today. I'm new to the group, but already have gotten some good

insights. Thanks.

I'm female, 61. Diagnosed about 10 years ago with CMT II. The Dx gave

me answers to really my whole life -- like why I had fallen a zillion

times, why I couldn't do sports, why I couldn't get past a certain

point in piano playing no matter how hard I tried, etc, etc, etc. I'm

sure you know the routine! So the Dx was a good thing. Through the

ten years I have finally found some (a few) sensitive and informed

doctors who know what the thing is, first, and who give at least some

reasonable advice about dealing with it.

Unfortunately I waited way too long (I think) to get orthotics with

the result that my knees are shot, I think from trying to compensate

for pronating feet and simply wearing out in the process. Have others

had this happen - that the knees are gone, or painful because of

deterioration? Really until the knees got so bad, the CMT was

manageable. Not good, but manageable. I have just learned not to do a

lot of things, and learned that in fact I can't do a lot of things

and it causes me pain or falls or soreness when I do them.

The orthotics are good, but foot drop and deadness in one foot has

progressed to the point where the orthopedist is recommending an

articulating AFO for that foot. I would love to hear from others who

have that kind of brace. I haven't ordered it yet because I've got a

knee brace on the other knee and it's a monster. I don't think I can

wear both at once and expect to walk and must wear the knee brace to

alleviate pain in the knee. By the way, it's a " G-II Unloader " in

case anyone has one. For pain relief it is wonderful!

Shoes are a continual problem, especially since I still work full

time in a business environment and would like to be able to wear

something that's not a boat. Any ideas would be welcome, especially

re what works with an AFO.

What do you use for pain? I have found anti-inflammatories, both OTC

and prescription, to have so many side effects, especially edema. I

take a lot of tylenol and a few anti-inflams when I feel desperate.

Don't want to take a pain killer that knocks me out for driving,

working, etc. Any ideas, experience?

As far as CMT itself, my feet are the worst. I mentioned pronating

and have orthotics which help a good deal. One foot is getting dead

from tips of toes about halfway up the foot. It has feeling, but

doesn't work well. Lots of muscle wasting, I guess. Lots of foot

drop. The other foot is much better, but the big toe is getting

weaker. That's the way the other foot behaved at first. Very high

arches.

Hands - I see a lot of wasting, but not clawed yet. Still type a lot

on computer keyboard, although I'm not as accurate as a few years ago

(thank goodness for spelling checkers, etc). Can still play the piano

fairly well, although can't do rapid, finger-exercise kinds of

things. Must be careful about what I lift. Also, if I type a good

deal in a day, my lower arms will ache in the evenings.

BTW, my mom (85) has a lighter case of CMT than I, but did test

positively for it. However, she has an extreme curvature of the

spine. I think it's the CMT and not osteoporosis. Any stories about

spines and CMT?

Finally, what do you do for exercise? Weights? Swim? Walk? What? With

my knees so shot, I'm having trouble with anything I can do without

causing myself much pain, except I do have some exercises that I do

sitting or lying down that were designed for folks with bad knees.

What has worked for you? Cheers. I look forward to your replies!