living with CMT uncertainty

October 26, 2002

Britt,

Living with the uncertainty of our CMT can be difficult. Being that we are all

unique with symptoms and genetic heritage, no one really knows where we

are going. I too, like Gretchen, had a lifetime of doctor's predictions about

what would happen. Yes, it scared me. But when I figured out that my doctors

knew very little about CMT in the first place I wondered how they knew these

fatalistic concepts.

I am happy to tell you, none of their predictions has taken place. One Dr. even

told me not to swim! I have been swimming (laps) just about daily for 25 or so

years. It makes me happy, I swim at my own pace, stop if I get tired, and it has

helped keep my strength up and also helps me live with a positive attitude; as

exercise creates those 'endorphins' - good chemicals moving around in my

brain.

Long time ago after my initial diagnosis as a child, I crashed into a very deep

and black depression because of knowing I had CMT, no cure was around, and

I was extremely fearful and worried of 'what would happen to me'. I dwelled on

this for a long time.

In college I joined a Koinania group that helped me, my thoughts and attitudes

greatly. It gave me some new positive friends, and was a real 'lifesaver'. I

also

attended motivational speakers and my worrisome CMT thoughts weren't so

strong. It was enlightening to realize that my mind's thoughts had such an

effect on my physical body. Now, this didn't take away my CMT by any means,

but I had some 'tools' to stay out of fear, worry and depression.

Gradually, over the years, with college, work/career, family, and life, I was

living a 'normal' life and the dwelling on CMT and the 'what if's' dissappated.

I

am older now and having lived with CMT a long time. Nothing I thought would

happen has happened.

So if I can offer any words of strength, learn as much as you can about CMT. Be

careful not to compare your CMT with others, but relate to the thoughts and

feelings shared here. I also tried some TM for awhile and now do some Yoga

2X a week where we also concentrate on the mind/body connection.

Hope this helps.

Anne

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