Accepting CMT

[Guest guest]

Hi Dennis,

Acceptance of CMT and wanting more knowledge of it and wanting to help

oneself takes a long time. I was diagnosed when I was 10. I had PT and

more forced on me and I hated it. The only things I liked were swimming

lots and walking on the beach, because those " seemed normal " things and

I could do them with my friends.

I also felt I didn't need any 'help'. Except that when I was 15 my

fatigue was overwhelming to the point I couldn't enjoy anything -

school, work, family, dances, parties, etc. I reluctantly took a

medication my neurologist gave me and started on his potassium

supplements too. Only after that when my fatigue level was 'managed'

did I get the desired results. And I was living like a 'normal' teen.

I really hated all the doc visits though.

I don't know if I was in 'denial' or what. Long story shortened, it

wasn't until I was 27 that I finally discovered what true " acceptance "

means - and that was from a 12 step program. At the same time my father

died very suddenly and I had a wake up call - to be an adult. That's

when I also became very interested in learning about my CMT.

Maybe give your son 'time'. Make sure you keep up to date with CMT

information, research, etc., in the meantime. Hopefully your son won't

be as stubborn as I was and will come around in time.

~ Gretchen