Introduction

[Guest guest]

Good Evening to all, hope you each have had a fine day.

I have been reading your posts, reasurring me this is the group for me. I was

diagnosed with CMT last Oct., though I am sure I had it for years.

If I may let me tell you a little about myself. I am disabled, not from this

disorder but from another called Chiari I. This is a disorder where the back of

the skull is too small for the brain, there for pressing against the back of the

brain, blocking the flow of spinal fluid from coming down the spianl cord.

Therefore causing a back-up of spinal fluid in the brain. I have had a surgery

in 2002 which the Neurosurgeron removed about the size of a base ball from the

back of he skull, then patching it. This disorder caused many neurological

symtoms. Chairi is closed to being proved genetic- I say this because CMT is

listed as an associated order. My daughter had Chiari and 3 other cases in my

dad's family history.

I am just learning about how debilitating CMT can be. I know very little on how

to fight it. I do know from nurses school if you do not use a muscle you loose

it, but when them nerves tighten me down it is hard... to deal with....I do walk

every day and my orthopedic doctor has prescribed physical therapy for me.

Along with these disorders I have--DDD---ADDISONS

DESEASE--SCOLIOSIS--FIBERMYLAGIA--HYPOPITUATARYISM--(MALFUNCTION OF GLANDS).

My secret to coping is to consider them all a challenge. One day at a time. If

that I can accomplish one thing thats is positive. I learned to accept the bad

day and just rest. Knowing it shall pass.

I too like some of you are thinking about when to make a move for more help. I

have read much about Indpendent assisted living--where you keep your

independence but if you need help wih shoping, doctors app., meals, etc.

Good Evening to all,

Cheryl