Re: made own handbook for Dr. and family

[Guest guest]

Cathleen,

Great idea! What kind of an reaction do you get from doctors when

you give them the handbook? Can you tell us more abt the handbook. I want to put

a handbook together for the schools and scout leaders.

[Guest guest]

Hey Cathleen:

Congrats for your effort. Are you selling it? Lol ...

no offence ...

Cheers!!

Sameer

[Guest guest]

glad you enjoyed what i wrote about my book.Cathleen in arkansas

[Guest guest]

the charcot msarie tooth association has a doctors handbook full of lots of

clinical stuff. you can order them throught the association. my hand book is

full of things i learned from my doctors. it explains why I waddle like a duck

when iwalk, why my hands are folded shut sometimes and i try to explain in

laymanms terms why i can't feel much on my hands and legs yet i am in pain. my

family thinks the book is great. It helpsthem not to ask so many questions.

my nephew is a nurse and he loves both books. my dad was at a meeting one

night and a young man walked into the room, my dad was sitting by his father and

after watching the young man walk and move around the room my dad asked the

father if the son had CMT. dad said the father nearly fell over because no one

he

ever knew had heard of CMT before. so my little book helped my dad to see

how things are with me. The father and son have both gotten a kick out of

knowing he is not alone and of course my little book is filled with humor and

they

both liked reading it. my doctor loves thawt i update my little book with

shared information here in the group. I think it has been great to make abook

so

family doctors and friends can see me and hopefully undwerstand i am a person

not just the disease. this CMT is so personall and affects us so differently

i found that writing my booklet helped a lot. I have even showed it to a new

lady i met recently who has the worst case of CMT i have ever seen or heard

about, she is really crippled up in her hands and feet and she is deaf now from

nerve damage from CMT. She is now writing her own booklet to help explain to

her childrens kids what is wrong with there mom. Cathleen happy writing!!