Re: welcome Rob/marriage and CMT

[Guest guest]

Welcome Rob-

What a great guy you are! Ask us what you want and you'll

definitely get feedback from this group.For starters be attentive.Help around

the house and don't be condesending.Any person who has a problem has to make

mental changes as well as physical.Our CMT bodies are running on half a battery

to start with so you can imagine by days end we are pooped!

I was 31 when I stopped working and that was not easy to accept. But at least

for me I had 2 young school age kids so I was able to become very involved with

their school activities plus the PTA. Then I loved being a stay at home mom.

Best of luck and many good wishes to you and your girl.

Barb

[Guest guest]

Welcome Rob,

I hope you get the help you are looking for. I myself is the one with CMT in my

reltionship and my wife is wonderful. She picks up the slack when I cannot do

it. She does not " nag " me when I can't get projects done because I need to nap.

Some days I come home and I am so tired all I do is sleep for the first hour and

then I get up and do stuff. She understands CMT very well and knows I can only

do so much.

The best advice I can give you is to be very patient with her and try and pick

up as much slack around the house as possible. As far as the work thing goes.

If she cannot go out to work try and do some research on building a home base

business and then she can do it at home on her own time.

Good Luck

Matt

[Guest guest]

Rob,

I'm 43 and in the process of quitting work. Actually, my doctor took me off

work last week and it's now an emotional roller coaster. My husband has always

been VERY helpful and supportive of my CMT and issues. He does most of the

housework (ok, he doesn't DO

housework -- we pay someone), yardwork, and childcare...but for

some reason he was very shocked by the fact that my doctor (and I) believe it's

time for me to quit work.

I guess what I'm trying to say is that since changes happen so gradually, those

closest to you sometimes forget that you are suffering from a neuromuscular

disorder.

Co-workers and friends often don't even realize you HAVE a disorder since, as in

my case, the physical signs of CMT can be outwardly hidden to others. I've had

a friend argue with me about whether I should take up a handicap parking space

when people on crutches

might need it more. I said that if they are able to use crutches, they

definitely don't need it as much as I do. That evening she saw my feet. The

next day she helped me find the handicapped parking spaces

CMTers aren't lazy or depressed (although some may be) or disinterested. They

simply can't do some things that 'normal' folks can and they don't always even

realize that normal folks can do those things. I feel bad when I can't help my

husband around the house

which puts added stress on me. Outwardly, he's very understanding but I always

wonder if he doesn't think I may be a bit lazy...

Even my mother (an 80 year old CMTer) always said that my older brother (also a

CMTer who retired early) didn't help his poor wife around the house enough and

that he was too lazy! Hmmm....

Be patient and understanding. At least you're going into this with knowledge of

the issues. My husband (nor I) really realized how much CMT would eventually

affect our daily lives. The more you or anyone can do to relieve the stress and

minimize unnecessary energy

expenditure from your fiancee, the better quality of life for the both of you.

And remember, physicians don't treat family members because they are too

desensitized to the issues/problems. Don't forget to remain sensitive

P.S. Suzanne -- My MRI was normal