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Re: looking to fit in

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Mike,

I don't know when you were diagnosed, but acceptance of CMT is the first step.

It takes twice as much work to do half the work for CMT muscles. Are you under a

doctor's care now or wearing AFOs? There's also other things that can help,

physically, emotionally, and spiritualy: diet/nutrition/supplements, exercise

gently to the extent you are able, write your feelings down in a journal, for

every negative thought, write one positive thought. Pray for courage and

strength to live a full life despite CMT.

Take very good care of yourself.

Gretchen

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Mike,

I would like to help.Dont worry about what other people can do ok.CMT affects

people in diffent ways.What are ur strengths.Do you work out at the gym or

home.Please tell me more about u.I use to be a personal trainer before.Dont give

up!

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Mike,

I at age 33 had to stop my job in construction.same deal.I know now

that my struggle was due to my CMT.knowing is great but IT STILL

SUCKS.knowing this and knowing that it is not going to get better in fact it may

even get worse.

you now have a choice of how you want to live.

concentrating on thhe things that are hard to do now,OR doing the

things you love to do.

im 39 now and am finally now working on my mind and going to continue forever.

if ya really want a great example of what a person can still do after having a

disability I urge you to google W and an guy named Maynard and

watch some of their videos.please do this.

Geoff

the CMT Drummer in Phoenix.

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Mike,

 

This disease not only takes a physical toll on us, but also an emotional one.

 

Every time we notice a new decline, we go through a grieving process all over

again.  Everyone handles it differently.  Some try to deny it.  Others try to

fight it.  But the reality is that it is slowly taking away our strength.  Even

for those among us who are handling it well, there is still likely to be that

little bit of sadness that hits when we notice some new limitation.

 

I found it interesting that you said, 'when you were younger you used to care

about life more'.  I noticed that same phenomenon in myself.  Not that I don't

love life anymore or that I don't want to live, because I certainly do.  It's

just that the weaker I become, the closer the end feels and the more ok I feel

about it.  When I was a kid, I can remember thinking that death was just the

most horrific thing I could imagine happening, but it doesn't feel that way

anymore.  I've now begun to relate to older people, who seem to be resigned to

dying.  Perhaps it's an ingrained, natural process within us that when the body

declines, the mind begins to accept it and it's not as upsetting.

 

Can you relate?  Is that kind of what you meant?  Either way, I'm interested in

your further thoughts on the subject.

 

One thing that I try to keep reminding myself is that my worth as a person is

not determined by my physical abilities.  I still have my mind.  I can still

think and still give love.  I can still help others.  I still have worth.  I

tell you this today and, on most days, I believe it's true.  However, on the

days when I can't get out of bed and I have to rely on others to help me do even

basic things, it's not so easy to accept.

 

But...most days I can remember that my existence still matters.  I hope you can

too.

 

 

From: mmadina1206 <mmadina1206@...>

Subject: looking to fit in

Date: Wednesday, July 1, 2009, 12:54 AM

Im 33 now. When I was in construction I didnt know why I couldnt be strong

enough to drive a nail in one -two hit. I didnt know why I would suffer so mucj

to help the guys carry 98 pound bags over my shoulders and they were able to. I

didnt always have this issue. Dont get me wrong I was stronger and cared more

aboutl life then now. But I just want some more answers than anything.I see my

life deteriorating before my eyes. Any feed back would be greatlt appreciated.

Mike

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Mike-

You have to look forward and you have to look at all the things you can do. 

Don't think about the past in a negative light.  Remember, if you didn't have

CMT you would have been able to lift those bags.  Keeping a positive attitude

makes this damn disease a whole lot easier to deal with.  I know, I'm 60 and

I've been there.

Lynda from California

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