motivation and overcoming adversity

[Guest guest]

Hi Greg,

Your English is good. Do you live in the US?

I'm 44, was diagnosed with CMT at 18 - the first in my family. CMT is

especially strong in my family from a generation-to-generation and among

siblings standpoint. Some of my relatives are more severely affected

than others. I do not know what " type " of CMT and, to me, it doesn't matter.

> I think the disease sucks, but on the

> other hand it gave me something I wouldn't have got otherwise -

> Motivation!

May I suggest it not only provides motivation but forces you to deal

with adversity on a daily basis. Overcoming adversity, your attitude,

will serve you well in the years to come. That gives you an advantage

over someone who's had an " easy " life because sometime, _everyone_ will

have to deal with adversity. You will know how to deal with it, they

will not.

> Since I've got CMT, or since I noticed I have it, I

> really achieve almost everything I want to becaue the way of

> thinking to never give up pretty works on me.

Correct!

Our 'fallen hero', Mattie Stepanek, is an awesome example of someone who

could have given up but did not. I encourage you to read more about

Mattie at the mdausa.org website and buy some of his books. He didn't

have CMT but his story is inspiring and his poetry is outstanding! I

don't mean to imply that Mattie was much worse off so you should not

feel bad but if you examine his life and his attitude towards life, it

may help you to overcome the sad times in your life. , the son of

my ex-wife has physical + mental problems which add up to ~20. He has

outlived 3 prognoses by age 7. He is now receiving " supportive care " but

he inspires me to go on. I haven't seen him in over 2 years.

> I smoked for 9 months

> but quitted it and never smoked a cigarette again, I drink barely

> alcohol as well.

Excellent! I feel it's essential to keep your body as healthy as

practical. You can't stop the CMT but you can choose to stop smoking.

I, too, sometimes have jerking or twitching in my fingers. It comes, it

goes. If it concerns you, talk to a doctor. I probably am more likely to

have jerking over the winter when I'm less active physically. A friend

of mine suggested " Valerian root " as a muscle relaxer. It may help you

sleep better too.

You can't outrun your fears of living alone, unloved, in a dark place

but you can put them in perspective. It's possible you may end up that

way BUT those days are very far away. The changes that will take place

in your next 19 years may well completely change how you perceive the

future. Personally, I found that somewhere between 18 and my mid-20s, my

whole perception of the world changed. It changed again in my late 30s.

Though appears to focus on practical, every day soltions and

medical news announcements may I also suggest a heartfelt search for the

true God? Feel free to contact me directly about that. This is an

important aspect of how I deal with CMT and adversity!

Gretchen has some fantastic advice on how to cope with CMT! Check her

posts for advice. Personally, though I am NOT the person you want to

carry a piano, downstairs, walking backwards...there are many things I

can do. I enjoy bicycle riding (road, not dirt so I can go faster!) and

disc ( " Frisbee " ) golf but I'll never be competitive. I do it because; 1)

I can and 2) for those who can not (sometimes as a fundraiser for MDA &

the MS Society).

Best wishes on your goal of being a director & God bless,

Joe