Welcome Kenny

[Guest guest]

Dear Kenny,

I am so glad you found us. We are all in this together. Maybe you can help

some of us who might be interested in your integrated approach. For myself,

I also developed a huge cushionoid hump on the back of the neck and had quite

a large round face, but am now still losing weight and feeling better. Since

I was ten years old, I had been shot full of steroids several times a year -

along with a boat load of very potent topical steroids. Once or twice a year

I also end up on Predisone for allergic asthma which can bet especially bad

when one lung is the only one working well. Oh well -- that is another story

for another day.

Keep in touch!

[Guest guest]

Hi Kenny and welcome. At one point I was diagnosed with Frederich's

Ataxia, which has now started to mimic CMT. At one point my CMT had

prounounced ataxia = the doc defined ataxia to me as a problem with

balance and coordination. Some of the pool exercises I do now are

specifically to help this and they have.

Hope you find our group hopeful and helpful.

~ Gretchen (Founder/Moderator of )

[Guest guest]

Kenny:

We seem to have a lot in common, but not quite the diagnosis. I have

CMT and Meniere's Disease. My ears refuse to send good signals to my

feet that couldn't carry them out anyway!

I am 61 and diagnosed five years ago as you were. We may share some

genes dating back to the primordial ooze.

--Larry

[Guest guest]

Hi Kenny

So glad to have you on this list It's 'refreshing' in an odd way to

realize there are many other types of disabilities that leave many of

us facing the same challenges.

I 'only' have CMT, so far I still live a relatively normal life. I can

breath fine, swallow fine, my hands still work pretty well. I use a

crutch or wheelchair to get around. Most of the time I do fine,

sometimes I 'hit a wall' and get depressed for weeks, or suddenly feel

that I am having more difficulties, etc. I guess we have to go forward,

though, huh?

[Guest guest]

Thanks ,

I go in a power chair allot, I remember the skinny wheels on my grandpa's chair,

he had the same symptoms, but I don't ever remember hearing the word ataxia. My

dad died of other causes before the symptoms showed up. So my brother and I were

the first in the family that were diagnosed. It hasn't shown up in any of our

kids yet.

I try to stay busy doing something, still the best medicine. I finished a wind

chime today, I've been experimenting with. I can still drill holes and put in

screws, but forget hitting a nail with a hammer. I used to be a machinist and

welder at one time. It gets in your blood, sometimes I sit and think all day

before I can figure out how to get something done.

I am trying to live alone again, that's the hard part. I don't drive anymore, so

getting a ride is kinda iffy. This county in Missouri is of no help whatsoever.

Kenny

[Guest guest]

Hi, Kenny;

My name is Dennis and I am going to assume that you have CMT and it has affected

your hands, right? My hands are also affected. Fortunately I can still use

them to make things. What made me want to write to you was the fact that your

in Missiouri and can't get much help.

You must be trying the wrong avenue, or approach. Do tou attend a church?

Within the walls of a church are many loving and kind people, I'm sure you would

not have any diffiiculty finding a ride, or other services you may need.

Sincerely, a fellow cmter,

Dennis