a little CMT biography

[Guest guest]

Hello the House,

For those of you who would like to know a little more about the silent

ones, this is for you:

I have CMT1A (mild compared to a lot of you here) and it has been with me

all my 70yrs. Upto about 17yrs. I was very athletic, big into sports. I had

all kinds of speed running, could throw a football with deadly accuracy. I

even had a scout from the Chicago Cubs interested in me. Then I started

turning my ankle frequently, kept falling down, and the bottom of my feet

begin to burn. The right foot started to turn in and over at the ankle, and

within a year I had a partial fusion on the right foot. That ended any

thoughts I might of had of becoming a Pro Athlete. From that point on and

for a number of years I had trouble with finding the right shoes and

orthotics they made steel insoles then. Some times I would come home from

work, standing all night and just collapse in a chair and not move till my

feet stopped hurting. Ever see a grown man cry. Man, I came close to it.

Well, I got through that phase and went on with life. I was always an

excellent swimmer, so I joined the YMCA and worked out there. I belong to the

“Y†of and on till about 4 years ago to my sorrow, I gained quite a bit of

weight. While at the “Y†I not only went swimming but worked out with

weights. Three times a week, a different muscle group each workout,

usually three sets, eight reps. each. I'm talking the whole nine yards,

squats, etc. Then I begin to notice my grip limited me in what I could lift.

I never really knew it was that weak till I started lifting. I also found

that my recovery time was getting much slower too. I backed away from the

weights and stayed with the swimming and bicycling. No problem there. I do

have numbness in the right hand running from the little finger to the outside

of the palm almost to the wrist. My feet are partially numb. There have been

times when in going to bed in the dark I could not tell if I

had socks on or not without feeling for them. I have had a more recent ankle

fusion (1993) with much success. I wear PM Minors(shoes) w/ a formed

innersole and the right shoe is built up because I lost a 1/2 inch from the

operation. I have two fingers that are contracted and a third starting. My

grip has weakened to the point where my wife has to open the little creamers

they give you in the restaurant, etc. I no longer can control my grip on the

golf club. For those of you who know golf, I am trying the baseball grip. I

have what I call phantom aches and pains. Id be sitting here minding my own

business and wham! for no reason at all I will get some sharp pain in my

leg, or in my elbow, in the foot, shoulder, etc. but I don't ever have a

consistent or persistent ache or pain. I have lost quite a bit of hearing. I

seem to have extra sensitive skin. where it will hurt to touch something with

a small amount of pressure. I thing my skin is also getting thinner I would

say at this point in time my hands are the problem as mentioned above. I

have lost pincer grip(finemotor). My ability to manipulate my hands at all

are nil. I use an automatic shuffler when playing cards. Although my feet

are deformed as of most CMTers they do not bother me.

I really believe that in the not to far future there will be a cure/help

for those who have CMT and other similar diseases, I might not see it myself

but I believe most of you will.

My prayers each night are ones of thanks, for I am lucky when I look

around

Love to you all,

E