Yet another My introduction

[Guest guest]

Fellow CMT-folk,

I've responded to a few messages and now it's time for my own, long

winded, intro'.

I was diagnosed with CMT in 1978 at age 18. I was the first in my family

to be diagnosed. My parents complained about me being " stoop shouldered "

(i.e. not standing up straight) and took me to the doctor's to be

examined. Like so many family members on my father's side, I already had

" Krepps foot " - a family trait which was a high arch + " hammer toes " + a

wide but short foot and a moderate tendancy to walk on the ball of my

foot rather than plant the heel. Miliatary records from the Civil War

indicate there may have been foot problems with predecessors. Further,

it has been hinted our unusual stride may go back even further.

Interestingly, the doctor who diagnosed me only took a minute or less to

determine what I had. It seems there's a significant number of people in

York County, PA. with a similar/same affliction.

In my late teens/early 20s, I was taken to the Alfred I. DuPont

Institute for several visits. Endured an EMG, got flexible foam arch

supports which I still use 20 years later. Nice people. Go there if you

get the chance. I'm sure it's even better since I was there.

I've never been " athletic " , often the last to be chosen for a school

yard game, if picked at all. Until my early 20s, I was thin. It was

depressing to go bicycle riding after I broke up with a girlfriend who

also like to bike ride but I kept eating the same amount, thus I picked

up a cheeseburger chin and a good 30-40lbs on my 5'6 " frame. Not good.

Fast forward ~20 years to now. I still have my beloved 1981 Peugeot

racing bicycle. Though I knew when I bought the bike that I'd never be

competitive, it was my way of (literally) running over CMT. To H*ll with

it! I'm riding!! I was able to ride 20 miles at 18mph without falling

over when I got off the bike. I _finally_ got back on it after really

sporadic riding over the past 3 years. On my 4th ride this year, I'm up

to 12 miles at just over 14mph average speed. I really can't encourage

you enough to consider bicycle riding to combat your CMT!! (_Always_

wear a helmet - 80% of bicycle injuries are to the head!) It's great for

your heart, your arms, your hands, your ankles, your feet, your balance.

" Just do it " I tried skiing too. I haven't been out for several years.

I got really sidetracked from bike riding for the past 5 years by " disc

golf " (a.k.a. " Frisbee golf " ). Disc golf is becoming very popular. It's

cheap to get into (most people have at least 1 frisbee) and it's often

played at state parks. High tech discs run $8-$15 and fly incredibly

well compared to the clunky " Frisbee " discs. I've got a dozen or so good

discs. Check pdga.com for more info' on this incredibly addictive sport.

(Once/year for the past 5 years, I play 100 holes in 1 day as a

fundraiser for MDA or the MS Society.)

I've had a long intro'. Hopefully it all makes it to the list BUT

there's a reason - to encourage each & every one of you to get out and

do _something_ to physically and mentally beat your CMT! No flippin'

surrendering! This means _*YOU*_!!

Yeah, I tend to fall a lot. I've 'learned' to drop to the ground rather

than do a cartoony, off-balance, 100' dash to catch my balance so I

don't hyper-extend my knees. It ain't pretty but it works. I can only

throw my discs 150-200' whereas non-CMTers chuck theirs twice that

distance. You won't see me challenging Lance Armstrong up a mountainside

but you will see me out there, doing what I can. (I _did_ compete in 2

" Citizen's Class " bike races in the early '80s - stinko results but I

made the effort.) I also load & deliver 300-580lbs. of books 1 or 2

days/week as part of work. Good exercise for the hands.

I've got CMT, Dad has it, it's very likely all 3 of my siblings (1M, 2F)

have CMT. I've got cousins who have it worse than I do yet other cousins

who really don't show any signs.

Feel free, at _any_ time, to contact me with questions or comments. I

will especially warmly welcome any questions or comments about how faith

has helped me through this!

God bless,

Joe Krepps

P.S. Pick up one of Mattie Stepanek's books and read it!