Introduction

[Guest guest]

(This was sent to me directly by one of our new members, .

Welcome ! -- Gretchen)

My name is . I am 30 years old and have been dealing with CMT

since

I was diagnosed at age six. Not only do I have CMT, but I have

scoliosis as

well. Are the two linked, I assume so, but who cares at this point.

How

did I get CMT? Not sure, but probably hereditarily. At this point, it

doesn't matter much to me anymore. I have been dealt a hand in the game

of

life and I have to no other choice than to play that hand.

I will start by telling you about my history. By the way, if any of you

" newbies " (i.e. those new to the whole CMT issue) have a question about

my

experiences, please e-mail me. My address is at the end of this letter.

I was born in 1969 in Newport Beach, CA. As a young boy, I started life

with no noticeable signs of having CMT. Around four or five years old,

I

was having problems with some balance and I was often walking on my

tip-toes. As a result, the orthopedic doctor I saw put me into leg

braces.

This was to help my heal cord from tightening. Not fun for a first

grader,

but it gave me a chance to toughen-up at an early age. Later, I was

given

splints to wear in the even when sleeping. Definitely less fun than the

braces in the daytime. I would often wake up in the middle of the night

and

rip them off of my legs feet. The plastic brace/splint made my feet burn

from lack of motion. So uncomfortable that wearing them was not an

option.

At six or seven I was diagnosed with scoliosis. This introduced me to a

new

doctor who had actually performed corrective surgery on the daughter of

my

godparents (non-related). She happened to have scoliosis as well and

recommended this doctor whole-heartedly. This was a good thing because

is

gave me the chance to see one doctor and one doctor only. His name was

Dr.

Treat. A good man with a good heart and a doctor who knew what he

was

doing. He had a fiberglass back brace made from a plaster mold of my

torso.

This fiberglass brace attached the front to the back via rivets on the

sides

of the brace. It was almost like a tortes shell. A shoulder strap

helped to

keep this brace in place and I wore it from the beginning of third grade

until the end of sixth grade. Four full years in this brace and all of

my

classmates knew it. This was just another way to learn to deal with

criticism at a young age. I grew protective of myself and since I was

good

size, I had several fights to protect my pride. Fighting didn't help,

though. So I learned to let it go and it gave me a good chance to learn

how

to pick and choose my friends wisely. It also gave me a chance to build

strength within my own heart.

I remained active in sports during this period of time and thankfully, I

could remove the brace on my back. Luckily, I did not have to wear the

leg

braces any more from the time I started wearing the back brace. In fact,

I

was able to leave the leg braces behind from that point forward. Come

seventh grade, I was finally able to leave the back brace behind. It

was

determined that I, like the daughter of my godparents, would most likely

have surgery on my back to help my scoliosis. However, I would have to

wait

until I was fully grown. This was a blessing, but the problems with my

feet

grew worse. During the eighth grade I had my first foot surgery on my

right

foot. My foot had been losing strength and rolling to the outside.

Very

uncomfortable and there was nothing I could do to control it. I later

had a

second surgery on my left foot the following year, freshman year in high

school. I had been having the same problems with the left foot that I

had

with the right. Both of these surgeries helped, but they were probably

the

most painful things I had ever experienced, each over three month's

time.

Sophomore year, it was decided that I needed to have surgery on my back

for

the scoliosis, as planned. My feet had healed from the two surgeries by

that point. The surgery on my back was to straighten my spine as much

as

possible. This was done without the Herrington rod; a metal rod (or

some

other material) implanted in the spinal area to straighten the spine

almost

100%, if not 100%. My doctor was not comfortable with this method and

performed a spinal fusion. This meant that he took bone shavings from

my

hip and fused my vertebra (T6 down to L1) with the shavings. 10 days in

the

hospital and released on 4th of July 1985, I was then placed into a

plaster

back brace. It was mandatory that I had to wear this brace for eight

months. I got luck and was able to have it removed in just over seven

months. The back brace was a new challenge to deal with and earning

with a

growing reputation in school for having a series of medical issues made

me

want to withdraw from school activities and people. The time spent in

this

cast felt like a prison sentence, but I assure you, when the day came

for it

to be removed, I partied pretty damn hard. One more challenge to go....

That same year I had one more surgery on my left foot. This was to be my

last. In all foot surgeries, I had bony fusion and tendon transfers.

Also,

I had my heel cord lengthened. Each time gave me three months on

crutches

and lots of pain. However, I must tell you, that those months of pain

and

the hell spent on those crutches has offered me a great life for my

future

years. My ability to compete in sports professionally (my childhood

dream)

will always be a dream. However, I have remained active in sports with

swimming, mountain biking, skiing, surfing, body surfing, tennis, golf,

and

others to keep me stimulated. I have tried inserts for my shoes, but

discarded them for lack of motion and comfort. I prefer to have my feet

wear

shoes they way they were meant to be worn. Don't be afraid of this. My

experiences have let me learn that not all doctors are correct with

their

advice. I learned to think for myself and to let my body adjust and to

do

what is natural.

Truly, I wish that I never had to deal with CMT or scoliosis. Even

today, I

sometimes wonder what my life would have been like without either. I do

have bad days just as anyone else in this world, but when I ask myself

these

questions, I then realize to appreciate what I have been given in other

ways. I am so lucky to be able to walk. This is something people take

for

granted until they experience having to rely on crutches just to go to

the

bathroom. I am so lucky to have insight on the reality of the world and

the

love I receive from those with who I have in my life as good friends and

family. I am so glad that I appreciate the opportunity to make a

difference

and the drive to achieve my goals in life, knowing that if I could get

through the pain in my early years, I can get through just about

anything.

I have also truly learned that everyone faces personal, physical or

emotional issues in his or her life. No one is exempt from this and it

is

part of being human. The best thing anyone can do is to " mprovise " and

use

the disadvantages by turning them into advantages for one's self.

Today I am 30 and working in sales for a computer consulting company in

Irvine, CA. The future is unknown for me, with or without CMT. I am

glad

to see that I am not the only one dealing with this issue. I would like

to

be available to offer advice or answer questions to any of you who have

questions. Below is my e-mail address. Please feel free to write to

me. I

wish all of you courage and strength and the ability to continue to make

a

difference in your lifetime.

Schaefer

Slywho22@...