Growing up with CMT

[Guest guest]

Dear CMTers:

New Year's Greetings from

My case of CMT came on strong beginning when I was but five or so. By the

time I reached the eighth grade, I could no longer wear leather shoes because

my arches were so high and my toes took on a very hammer-like shape. I

attended high school wearing " tennis shoes, " a sort of athletic shoe. In early

high

school, the county nurse arranged a visit to an orthopedic clinic sponsored by

the Children's Research and Education Medical School from the University of

Illinois. They immediately diagnosed the problem and recommended surgery on

both arches to reduce their size.

Thus ended my age of innocence. Going to Chicago from downstate was like

going to another world.. My family had no resources to get me there or

accompany me on the trip. A church group heard of my plight and collected just

barely

enough for me a train ticket round trip.

To make the story a bit shorter, I will say that I rode the train there

and walked from Union Station to the hospital, a distance of several miles.

..The surgery was performed-it was very painful-, and I was afraid and so alone,

except for a dozen or so boys who were there in the ward for various

orthopedic problems of their own. It seems as though when there is difficulty, I

was

frequently alone.

After three months, I walked out of the hospital, back to Union Station–

with walking casts on both feet–and went home on the train .Later, I returned

to have the walking casts removed.

Still later in life, I had some tendons in my feet and hands

transplanted.

All this allowed me to retain some mobility and dexterity to eke by in life.

Still I am able to drive, mow the grass and do many chores around the house. I

taught school, was an administrator and counselor for more than forty years.

At a later time, I will ask, " Can there be a silver lining with CMT? "

May each have a safe and good New Year; maybe this year there will be

progress on a cure for CMT.

We can hope,

in the Land of the Illini

[Guest guest]

Hi ,

Your story touched my heart. Hopefully in our modern times a child will

never have to go through what you did. Sounds like you made the best of

your challenges. I applaud your accomplishments.

Praying for a cure!

Hugs,

Barb

Dear CMTers:

New Year's Greetings from

My case of CMT came on strong beginning when I was but five or so. By

the

time I reached the eighth grade, I could no longer wear leather shoes

because

my arches were so high and my toes took on a very hammer-like shape. I

attended high school wearing " tennis shoes, " a sort of athletic shoe. In

early high

school, the county nurse arranged a visit to an orthopedic clinic sponsored

by

the Children's Research and Education Medical School from the University of

Illinois. They immediately diagnosed the problem and recommended surgery on

both arches to reduce their size.

Thus ended my age of innocence. Going to Chicago from downstate was like

going to another world.. My family had no resources to get me there or

accompany me on the trip. A church group heard of my plight and collected

just barely

enough for me a train ticket round trip.

To make the story a bit shorter, I will say that I rode the train there

and walked from Union Station to the hospital, a distance of several miles.

..The surgery was performed-it was very painful-, and I was afraid and so

alone,

except for a dozen or so boys who were there in the ward for various

orthopedic problems of their own. It seems as though when there is

difficulty, I was

frequently alone.

After three months, I walked out of the hospital, back to Union Station–

with walking casts on both feet–and went home on the train .Later, I

returned

to have the walking casts removed.

Still later in life, I had some tendons in my feet and hands

transplanted.

All this allowed me to retain some mobility and dexterity to eke by in life.

Still I am able to drive, mow the grass and do many chores around the house.

I

taught school, was an administrator and counselor for more than forty years.

At a later time, I will ask, " Can there be a silver lining with CMT? "

May each have a safe and good New Year; maybe this year there will be

progress on a cure for CMT.

We can hope,

in the Land of the Illini

[Guest guest]

,

While I am not sure what we are considering an " oldee " here (lol), I too

grew up with the disease - even in the 1960's not much was known and

neurology as a science was in its infancy.

I can totally relate to your first surgery and with it the end of the

age of innocence.

The story of my life - " it seems as though when there is difficulty, I

was frequently alone " ; wow, can relate to that on many levels too.

Would you say your early surgeries were more of a help to you than a

hinderance?

As for a " silver lining " - guess I choose to be optimistic about new

treatment paradigms like the Hedgehog Protein and NT-3 and others that

are able to regenerate nerves. Imagine my excitement, after living with

CMT 42 years when I read the first report on the successful nerve

regeneration of NT-3 trials in CMT 1A!!! Now that IS major progress, and

I know more is coming. So, ready or not, I'm going to greet that " silver

lining " one of these days!

~ Gretchen