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Sender:
"St. John's University Cerebral Palsy List" <[log in to unmask]>
Date:
Tue, 5 Mar 2002 10:30:36 -0500
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"St. John's University Cerebral Palsy List" <[log in to unmask]>
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From:
Brent Edwards <[log in to unmask]>
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First off, thanks to everyone who sent welcoming messages, words of
encouragement, and valuable info about the list. I do sincerely appreciate
it. A few of you asked specific questions, or made comments I feel warrant a
response. I'm going to cover all of them in one mega-post to keep everyone's
inbox traffic down a bit.

Thanks to Mike for the abbreviated cast of characters. That kind of info is
especially helpful when one joins a list.

Carla MacInnis wrote:

>   The over 40 crowd hanging about here can no doubt teach you a lot :) Did
> you have any sort of therapy as a child? How was your school
> life, etc. You must reveal all :)

Very little, at first. I was born in rural eastern North Carolina. My mother
had to drive 30 miles to get to the closest orthopedist, who came up with my
initial diagnosis. It didn't take her very long to see the "therapy" he and
his staff offered wasn't doing much - if any - good, so she soon took over
and did it all at home.

When I was 12, I was used basically as a guinea pig by a brightboy young
orthopedic surgeon who thought he'd come up with a surgical procedure that
would allow me to fully rotate my right wrist. It failed miserably, and it
took me a year of intensive PT just to get back to almost where I was before
the surgery. I NEVER got all the strength/mobility back.

My mother is a stubborn, driven woman, and  her attitudes probably served me
well as a child: No programs for "special needs" children or "special
education" for HER boy. I was "mainstreamed" long before the term was
invented.

Which, as it turned out, wasn't a bad thing. My mother rebelled at the
idea - common at the time as I'm sure you all know - that cp automatically
meant cognitive problems as well. She taught me to read at three, taught me
to play piano (albeit one-handed) and read music at four, and then dared
school officials to place me anywhere but a regular classroom under threat
of legal action. This was unheard of in 1967.

True, I suffered unmercifully at the hands of the other kids, but as bad as
I hated my mother at the time for forcing me to go through that, it was for
the best. I understood immediately that I was different in a world that was
terrified of differences.

>   The medical community seems not to really know what to do with us so by
> trial and error we often find it necessary to make our own way. Some of us
> tend to feel more comfortable going with the traditional "doctor drug"
> regimen of management when it comes to coping with age-related symptoms.

I haven't chosen *any* regimen as of yet. That's one of the big reasons I'm
here. I am deeply suspicious of - ok, flat out hostile to - the medical
profession generally. It was the incompetency of a dottering old backwoods
obstetrician that created my condition in the first place. A smug surgeon
almost robbed me of what little control I have of my right hand. Now they
just scratch their heads and tell me they don't have a clue how I'm going to
age.

I see a doctor when I am ill - usually only when VERY ill. The rest of the
time, I stay far, far away.

> Speaking of food, do you have any good recipes?

I love to cook, but I am not a recipe kind of guy. I'm one of those
annoyingly smug people who can walk into a strange kitchen, poke around in
the fridge and pantry for a bit, and then produce a fair meal in an hour.
<grin> My wife hates me for that.

Joanne wrote:

> I've been lurking for quite sometime (years, I think) but I figured since
> you were introducing yourself, I might as well introduce myself.

Well, I'm very glad my decision to come out of the woodwork precipitated
yours. <smile>

Kenneth L. Barber wrote:

> i did everything except fly a plane, jump out of them and get
> into the navy.

I actually did manage to get a private pilot's license in 1992. Learning to
fly was relatively easy, but the letter/phone/fax battle with the FAA over
issuing me a medical was a nightmare that took more than six months. <sigh>

Now jumping out of them is a totally different matter. Not very many pilots
are skydivers. The prevailing attitude among pilots - which I share - is why
on earth would anyone want to voluntarily jump out of a perfectly good
airplane? <grin>

Thanks again for all the responses. I look forward to getting to know you
all better.

Brent

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