Emma, I don't doubt that you're confused with all those silly references.  I
acquired cp through theft and coercion, which is about the only way one can
get a cp diagnosis after about 18 months of post natal life (unless the
information I've read here or there is incorrect).

The truth: I was diagnosed with idiopathic peripheral neuropathy several
years ago, after a rapid decline in physical strength, balance, and stamina.
There is also pain, and a good amount of it too.  My legs and arms are
affected, so I can't stand long without pain that seems to take more of me
with each passing year, and my arms are a great deal weaker than they used to
be.  I used to be a crutch/wheelchair user, now I'm a wheelchair/crutch
person by order of preference.  I float between touch typing and dragon
dictate now, depending on how my hands are doing.  I still play my guitar,
but not so you'd notice ;-)  There is a bit more emotional pain in that loss
than I can describe.

The first problems I noticed were a loss in grip strength, a tendency to veer
off when walking instead of staying in a straight path, and incredible
fatigue.  I drop things a lot -- car keys, things like that. I don't even
know how to describe how bad the fatigue is at times.  That, above all the
other symptoms, has taken me out of too many of the important games of life,
like alligator wrestling, and working a nine to five.  I've tried a number of
volunteer opportunities but it always ends up the same way, and they end up
being discouraging experiences.  A trip to the grocery store -- even just for
a few things -- takes everything out of me.  My concentration is shot much of
the time as a result of all this.  There's just too much pain and fatigue to
cope with and it takes too much of me.

This is a condition for which my doctors have never been able to determine a
cause, which is the case in about a third of the people with this (again,
unless I've been misinformed by things that I've read).  Thus, this is
labeled "idiopathic," a word I have come to hate, and could make a career of
in therapy if I so chose.  Most of the time, you'll hear about peripheral
neuropathy being secondary to diabetes, and their symptoms are quite similar
to mine, although it doesn't seem to be as bad for them or as pervasive as it
has been in my case.  Other causes can be alcoholism, drugs used to treat
people who have AIDS, and some others I've forgotten about.  Sometimes, pn
remises too, but if that would have been the case for me, it would have
happened a long time ago.  I just keep getting worse, but now it seems to be
the secondary issues that are taking me down.

Neuropathy is basically a blanket term for any kind of damage to the
peripheral nervous system, so this doesn't involve my brain or spinal cord.
Carpal Tunnel Syndrome is a form of neuropathy too.  As I said, it's a
blanket term.

I don't usually refer to pn directly, and that's my little bugaboo.  It's
secondary to something, and it's frustrating and pointless for someone to
remind me of it.  I guess I also got tired of explaining what pn is (not in
this case, I don't mean that I don't want to explain it to you -- this is
different).  Here, I tend not to refer to it directly since this list is
really for folks who have cp and people who are associated with folks who
have cp.

I came to this list at the behest of Trisha, whom I met on another list.  Her
daughter Amber has cp, and she asked about me pitching in with the
administrative duties of this list.  I was very happy to do so, but am not
part of the administration now.

I'm here now, because I'm part of this gang now and I love these people.  If
I were to win the lottery, there are people right on this list I'd share with
before my own relatives.  That's a fact but not a probability, since I don't
play the lottery.  The honorary cp comments are from people kind enough to
let me feel like one of the gang.  The honorary cp diagnosis has meant a
great deal to me because I know the intent that lies underneath.

The secondary joint problems that cpers here talk about?  Those are my
problems too, and they have become big as of late.  Those are about the only
symptoms we have in common, but the friendships I've developed here have
nothing to do with anything but hitting it off with various people I'm now
close with, in the same way that common elements cause friendships to develop
generally.

That's about the long and short of it.  I just now feel more at home here
than anywhere else.

I hope this clears up the confusion Emma.  I don't wonder that you couldn't
figure out what in the heck was going on with me.

Betty

In a message dated 4/6/2002 3:10:54 AM Eastern Standard Time,
[log in to unmask] writes:


> Hi Betty, how're you going?
> I've been meaning to ask you this for a while, I hope you don't mind....
> Did
> you "acquire" CP??  It's just that I always thought it was something we
> were
> born with.  And yet you talk about "since becoming disabled".  And then a
> few
> weeks ago somebody referred to you as "honorary CP", and now I'm just plain
> confused. :(  Is CP something  you can acquire due to accident or injury?
>
>
> Hope you're well.
> emma
>