Maybe I'm coming from way out left field here, but the term, "Post Cerebral
Palsy Syndrome" bothers me, as I like accurate labels. Bear with me, please.

Polio is very different from CP.  Polio is a virus, and if it doesn't kill you
(which it can) you recover from the illness.  The muscle atrophy arising from
Polio is an effect from the attack of the virus to the brain, not the virus
itself.  Once you've recovered from polio, that's it, you're post-polio.

CP, on the other hand is a condition arising from injury to the brain, whether
it happened during birth or afterwards.  It's not an illness you recover from;
there are no vaccinations against CP because it's not a pathogen.  Therefore
in my opinion, one cannot be post-CP as it's always there.

So I propose calling this condition we CP'rs face as we age, "CP Aging
Syndrome."  If I'm in the minority here, I'll be glad to concede to the
majority.

Kat


On Mon, 1 Jul 2002 10:03:10 -0400 "Cleveland, Kyle E."
<[log in to unmask]> wrote:

Exactly, Ken.  Change happens at the grassroots level (even though that
phrase is tired, it's true).  It never ceases to amaze me that most MDs know
so little about CP--for most, only what they retained from med school
lectures.  For the folks who have a working knowledge of CP, they tend to
have pediatric specialties.  As far as the pediatrician is concerned, the
"static" statement is true--they don't see any degeneration in their patient
population because they've outgrown pediatrics before symptoms present.

-----Original Message-----
From: Barber, Kenneth L. [mailto:[log in to unmask]]
Sent: Monday, July 01, 2002 9:55 AM
To: [log in to unmask]
Subject: Re: New web site idea--back to my original point


well since i did not know better i married and started a family. my youngest
son is 15 and now i am looking at "how the hell am i going to keep going
until he is out of school?" i believed that "it wont get worse crapola that
dr. feed us. these docs need to have their butts kicked. i went to see a
pediactric ortho. i wish he'd have believed that my problem was aging with
cp. instead he thinks it has to be a neck injury because "that is all that
could explain the global pain i have" (referral to spine center, another
round of referrals for every body. i could just throw up.} oh yes, there is
a neck injury you fool doctor, but there is also many other injuries too. i
wish i'd had this website to give him. and once it is up and going i'll
still get it to him. i have his email address,  they still spout this wont
be any worse stuff.