"CP Aging Syndrome" it is (sound of gavel).  So, is the acronym CAS or CPAS?
This is fun!

-Kyle the Curmudgeon

-----Original Message-----
From: Kathy Salkin [mailto:[log in to unmask]]
Sent: Monday, July 01, 2002 10:59 AM
To: [log in to unmask]
Subject: Re: What Do We Call This?


Trish,

You're right about aging being a natural process.  However what we are going
through isn't natural, mainly due to the fact that we have CP.  Thus, I
would
think "syndrome" is a far better term than "process."  "Process" seems to me
to denote a linear progression from A to B to C.  What we go through doesn't
seem to be so straightforward, in my opinion.

Kat

On Mon, 1 Jul 2002 10:43:17 -0400 Trisha Cummings <[log in to unmask]> wrote:

Hi Kat,

   Why not name it The CP Aging Process - everyone ages ( so that kinda
negates the syndrome idea), however from my observations the stress placed
on a CP body accelerates the process because of the mounting damage the
stress places on the joints and muscles, etc. And you are correct about the
post - one never gets over CP so one can never be Post CP.

                                           Brightest Blessings - Trisha


> 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.