that is cpas, sorry i can't keyboard good because i have CPAS. -----Original Message----- From: Barber, Kenneth L. [mailto:[log in to unmask]] Sent: Monday, July 01, 2002 11:26 AM To: [log in to unmask] Subject: Re: What Do We Call This? coas would be my choice, if we r voting. -----Original Message----- From: Cleveland, Kyle E. [mailto:[log in to unmask]] Sent: Monday, July 01, 2002 11:04 AM To: [log in to unmask] Subject: Re: What Do We Call This? "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.