I call it the Tin Man effect :) Fear not, Toto! Mommy's coming!!! Kathy Salkin wrote: > 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.