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.
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