you r right technically, but, you are right about the sounding good too. if
it does not catch the medical communities' attention, then, it will fail.
-----Original Message-----
From: Trisha Cummings [mailto:[log in to unmask]]
Sent: Monday, July 01, 2002 11:45 AM
To: [log in to unmask]
Subject: Re: What Do We Call This?
A syndrome by definition is a group of signs and symptoms that occur
together and characterize a particular abnormality
- Down's Syndrome, Carpal Tunnel Syndrome, AIDS is a syndrome, Battered
child Syndrome, etc . I think each person with CP is going to have their own
set symptoms depending on how their CP is labeled. Atheletes aslo have
accerelated aging to the damage they do to themselves. Aging varies from
individual to individual and we still call it a natural process. What is
happening to someone with CP is not abnormal - it is normal aging for a
damaged body. If you put stress on joints they acquire arthritis before non
stressed joints -
While syndrome sounds good - and you should use it becasue you like it, you
also should understand - if its taken seriously by the medical community you
will need to have everyone exhibiting the same group of signs and symtoms -
and I am not sure that works, becasue Hemi's will have different set of
aging sympotoms than quads, or mono's or di's. Spastic will cause one one
set of symptoms tahn the other 2 types. All Down's individual has a specific
chromosomal abnormality, all AIDS individuals have the HIV virus an so on. I
think you need to codify the uniting symptom. That might be tough. Ken I
believe said he has osteophytes on his neck - I have an osteophyte on the
end of arm bone where it goes into the shoulder socket - his might be from
CP but mine is from being put thru a wall. I could see where CP might cause
a predispostion towards Carpal tunnel - and yet many non Cp'ers get this.
Cp'ers have a higher startle reflex - so do people with PTSD. CP damages
your joints and you can get arthritis sooner but this happens to for any
bone injury anyone has. To bad there is a cool sounding Latin word one could
use - that would in keeping with the medical community - after they so stuck
in the dark ages a dead language is very appropriate!! LOL
Trisha
> That's why I say go with "syndrome" and not "process," as the latter
> implies a
> natural rate of aging rather than abnormal.
>
> Kat
>
> On Mon, 1 Jul 2002 11:06:21 -0400 "Barber, Kenneth L." <[log in to unmask]>
> wrote:
>
> actually are we ever "post" cp?
> what is acurate? i am open to sugestions, but, we need something that
> these
> fool doctors can get a handle on and they sorta like syndomes as a field.
> they really need to get over this static thing they have in their minds.
>
>
> -----Original Message-----
> From: Kathy Salkin [mailto:[log in to unmask]]
> Sent: Monday, July 01, 2002 10:34 AM
> To: [log in to unmask]
> Subject: What Do We Call This?
>
>
> 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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