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Subject:
From:
Carla MacInnis <[log in to unmask]>
Reply To:
St. John's University Cerebral Palsy List
Date:
Thu, 4 Nov 1999 14:08:56 -0800
Content-Type:
text/plain
Parts/Attachments:
text/plain (76 lines)
Hi Bobby,
  My physiatrist and even my gp coin the term post cerebral palsy syndrome -
outlining medical issues related exclusively to the secondary effects of cerebral
palsy - particularly those with regard to aging with the condition. Guess us
folks in the boonies are right on top of things :)

Cheers!

Carla

Bobby Greer wrote:

> Steve and all,
>
>         My server is finally working now, so I can respond.
>
>         These "use of lose it posts got me to thinking. The people with polio
> coined the phrase, "Post-Polio Syndrome" to denote the destruction of
> healthy muscle fibers remaining in atrophied muscles. Polio, per se, did
> not "cause" this destruction, rather it was brought on by active over-use
> of already weakened muscles.
>
>         Maybe we should begin to speak of a Post Cerebral Palsy Syndrome in
> a like manner?
>
>         What do you guys think??
>
> Bobby
>
> >Deri,
> >
> >Seems to me one of the problems is we don't know about CP and Aging and we
> >need to find out.  We find our CP bodies go through severe and unexpected
> >"traumas."  Between 15 to 46 a number of us have symptoms, events, and
> >changes to our bodies that medical and therapeutic procedures may ease and
> >usually don't sufficiently remedy.
> >
> >When we go to doctors there's often a gap between what they know and what we
> >present them.
> >
> >Do we say Anee at 15-20, Denise at 23, Mag, Carla, names and ages escape me
> >at this hour, experience "accelerated aging?".  Kyle and I had our "onsets"
> >at 46.  He was athletic, I wasn't--though very active.
> >
> >I sense we need to restate CP to include the likelihood of further injury
> >and difficulties if only to be more watchful and aware of possibilities.  We
> >much need more and better "medicine," better informed doctors.
> >
> >I assess you're questioning whether the phenomena of CP and Aging exists or
> >exists distinct from Aging.  To me CP speeds up and aggravates wear and
> >tear, then impedes full repair and worsens matters over time.  Remedies
> >elude.   Whatever we call it, something's happening, and it isn't all in our
> >minds.
> >
> >Steve M.
> >
> >
> >From: Deri James
> >Subject: Re: Use it or loose it??
> >Date: Thu, 4 Nov 1999 04:31:02 +0100
> >
> >
> >I'm not entirely convinced by the arguments for 'Ageing with CP' being an
> >entirely separate issue than just 'Ageing'. Of course physical abuse, be it
> >inflicted from over doing sports when
> >young, incorrect dietary habits, substance abuse, or an abusive spouse, will
> >come back to haunt us as we age, just as they would anyone.
> >
> >It is hard to gauge which problems are purely CP related.
> ><snip>
> >
> >Cheers
> >
> >--
> >Deri James

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