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C-PALSY  July 2002

C-PALSY July 2002

Subject:

Re: response to Pam's concerns about the new "Post-CP Syndrome" w eb p age

From:

"Barber, Kenneth L." <[log in to unmask]>

Reply-To:

St. John's University Cerebral Palsy List

Date:

Mon, 1 Jul 2002 09:37:07 -0400

Content-Type:

text/plain

Parts/Attachments:

Parts/Attachments

text/plain (142 lines)

kyle i think bonnie moulton wrote and got published a article on aging with
cp about 18 months ago. is she still on list? she can contribute some
research now,

-----Original Message-----
From: Cleveland, Kyle E. [mailto:[log in to unmask]]
Sent: Monday, July 01, 2002 9:10 AM
To: [log in to unmask]
Subject: response to Pam's concerns about the new "Post-CP Syndrome" web
p age


Pam,

I tossed and turned quite a bit last night, thinking about my response to
your post and the vision I have for this webpage.  I suppose the easiest
thing is to define what it will and will NOT be:

It WILL be a reference FOR medical professionals.  No, we are not medical
professionals for the greater part.  However, the medical community at large
does not recognize "Post-CP Syndrome".  Part of the site's reason for being
would be to give doctors, PTs, OTs, etc. insight into what we (specifically
individuals who have CP) are facing as we age.  The conventional medical
community has officially acknowledged the existance of several "post" event
syndromes (i.e, post-polio).  For CP, this is not the case.  As many here
will atest, we as patients know FAR more about CP than the average general
practitioner, and FAR more about what happens when WE age than most
specialists (physiatrists, for example).

Picture this:  You start experiencing pain and spasticity in areas and
severity unknown to you before now.  You have an appointment to meet with
your doctor.  You tell her that you feel that the delta in spasticity is due
to an "accelerated aging process".  She responds that she's never heard of
such a thing.  She knows that the cerebral lesions are static, so how can
you be getting "worse"?  Everyone knows CP doesn't get worse.  No, you
reply, but the secondary symptoms do.  You direct her to this website as
evidence.  Anecdotal at first, maybe, but as it develops and matures we will
be able to provide the stats to back up the claim.

It WILL NOT be a treatment guide.  There might be links to news stories
about novel treatment options, but there will be no blanket "This is what
you need to do" statements regarding any form of treatment.  We want to
disseminate information, not opinion.  Let me flesh this out:  On one cancer
web site there is a fellow who adamantly prescribes coffee enemas for every
ailment coming down the pike (are they called "Crappuccinos"?  Sorry,
couldn't resist.).  There will be no place for "fringe" medicine.  While I
am not opposed to including links to viable alternative medicine, there
won't be any room for "new age" medicine.  What the majority of health-care
plans would cover are the kinds of links we would include.

It WILL NOT be a forum.  We have a perfectly good community for discussion
right here.  That's not to say there won't be narratives of folks'
experiences, quite the contrary.  We need to know what sort of issues people
are facing as they age.  Isn't that the root issue anyway?  So, yes, there
will be a "biographical" section.  However, the scope of our stories will be
limited to the challenges faced as we age, including (but not limited to)
the areas I brought up earlier (work, family, relationships, health, etc.).

Will there be some EMPHASIS on the ambulatory CPer?  Well, yes.  As a group
we were told that if were were walking when we were 20, we'd be walking when
we were 40.  Many of our parents were told that we would not have much
functionality at all when we were first dx'd.  When it became apparent that
we would be "high function", then the reverse was touted:  the condition is
static, so being aggressively athletic could only help improve function.
That might have been true for a period of time, but now we are paying the
price for "pushing the envelope".  No pain/No gain turned out to be a cruel
joke for many of us.

Will the CPer who was/is "more involved" be DE-emphasized?  No!  Here's the
deal:  If you are dealing with issues related to CP and Aging, then this
will be "information central".  Level of involvement is far less important
than the aging factor.

So, let me re-iterate some of the points from this and other notes:

-       This will be a site devoted to issues related to CP and Aging.
-       There will be no forum or discussion board.  C-PALSY does this quite
well; there is no need for another forum.
        Issues, data and articles from the web site could be discussed here,
but the site itself will have no vehicle
        for feedback.
-       Kat and I will be co-administrators of the site.  We will always be
open to suggestions, but we'll have final
        say on content.  We also reserve the right to edit submissions for
grammar/spelling, clarity and relevance of
        content.  We will most definitely be soliciting info from the
C-PALSY family.
-       This will be a vehicle for dissemination of information regarding CP
and Aging, and all of the "baggage" that comes
        with the issue: employment, relationships, health issues, emotional
issues, advocacy, public programs, etc.
-       We are not health professionals and will not "advertise" any
treatment ideas.  This is not to say that we will not
        invite healthcare professionals to contribute---I could see Beth T.,
for example, being a treasure-trove of useful
        information if she'd be so inclined.
-       Links or articles regarding treatment must be within the realm of
commonly accepted practices of conventional or
        alternative medicine.  Anecdotal stories of unconventional
methodologies will not be used.
-       Articles related to "CP and Aging" are solicited.  (Pam, could we
get a link to your "New Mobility" stuff?)

I just want to clarify again why the focus should be so narrow.  Aging with
Cerebral Palsy is something each and every one of us on this forum is
facing--whether it be ourselves, our kids or our clients.  "Post-CP
Syndrome" is not recognized by the professional medical community, unlike
many other "post syndromes" of conditions previously thought to be static.
If the focus of the site is even slightly diverted from "Post-CP syndrome"
and its attendant problems, then the relevance and impact of the site will
be diminished.  It is my fervent hope that this web site will be a source of
information and enlightenment to all CPers, their families and the
professional medical community.  The idea that an adult with CP somehow has
less social and medical "value" than a child with CP is morally repugnant
and cannot stand.  As adults, we deserve to be heard by the medical
establishment that "Post-CP Syndrome" is real and will become an acute
medical emergency if not addressed as the CP community ages.   For the kids
with CP, we owe them the opportunity to have continued medical and emotional
support into adulthood.  Cerebral Palsy does not magically disappear at age
21.

Pam, I hope this clears up any confusion I might have caused you regarding
my ideas for thios web site.

Thanks.

-Kyle


-----Original Message-----
From: Pam Dahl [mailto:[log in to unmask]]
Sent: Sunday, June 30, 2002 9:46 PM
To: [log in to unmask]
Subject: Re: New web site idea--back to my original point


Kyle and all,

The issues you raise apply to many of us who have more "severe" cp. (I don't
like "severe", I'll say "more involved".)
<snip>

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