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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" web p age

From:

Pam Dahl <[log in to unmask]>

Reply-To:

St. John's University Cerebral Palsy List

Date:

Mon, 1 Jul 2002 10:45:42 -0700

Content-Type:

text/plain

Parts/Attachments:

Parts/Attachments

text/plain (170 lines)

Kyle,

Sorry you tossed and turned. Thanks, though, for your thoughtful response.
It all sounds good to me.

Pam



> 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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