Sorry you tossed and turned. Thanks, though, for your thoughtful response.
It all sounds good to me.
> 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
> does not recognize "Post-CP Syndrome". Part of the site's reason for
> would be to give doctors, PTs, OTs, etc. insight into what we
> individuals who have CP) are facing as we age. The conventional medical
> community has officially acknowledged the existance of several "post"
> 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
> 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
> 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
> web site there is a fellow who adamantly prescribes coffee enemas for
> 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
> 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
> 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
> limited to the challenges faced as we age, including (but not limited to)
> the areas I brought up earlier (work, family, relationships, health,
> Will there be some EMPHASIS on the ambulatory CPer? Well, yes. As a
> we were told that if were were walking when we were 20, we'd be walking
> 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
> we would be "high function", then the reverse was touted: the condition
> 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
> joke for many of us.
> Will the CPer who was/is "more involved" be DE-emphasized? No! Here's
> 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
> well; there is no need for another forum.
> Issues, data and articles from the web site could be discussed
> but the site itself will have no vehicle
> for feedback.
> - Kat and I will be co-administrators of the site. We will always
> 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
> and Aging, and all of the "baggage" that comes
> with the issue: employment, relationships, health issues,
> 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
> 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
> 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
> information and enlightenment to all CPers, their families and the
> professional medical community. The idea that an adult with CP somehow
> 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
> with CP, we owe them the opportunity to have continued medical and
> support into adulthood. Cerebral Palsy does not magically disappear at
> Pam, I hope this clears up any confusion I might have caused you regarding
> my ideas for thios web site.
> -----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
> like "severe", I'll say "more involved".)