if we were tofind competant medical pros to contribute, then good, if not
that is okay too.
not medical professionals.
----- Original Message -----
From: "Cleveland, Kyle E." <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, June 30, 2002 1:48 PM
Subject: Re: New web site idea--back to my original point
> Okay, here's where I want to head with this thing:
> First off, I don't want to get hung up on "exclusion" or "inclusion",
> wheelies, walkies or whatever.
> The issue I want to address is simply this--
> We (and our parents, in most cases) were told out of the gate that CP is
> static. Sure, the lesions don't change (even this statement may be
> suspect), but as Bobby alluded to in an earlier post, secondary symptoms
> present later on as we age. While being an information clearinghouse for
> all who are having aging issues, yes, I do want to place emphasis on a
> certain segment: individuals who were dx'd with "mild" cp and are now
> dealing with issues far greater than what they faced early on. Mags,
> Bobby, Kat, Ken, Carla and myself, to name a few, are individuals who are
> facing, or will face, the kinds of issues I would like to address.
> Specifically, issues like employer expectations. For example, when I
> started my job several years ago, I had no problems with fulfilling my job
> duties. Now, this is not the case at all.
> Family issues: Ken and I have discussed what it's like to be a dad of
> kids and adolescents. There's a lot of guilt associated with not being
> to do a lot of the normal "parent" stuff. Platitudes like, "Your kids
> love you no matter what" sound nice and give warm fuzzies, but when you
> can't drive to soccer practice because of fatigue or spasms, these can be
> demasculating for CP dads and just as demoralizing for moms.
> Relations with spouses: Sexual relationships in marriage obviously change
> with age, but "performance" issues have a different dynamic when athetoid
> spastic problems are thrown in the mix.
> These are issues only a special subset of our CP population face. I don't
> want to sound exclusionary, but not every CP problem would be best served
> this site. The more general in scope, the less impact for specific
> Bottom line: Walkie, wheelie, married, single, parent, parent-to-be,
> parrent-wannabee--if you are facing real-world problems because secondary
> symptoms (or exacerbation of primary symptoms due to age) are affecting
> quality of life, then this would be your "go-to" webpage.
> What I would really like to stay away from are things like insipid
> "inspirational stories", poetry, "voodoo" health care (doesn't necessarily
> exclude all forms of alternative medicine (chiropractic, acupuncture,
> but therapies will need to be supported by more than just anecdotal
> It WOULD include information on ADA (go, Kat, go!), tips on application
> employment disability, jobs information outside of what's provided by voc.
> rehab., info on "parenting with a disability", and most importantly: a
> venue for educating the medical community that "Post-CP Syndrome" is real
> and must be addressed.
> -----Original Message-----
> From: BG Greer, PhD
> To: [log in to unmask]
> Sent: 6/29/02 11:19 PM
> Subject: Re: New web site idea
> Let's don't get into a "walkies" vs. "wheelies" thing here. Just as many
> will becomes disabled, many walkies are headed to being wheelies.
> Whether you
> have arhtritic knees from walking or athritic shoulders from wheeling,
> we all
> have stiff joints, pain, spasms, etc