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, Deri,
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 young
kids and adolescents.  There's a lot of guilt associated with not being able
to do a lot of the normal "parent" stuff.  Platitudes like, "Your kids will
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 or
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 by
this site.  The more general in scope, the less impact for specific issues.

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 your
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, etc.),
but therapies will need to be supported by more than just anecdotal
evidence).

It WOULD include information on ADA (go, Kat, go!), tips on application for
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.

-Kyle
-----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
AB's
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

Bobby