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C-PALSY  July 2002

C-PALSY July 2002

Subject:

Re: New web site idea--back to my original point

From:

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

Reply-To:

St. John's University Cerebral Palsy List

Date:

Mon, 1 Jul 2002 07:05:38 -0400

Content-Type:

text/plain

Parts/Attachments:

Parts/Attachments

text/plain (98 lines)

if we were tofind competant medical pros to contribute, then good, if not
that is okay too.


 We are
not medical professionals.

Kat


----- Original Message -----
From: "Cleveland, Kyle E." <[log in to unmask]>
Newsgroups: bit.listserv.c-palsy
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,
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

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