Yes, but I think UCP was a lot worse when I was a kid.  That would have been
in 1958 or thereabouts when I was five.  To this day, I still feel the
humiliation of being paraded as a pathetic object to encourage people to
cough up money for CP research.  However it wasn't just UCP.  Easter Seals
did it to polio kids as well, and of course we all know about the Jerry
Lewis telethons.

Kat

----- Original Message -----
From: "J. McCarthy" <[log in to unmask]>
Newsgroups: bit.listserv.c-palsy
To: <[log in to unmask]>
Sent: Saturday, June 29, 2002 7:35 AM
Subject: Re: New web site idea


> When I was 4 years old, I was the "poster child" for
> the local UCP and played a flower in that year's
> telethon.
>
> Jen
>
>
> --- Salkin Kathleen <[log in to unmask]> wrote:
> > I get 10 meg with my ISP, so that's doable. Maybe
> > you and I can work on it
> > together.
> >
> > Ugh,  please no UCP!  I know Laura means well, but
> > I've got bad memories of
> > the telethons.  My mum actually pulled me out of one
> > when I was five because
> > she didn't like the circus they put on with the kids
> > ("See the children
> > walking..."  Nauseating.)
> >
> > Kat
> >
> > ----- Original Message -----
> > From: "Cleveland, Kyle E."
> > <[log in to unmask]>
> > Newsgroups: bit.listserv.c-palsy
> > To: <[log in to unmask]>
> > Sent: Friday, June 28, 2002 10:26 PM
> > Subject: New web site idea
> >
> >
> > > That's right, Kat!  Forgot about the
> > yahoo/cpadults.  Wouldn't folks need
> > a
> > > Yahoo logon to browse?  My ISP (through
> > Time/Warner) will give me 15 Mb.
> > I'm
> > > thinking, though, maybe we could get a .org or
> > .net URL and get someone to
> > > put it on their server gratis.  Laura suggested
> > UCP---blew coffee out my
> > > nose!  Strictly personal opine here, but I've
> > never had one good
> > experience
> > > with UCP: either as a kid or adult.  I may be
> > wrong, but I think most
> > adult
> > > CPers have the same view of UCP as many MD folks
> > have of Jerry Lewis:  The
> > > French can have them both.
> > >
> > > The doctor finally called at 7:30 PM and
> > pre-released a standing script I
> > > have for breakthru pain meds on the 1st of each
> > month.  Why couldn't he
> > have
> > > done that at 9:00 this morning?
> > >
> > > Anyway, I was envisioning something along the
> > lines of
> > > this:http://walden.mvp.net/~lackritz/
> > >
> > > "Granny Barb" Lackritz is a Chronic Lymphocytic
> > Leukemia patient (like
> > > Laura) who started her webpage because when she
> > was dx'ed with CLL there
> > was
> > > precious little web info related to this fairly
> > rare leukemia.  I
> > certainly
> > > would not want it to be "Kyle's page", but she has
> > a boatload of links,
> > > stories, etc.
> > >
> > > There's lots of stuff already on CP, especially
> > for kids, but no relevant
> > > resources specific to aging and CP.  Anecdotal
> > evidence that I've garnered
> > > pretty much says that the "system" (research,
> > associations, physicians,
> > > medical societies, etc.) loses interest in helping
> > adults.  I don't mean
> > to
> > > slight anyone here, but if you are among the
> > "walking wounded", you're
> > > pretty much left to your own devices.
> > >
> > > By "walking wounded" (phrase is growing on me) I
> > mean those of us who were
> > > ambulatory and independent during our youth and
> > early adulthood.  You all
> > > know my story: fit and athletic through my
> > mid-thirties and then Bang!
> > Ten
> > > years later I can barely get from point A to point
> > B.
> > >
> > > Lots of folks come to mind offhand:  Bobby, Kat,
> > Ken, me, Rayna, the
> > > Jennifers, etc.  That's just from "our" little
> > village.  There are a lot
> > > more besides us.
> > >
> > > Sound like an idea?  Kat, could you get back to me
> > on the Yahoo site?  I
> > > would like to make sure its easily accessible.
> > >
> > > Thanks!
> > >
> > > -Kyle
> > >
> > > -----Original Message-----
> > > From: Salkin Kathleen
> > > To: [log in to unmask]
> > > Sent: 6/28/02 5:41 PM
> > > Subject: Re: Rough go right now...
> > >
> > > Kyle, we could always use my Yahoo site, cpadults.
> >  And I've got website
> > > space via my ISP I can use.
> > >
> > > Kat
>
>
> =====
> TTYL,
> Jennifer
>
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