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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