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
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