Re: I'm waiting

[Guest guest]

In a message dated 6/30/2004 7:21:47 PM Pacific Standard Time,

frogrove@... writes:

OK. Just what did they do to you guys when they got you in the Lab at North

Western? I'm waiting and waiting, almost patiently, to hear all about

Chicago and every thing you did, and learned. Who you met, what you ate, where

you slept, how you felt, how you feel now. Come on. Somebody talk. I'm dying

in here. Inquiring minds want to know.

Ronnie

Ronnie and other Inquiring Minds,

Thurza is going to do an overview in the next Synapse. But so you won't

die....we ate real well--the best banquet food I've ever had--, slept

okay--great room, huge bed but it had a pillowtop and I don't sleep as well in a

soft

bed. Several new PLSers attended but those that you know who were there was

(and hope I don't forget anyone) well, us of course: & Jim /Thurza & Jim

/ & Don / & Craig--the organizers. Jane McCord, Carol, Ellie

(Jane's sister), Mark, Jim & Barb Spencer, Sue Ellen Ledford & Charlie, Edith

& Kravitz, Moen & Marilouise (her sister), Pat & Sam

Reuschlein, Kris Brocchini and daughter (who you haven't meant

yet--they live

in my area but they did go to TW last year), Mata & Arthur son, other

new names -- Ted & Barton, Virginia & Bern Sweeney, Ennio & Rossi,

Peg & Nils Pearson, Regina & Potts, & , Harriet &

Gene Seeberger and daughter Sandy Nash....and there were about 23 or so

patients and staff form the Les ALS Foundation...so Saturday was a great

turnout. You know we always have a good time on Friday night at our social

gathering but unlike you, we were quite reserved (you'd call us boring).

They talked about spinal taps (we knew beforehand) but only one had

volunteered so they decided not to do just one and the rest of us opted to do it

at

home and have our spinal fluid sent to NW once they get all the paperwork.

This seems to be the latest and greatest in research now is analyzing our

spinal fluid. NW just got an expensive machine that analyzes whatever it is

they

are looking for SO....WE all need to jump on that bandwagon. Unlike the

blood, they don't have to wait so this seems to be our latest hope, and it will

play a major role in the PLS Registry. We who had already sent our blood

didn't do it again but the ones who hadn't did, we filled out more paper work,

did breathing tests and looked at the labs...unfortunately the mouse models

are in a separate building (not for look-sees) so we didn't get to see them

only on the presentation slides. Thurza, as usual, will do a good job writing

the technical stuff. But what is the main, major, super important...is we all

arrange to send our spinal fluid. They can't help us if we don't help them.

Alone we can do so little. Together we can do so much.

Helen Keller (1880-1968)