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It seems to me, Greg, that the responsibility you accepted-that of patient advocate on the stem cell panel-"hangs heavy" on your mind. And well it should! While you speak, you represent the millions in absentia who aren't even aware that one day, something you have to say, at some point in time, might make an immense difference in a patient's quality of life-whether it be in stem-cell medication, methodology, economic relief or in enlightened doctor-patient relations. You are to be commended! However, when you speak of propaganda, I have to differ with you. In my mind, there's a difference between opening the eyes of the general public and MARKETING this PD and/or degenerative neuromuscular disease awareness agenda compared to PROPAGANDIZING a point of view possibly based on political party rhetoric, religious beliefs and self aggrandizement-and I don't care what one believes privately as long as I am represented fairly politically. Politicians depend on coins that fill coffers and party favors that offer position payoffs. The entire Stem cell issue is a political plum! As I sit here tapping keys, I cannot help but think it is all semantics. What you friend recommended makes sense. We did dance. We did use hammers. We did carry three grocery bags into the kitchen at a time. However, in my mind's eye, we were never unfettered. If we accepted our responsibilities here on Earth, we have been anything but unfettered, and it is this "fettering" that probably contributed to the drastic changes in our lives today! As one who now sits on the sidelines, I would like to personally thank you, Greg, for accepting the patient advocacy spot. I also hope you will keep us informed. I believe you have a wonderfully intelligent contribution to offer. In closing, I would hope that you might consider not just stories of the lives of PDers, etc., but living examples as well as a video in "A Day in the Life of........." Let your audience SEE what life is like for individuals with degenerative neuromuscular diseases. There are a number of stages to view. More than one demonstrates FETTERED. In thought and mind; in caring and friendship, E (of the headdress). ----- Original Message ----- From: "Greg Wasson" <[log in to unmask]> To: <[log in to unmask]> Sent: Tuesday, July 22, 2003 1:41 PM Subject: Timely Reminder > Late last night I was questioning the legitimacy of using patients to influence health policy decisions in Washington and in the states. I have a talk to give before a group of college undergraduates heading for careers in cell biology who are gathering to discuss, among other things, the stem cell debate. I am the patient advocate representative on the stem cell panel. I had been thinking about what I wanted to talk about and it occurred to me that perhaps my notion that our side, meaning the pro stem cell side, used propaganda every bit as much as Senator Brownback, Richard Doerflinger, and the rest of them. It seemed to me that the emotional power over legislators when confronted with one of us up close, hearing what our life is like, exceeded the value of our actual arguments in favor of stem cell research. There were scientists who could do that without having to parade symptomatic patients telling horrible stories before committee members. Somehow it seemed for a moment to be > unfair and too much of a tactic. > Later that night I happened to see to a friend from the MGH PD bulletin board online. I IM'd her and sought her opinion. She said many things, all of which were important to me, but the most important thing she said was that our participation in government policymaking, and in simply making the world around us aware of our existence, was not a matter of propaganda but a matter of truth. She said: "They need to see that once you walked unfettered along with all of them. And they should not forget for a moment that they could end up going the same route as you have traveled. Tell them how unfettered you were - remember the dancing." > Those words hit home. Of course she was right. Policymakers, and our neighbors and folks in the larger world, DO need to be reminded that "once we walked unfettered along with all of them." And from time to time we need to remember that ourselves. We block out a lot of memories of our old lives and old abillities to be able to endure our suffering with this disease. That is necessary. But every now then we need to rermember that we once lived unfettered in the world. > Thanks you my friend. > Greg > > > > --------------------------------- > Do you Yahoo!? > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > Yahoo! SiteBuilder - Free, easy-to-use web site design software ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn