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Greg, I think we need to face reality that in todays world the marketing of 'the body beautiful' and all that it embraces is the way of life; just turn on your TV or look at a magazine. The truth is society hides away the sick, infirm and aged; and dare I say it ugly. Therefore, it would serve no purpose to use some PwPer's in a Propoganda campaign. The word 'propoganda' is often associated with presenting distorted facts, lies even, to achieve an objective; in effect it's a negative word. Another reality is that there is much 'self-interest', greed, bribery and corruption in todays world therefore, finding support for any PD initiative is not going to be easy because of the, "what's in it for me" mentality at an individual and organisational(industry, medical or government) level. The message is simple, "it could happen to them, or any one of their family" Different? Are we? who says so? We do! They, the norm, don't, many are indifferent and don't even have time to notice. So why bother emphasising the physical changes as long as we have the same rights as other disabled groups. As far as I'm concerned I've the same heart, soul and mind and intellect that I had before PD and all the time in the world to myself to do as I wish! 7 x 24 all mine more precious than money or material things. Time to give to others. Let me take this opportunity and try to express what I think we (PwPer's) should be doing globally to help ourselves and others in the future. Let me be frank this is a 'battle' plan to identify the causes of the illness and stop it's progression; to advance new therapies; to expose the Pharmaceutical industry; to expose the shortcomings of Neurologists and Psychiatrists, for starters. . A campaign to bring together all the PwP groups in the World using the Internet - a single voice, no duplication of effort, quicker implementation of ideas . Establishing a PwP organisation independent of any vested interests - even Doctor's get PD . Establish a fund by asking each PwP to make an annual subscription of say $50 - If you do the math it's potentially huge . Establish a list of key Professionals who are not in it for the qudos . A campaign to change the 'mind set' . Establishing a database - of case histories . Updating diagnostic procedures - to collect additional data . A review of Medications and dosage - to avoid the slippery slope . Changing the name - it's not a disease . Establishing an 'effective' voice - action as well as words . A model for other Neurological disorder groups A polite observation, when will you and many others in PIEN, acknowledge that there's a World beyond the east&west coasts of the USA. That there are other members around the World who have good idea's and strong views but fail to voice them because of the domination of US members and their almost total pre-occupation with Stem-cell R&D. With regards, Marco ----- Original Message ----- From: "Greg Wasson" <[log in to unmask]> To: <[log in to unmask]> Sent: Tuesday, July 22, 2003 9:41 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! 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