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Hi Marco: Who's leaving the list? Anyways, I like the points made here. I have a question. Forgive my ignorance, as Dad died from complications brought on by Parkinsons, as some of you folks know. My Dad, a physician, called it a "disease", and I witnessed his rapid decline, and it appeared to me as a "disease". You folks please be tolerant of my question, as I begin to learn more. I have his medical records, and although I am not a physician, it appears he was taken from neurological failures brought on by Parkinsons. Although in the strictest of definitions, Parkinsons has no "pathogen", his vital functions were afflicted, especially his mind, he had symptoms and he was basically thrown into chaos, and he knew at first what was happening, but as he continued in degrees into that chaos, God it was tough for me to watch, and Mom, God bless her, she is lonely. I am committed to helping the cause for finding the cure, absolutely. Anyways, help me with this one. How do you define disease, and how is Parkinsons defined? You also make good points about how we US folks think inside the box,the Box being the USA. I, too, read about "stem cell this" and "stem cell that", and it does appear to be an obsession, but then again, I understand why and when politics are involved, it can get into some nasty arguments where folks say what they should not say---you get heated up for your side. Like myself, I dont believe abortion is moral. Thats my belief, but I am not going into a heated debate about it. And if anyone on this list tries to do that with me, I will simply not respond on the list to it, as it is too divisive. I believe folks can hold differing views and still be good friends, and that should be the goal for folks that share this list. I have a couple of good friends that are gay, but I dont get into arguments with them to espouse my views upon them. Same as the stem cell, or the war in Iraq, taxes, trial lawyers, etc. I can see the hot debates about infant stem cells vs adult stem cells, but I also see all the other ongoing research studies, like http://www.parkinsonalliance.net/research/grants2002.html Yes, there is plenty to argue about, but there is also plenty to sing about too. I would rather hear the songs here, and if you got a disagreement with the law, then change it through legislation, and make folks of like minds aware, so they can help. Whats ACTIVA? How long has ACTIVA been around? And Murray, I dont see how he keeps up with it all, but I am sure glad he does what he does. Well, thats my two cents, just dont make my two cents into a Fort Knox of an issue just because I am asking why Parkinsons is not a disease, when in todays politically correct climate, everyone is calling every malady a "disease", like the fat people suing McDonalds for giving them the "obese disease", or alcoholics calling alcoholism a "disease". You can look it up in the dictionary, and it probably reads like the common cold is a disease. Jeff Bayard Help Fund the Cure! http://dialforacure.com ----- Original Message ----- From: "Marco De Michiel" <[log in to unmask]> To: <[log in to unmask]> Sent: Thursday, July 31, 2003 11:43 AM Subject: Re: In Search of a Cure > Linda, > > It seems to me that unless one is American and part of the 'inner circle' > one's postings are never acknowledged. Here's the text of a message to Greg > Wasson but sent to the PARKINSN@LISTSERV..... address. > > No one replied! > > The 'mutual admiration society' that exists in PIEN makes me want to throw > up. > > This time I'm leaving the group for good. > > Marco > > ====== > Text of message sent 07/23/2003 in reply t one from Greg. > ======================================== > > 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. > > **************************************************** > (07/31/03. Note. added comment " Isn't this an objective plan"?) > **************************************************** > > 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! SiteBuilder - Free, easy-to-use web site design software > > ----- Original Message ----- > From: "Linda J Herman" <[log in to unmask]> > To: <[log in to unmask]> > Sent: Thursday, July 31, 2003 11:50 AM > Subject: In Search of a Cure > > > > Dear listmembers, > > > > Please see http://grassrootsconnection.com/klatham.htm > > for an amazing article, also by Peggy Willocks, about the power of the > > Internet and the power of the Parkinson's community in the "Search for a > > Cure" > > > > Linda > > > > ---------------------------------------------------------------------- > > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > > In the body of the message put: signoff parkinsn > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn