Well said. ----- Original Message ----- From: "Jeff Bayard" <[log in to unmask]> To: <[log in to unmask]> Sent: Friday, August 01, 2003 8:09 PM Subject: My two cents Re: In Search of a Cure > 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 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn