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
> > >
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> >
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> >
>
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