I don't do well at the Parkinson's meetings where everybody is very polished, looking with confidence and wisdom at their Golden Years.
Awareness would include the 48 volunteers who were savaged by the Amgen experiment. Awareness would include inviting a senior person from Merck to step forward and tell us about the global shortage of a vital drug; the only treatment in the past half century, which suddenly became too hard to manufacture. Awareness would include that alternate therapies - food, vitamins, dancing, exercise - using parts of the brain that Parkinson's does not attack - rarely receive research money, or mention.
Awareness would include that, according to a study published in the Lancet, a prestigious British science magazine, 55% of medical research reports are never submitted for review or for publication (why not?) and of the 45% that are handed in for peer review as required, 31% of those falsified, substituted, modified, or completely invented the primary conclusion of the research. The "abstract" is a lie 31% of the time, not what the data said. But everyone reads only the abstract.
We are talking science fraud of staggering dimensions. I don't see why Parkinson's orgs. can't denounce that.
So, yeah, it is a vital question. This is Parkinson's Awareness month. But how much of the Parkinson's Cartel really, really wants awareness? They don't even want us to have access to the most basic information. They hide studies from each other; no way would they let us have a look. They figure they own the disease; we are paying passengers.
It would make a good sit-com; possibly in a flash-mob way; a street performance that is suddenly there and suddenly gone ten minutes later. The situation of Parkies is so absurd that it lends itself easily to humour, and people take lessons well when they are mixed with humour.
Mostly, though, think viral marketing, think YouTube, etc. And not just the usual "Here are the verbal placebos created especially for a boring video". A mixture of humour and ferocity, that would get clicked around the world. A series, not just one.

We started this whole crazy notion late night in a chat room with the idea of crashing the Sundance Film Fest....off meds. Simply to have that many beautiful, healthy people in place and then have young onset folk there--not in Stage 1 as Ms. Anne Hathaway is in the Fall release of "Love and Other Drugs". They need to see how sexy we are off meds; I would doubt she even needs them...it might be more interesting for them to point out that we are "staged" by checklist.

You are definitely seeing it as we are; skits with wit, intelligence, and pathos will be more memorable than milling around yelling with picket signs. There may be some M Python inspired moments or some audience participation
We are thinking in terms of skits; some more serious than others, all with wit, humor, and pathos. We definitely want to mix it up...the money and power are in the festival or movie premiere scenario, but we want an element of surprise; sometimes busking in the subway or popping out at the shopping mall, while other times at very prestigious events. Much of what we do hope will be metaphor for what we experience every day. We are thinking along the lines of YesMen.

Would love to hear more ideas...it would be even better if we could make this a global group. Please feel free to PM me.

Laura

The Federal Minister of Movement Disorders demonstrates funny walks,
a Pharma executive makes an Orwellian speech
a group of Parkies constantly try to find out what the heck is going on

or severe human realism done with beauty and love

laura, rose, and all,

sounds perfect!
paula

Love these. Our tagline will be ..."and now for something completely dyskinetic"

Laura et al.,
I posted a reply and deleted it as I felt it was inappropriate. I thought about your post and here is my two cents worth.
When I was diagnosed with PD, my decision was to be open about it to family, friends, coworkers and whoever asked me about my health. As a result of it, I symbolized PD to most of the people who knew me and PD became my shadow. .
When I look back, I am not sure that was a smart thing to do, if I lived in denial a lot of stress I experienced would not have happened. My family, especially my cats, didnt have to move across the globe twice! The point i am making is there may be some neuroprotection from denial, not too grounded to earth and realiity, and it might work well for some folks. When reality sucks is it wrong to live in a fantasy land> Its almost like being a child! [I] wish I could do that...

Girija

Girija
i lived in denial as long as i could
reality is a crutch
but finally hauled me in, another fish on a hook
fun while it lasted

Your post was not inappropriate - I think I was reading it when my Mac or hand malfunctioned and I posted twice.

I want to be able to thoughtfully reply but am too wiped out tonight. I will say that forming a protective denial bubble is definitely helpful for the here and now but no so good when we wake up fifteen years later and all we still have is Sinemet as the cream of the crop.