What does Awareness mean to you?
 

Usually, when we see "Fill in the Blank Awareness Month"; we automatically think it is about raising awareness among the larger population. I usually think of special commemorative postage stamps, tulip tee shirts, and letters to our editors- for those of us who still have the quaint luxury of an actual local newspaper. I had hoped for more from our PD organizations; the PDF at least offers a comprehensive toolkit to download. It is only day two of our special month, but really I expected to see or hear something somewhere by now.

Ah, here's a tasty morsel. A quick search on Google reveals that Senator Spratt of S. Caroling has PD. He downplays his diagnosis as "really there wasn't anything to be alarmed about" and he asserts that he doesn't "intend to change his schedule or work habits" and a local neurologist confirms this with the carefully chosen qualifier "he should be able to maintain his current pace." Wow. "I'll have what he's having" if I may borrow a line from Meg Ryan. Perhaps, the Senator has a new Super Human subtype that we have yet to hear about? Poor guy is both in denial and scrambling like hell to make people think that PD is no big deal. Maybe for him right now the PD is very unobrtusive, and hopefully it remains that way for some time, but this guy doesn't know for sure, does he? It strikes me that he is denying what could be his future reality for a short term gain of carrying out his term. Given what I've learned of PD, I'd either quit and start pedaling my buns off, or use the position as a platform to make some changes for all people who have PD. I suspect he'll do neither.

Spratt, like many other famous folk with PD, leave us normal folk at a bit of a disadvantage. We need moms on the Internet who wonder whether they will be able to transport her kid and his friends around on a Saturday, or will she be shunned by other mamas who won't let her drive. Yep, this happens. We need people who do make a modest living who face enduring a series of mental measurements to assure his employer that he is not in the least demented. Tell me, if PD is no big deal; why can I not now, post diagnosis, find an affordable life insurance policy? Surely Aetna knows that at least PD doesn't kill you. Without in home assistance or a nursing home, who is going to pay someone to turn me over in bed? Maybe I can find that on eBay? These are the things that the NPF omit from their Parkinson Success Stories; the idealized stories of people who work for a few more years at top salary, then seamlessly flow into early retirement and SSDI-they are oh so grateful to now have endless leisure time to pursue carving driftwood or nature photography. At least the 'people' (if indeed these are real people) on the NPF site acknowledge that they slow down.

All of this just reinforces what I have come to know. Some of us do hide a little in denial which may be the most neuroprotective self-treatment around and in doing so we perpetuate many of the myths and mis-perceptions that form our image among our peers. I have wondered before why we do not have a more vocal active group much like Act Up has for AIDS. I so very much appreciate how we exchange ideas and information here, but in some cases we are as they say "preaching to choir". Well, folks, I'm ready to start singing elsewhere, along with, our long lost Rose, our NIH Ethicist Liaison and Poetess at Large. We have been exchanging ideas on what it takes to form an Activist - Awareness group using performance art as a medium. We have some lofty ideas and goals so not sure we can pull it off but would love to hear from anyone interested or who may have some experience or constructive criticism to offer. Really, forty years is entirely way too long to go without any new treatments or prognoses, diagnoses, we've received nothing but hyperbole, really. How many times can one read of potential new treatments when forty years have drifted by- at this point, something like that sounds like wild speculation. I was struck by a lawyer I met the other day who asked me "what is your prognosis?" and for a fleeting moment I thought "How can I say when I'm not entirely sure of my diagnosis?" We need to start changing things for us now, I don't want to wake up ten years from now and still only have Sinemet or no definitive answers for anything.

To me, awareness means informing the PWP community to spread awareness beyond and hopefully see some change. I know all this seems insurmountable as we are taking on a system that exists to benefit itself, not to make people well. How and where to even begin? If you want to write some words of encouragement, advice, or simply tell me this is crazy, or that I am crazy, well that's fine too.

Reverse bake sell
 

We have a problem in some companies whereby, as you mentioned, Conductor, Parkies get fired from their jobs or at least get tested endlessly;' they are not judged on their ability to do the job, they are judged on some childish and dubious neuro tests.
Some PWP are working to have witnesses when that day comes. Genevieve baked cakes and took them to all her neighbours; told them she has PD but did not dwell on it. Now the neighbours say hello; she has a better chance of survival as her condition worsens. She has revealed herself to people around her, starting by her helping them.
JimmyBear went into town and raised money.... for cancer.
A few got together and went to a town hall meeting, just to discuss what everybody else was discussing. With walkers, slurred speech, trembling hands. Talking about the budget for repairs to the old library. Everybody could see the symptoms, but that's not what the PWP talked about.
So there are witnesses in the local community who know that we have PD and also they witness to what extend we are still functional.
We had a guy, Eric, fired from his job at the first diagnosis, when nobody could even detect the symptoms - Eric was doing his job perfectly. Well, amazing event - people in town helped Eric get another job, and fired off nasty letters to the boss who had fired the PWP. They had all seen Eric around and figured he was competent and got a raw deal. PWP worked together to get Eric's story out and into the town, but it was average everyday citizens who stepped in to help out. (In the '60's we called that "co-opting the straights".)

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.

Exactly what we have in mind...
 

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 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

creativity collection
 

laura, rose, and all,

sounds perfect!
paula

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

Not so
 

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.