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.