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.

tell ya what. i am tired of going to these "awareness conventions" in the expensive hotel conference rooms that are put on by non profit orgs which are usually headed with fully paid with benefits staff who dont even have pd. most of them have speakers (well paid) which spout a promising new treatment, speak about some study that showed some blah blah blah statistic, or talk of therapies for making life easier for us. i have seen 2 people from 2 different confernces run out of a room crying because of the barrage of "wheelchairs that are more functional, or surgeries where they drill a hole in your head, or side effects of meds or how to work the social security system or or or or.....,while the info is beneficial to some of us, lets be honest. who goes to socialize and who goes to listen to the speakers? the newly dxd go to listen. and it probably scares the bigeebees out of them.



how about WE put on a convention? wow! just think! with only us telling the docs, pharmacutical reps, caregivers, family and public in general what our lives are all about. Get us on stage and let us speak. we have questions, ideas, experiences and all kinds of input about this pd stuff because WE HAVE IT. let the masses see what it is really all about. give the audience a taste of the human side of pd. show videos of how we spend our days, let us read our words to show that we do indeed have knowledge that is highly valuable. that we have the right to decide how and where we want to live and that we need the general public know just how few programs are available to accomodate those needs. we need to get awareness out that is known by us, but swept under the carpet. the emotional and physical abuse that does happen, the underground medication given to people who have no insurance, the horrendous living conditions of so many, the lack of respite available.

we need to be heard and taken seriously when we ask about meds and their side effects and interactions with other meds. that symptoms that crop up are not imagined and that if we dont like the side effects of a med, PLEASE stop it.we need to make the public aware of some of the ocd's we suffer may actually be caused by a med and that there needs to be counselors familiar with this type of ned induced problem. we need to be loud and we need to be taken seriously. depression is too frequent and imho could be reduced alot by more awareness of not just the disease, but what it is doing PERSONALLY to us.

but, since we are not a none profit group, we only have a disease to merit others making money off of us, where would we possibly have a convention? dream on, dream on

What to we have to do in practicality to get Harley's idea from a dream to reality? I second everything she says, and what Laura (conductor) says too.
These are good cosntructive ideas, coming to light at a great time of year.

I for one would like to see some of these things happen, and Harleys thinking on this is exceptional.

This year we just about get in to the WPC, not quite at the table yet, but many of us, real advocates for our condition, no vested interests except to find a way of improving life and prospects for patients, will be there, able to meet and discuss in person, and we could just have a chance of looking objectively at what needs to be done and the steps we need to take to make this a reality. And then again, closer to home than that for many of you, is this months Unity Walk.... a good time to share ideas?


It would be good to hear people's feedback on this, I see no difference in aim between one Laura and the other, and cannot see a reason why these ideas should not be able to reach fruition!

Lindy

the problem lindy is the all mighty dollar. many of us live on the disgusting pitance given us by social security and have not enough funds to spend on the luxury of an airline ticket, not to mention hotel rooms, food, rental cars, etc. now, if one of the non profit orgs who have the money to foot the bill for everything else would dig into their huge supply of funds kept in reserve for "research" maybe we could turn the dream into reality. i nearly puked when i heard one of these orgs had reached the billion dollar mark in donations as i was looking for a place to find a caregiver that did not charge me 20 bucks an hour since i am 100 dollars over the poverty level and not qualifiable for government aid. i even called the two local orgs and recieved the info that they did not have funding available to help me. i asked just what did they do with the money and received the answer that it was used to line the pockets of the staff and their traveling around the country setting up conferences. oh yes.. and of course research. "sorry, we cannot help you." oh, i did get 300 dollars worth of taxi vouchers for a year. this supplied 3 trips by taxi to my doc and back.

but keep the ideas going. reverse bake sale is easy/

but if anybody knows a good u-tube series film-maker, a lot of mayhem can be caused for free

maybe more of these ... something to bring to a conference

http://www.youtube.com/watch?v=yiS7HiWWfts

Harley,

I asked myself this question of the orgs early on when I searched their websites in vain for any iota of information on becoming more involved in seeing change. I think the only ones that really even have the patient in mind anymore is the PDF (Pipeline is way beyond compare). This is an area I think we would need to protest in and of itself. I don't want an alliance with them at this point. I think it says more at this point to go our own way and tell others just why we are doing so.

You're insight into the stereotypcial PD patient oriented conference or convention is so spot on. The idea of starting our own advocacy oriented conference is simply brilliant! I could envision Rick heading workshops on how to take control of this as best we can beyond meds; Nan and Dr. Jay setting up forced pace cycling demos; Rose and I will have our Artivism in the midst of it all; Girija and Ron heading workshops on leading theories on PD (ours included), for starters.; alternative/complementary therapies with Fiona and Maxx...I know we have discussed here how newbie need patient mentors; we could even set that up.

So many possibilities...

As for funding, I will check with Rose on that as she has experience with non-profits. I don't really want to form yet another generic PD non-profit, so I could see our Artivist role at first to raise awareness and money just for patient advocacy in form of annual workshops. In fact, given that we have such a clear cut goal, I think it might be easier to raise funds for such an endeavor; contributors can see the reward in short order or in person our conferences. It would also be fantastic if we could see similar patient centered conferences held Canada and Europe...Bob and Lindy seem like natural people to extend this internationally.

Just think how great it would feel to have patient centered conference around the same time as the AAN holds there annual meeting; this clearly sends the message that it's not okay to ignore us. Please don't edit yourself; Harley, the money will come somehow. Keep on with the ideas!!

Laura

very kind of you to suggest i do a canadian equivalent, but Canada is politically unstable already.
if resources are small start small, go viral, and it will grow. It can be 2 people and an old table at first. Look for the multiplier effect of publicity.

whatever it takes, I am in.. and i do have a big mouth.. lol.

Isn't it time that a small percentage of the huge sums raised for PD were spent in a way that patients would like to see it spent......... even a tiny fraction of what is raised would buy what is being discussed here........... and the possibility of people focused research. Not all research has to be done in a lab...... the possibilities of combining awareness and data collection are there, it's used with all sorts of other things..............

Lindy