[jeanb]

While I am NOT thankful to have Parkinson's disease , I AM thankful to have access to good healthcare and have a loving supportive family.

I am thankful that there is terrific research going on. I am not thankful that so few pwp participate in clinical trials and that the process takes so long

I am thankful for the PD orgs that work so hard on my behalf, BUT I am not thankful for their duplication of efforts

My new years wish is that the orgs would work together and divide up the duties based on the strengths of the individual orgs: (original idea from Carey C as best I can remember in general) e.g. PAN continues in its same role with ALL other major orgs supporting them financially; all research money to FOX; NPF takes on the responsibility of setting up community health centers across the US; PDF provides training and information; APDA continues to support its state wide coordinators and offices. The consequences would be less scarce resources wasted on duplicated services and administrative staff, with more money targeted intelligently for research, and better general services provided for PWP.

Happy thanksgiving to all

Jean B

[indigogo]

Jean - I support this vision - I think a lot of us do. There's enough work to keep everyone working in the PD org world - in a more streamlined, coherent, productive way.

[jeanb]

Originally Posted by indigogo

Jean - I support this vision - I think a lot of us do. There's enough work to keep everyone working in the PD org world - in a more streamlined, coherent, productive way.

Carey, you are right,of course. But it bears repeating.

Jean B

[pegleg]

Jean
Good visionary thinking. I especially would like to see less administrative costs through consolidation, not just collaboration. I find it difficult for even PWP's to know into which pot they should drop their donations.

I don't have a clue how to begin getting this message out. I have some thoughts and ideas, but cannot take on the responsibility of leading such an effort.

Does anyone have a plan? You see, I am thinking there is a sense of urgency if some of us are going to be around to reap benefit from such a massive consolidation.

Should we initiate such change at the grassroots level, or go calling on the powers to be? I seriously thing we need to "git 'er done!" as Larry, the Cable Guy (comedian) says.
(If you are not familiar with this slapstick, corny but hilarious comedian, see him here http://www.imdb.com/media/rm533697024/tt0462395 )

Peg

[tulip girl]

I am with you all on this one - it is one of my soapbox stands. There are so many PD groups out there - Pedaling for Parkinsons, Davis Phinney Foundation, BikeLaynes, etc all doing their "thing" - such a waste of money and resources.
TG

[jeanb]

Originally Posted by pegleg

Jean
Good visionary thinking. I especially would like to see less administrative costs through consolidation, not just collaboration. I find it difficult for even PWP's to know into which pot they should drop their donations.

I don't have a clue how to begin getting this message out. I have some thoughts and ideas, but cannot take on the responsibility of leading such an effort.

Does anyone have a plan? You see, I am thinking there is a sense of urgency if some of us are going to be around to reap benefit from such a massive consolidation.

Should we initiate such change at the grassroots level, or go calling on the powers to be? I seriously thing we need to "git 'er done!" as Larry, the Cable Guy (comedian) says.
(If you are not familiar with this slapstick, corny but hilarious comedian, see him here http://www.imdb.com/media/rm533697024/tt0462395 )

Peg

I agree with you completely, Peg. Consolidation, change of roles, and decreased administrative costs. I don't see how pwp can help bring this about. But talking about it can't hurt...

Jean

[Conductor71]

Originally Posted by tulip girl

I am with you all on this one - it is one of my soapbox stands. There are so many PD groups out there - Pedaling for Parkinsons, Davis Phinney Foundation, BikeLaynes, etc all doing their "thing" - such a waste of money and resources.
TG

.
I noted that very early on, especially when you get to web site of the various orgs and its all the same information all slicked up to make you feel not so bad from your recent kick in the gut diagnosis. I especially like the PDF site where someone actually wrote that a diagnosis of PD is one of "adaptation not devastation". Well, what happens when you are weary of adapting? They don't even let us grieve the loss of our health; we just have to pull ourselves up by our boot straps and suck it up. Survival of the Unfittest.

It strikes me that we need a radical change in how we view health. Why was it ever treated like a commodity in the first place? Surely, we had other countries to model after when it came to developing health care. Funny, if I were to interpret our country's founding words "We hold these truths to be self-evident....the right to life, liberty, and the pursuit of happiness", I would consider health to then be an unalienable right, not something to be bought and sold on a market exchange. Then again, I am far from being a Constitutional scholar, but I do wonder sometimes if health was considered as one of those fundamental rights?

The FDA could also use a little radical change as could the American Academy of Neurology. I think we start wherever we can, so grass roots will lead the way. Maybe we should start planning some live, videotaped "Freeze- Ins" outside the FDA in DC. Or, we could start following the head of the AAN to interview him as to why they even have a clinical diagnosis of PD when experts can't even agree on what it is (now there is debate as to Lewey Bodies as conclusive sign of PD). I am thinking this would be Michael Moore style. Any other ideas for causing a scene and getting people talking on Twitter, CNN, YouTube, Facebook, etc. Seriously, if we want to see change we need to start thinking very creatively on how we can border on civil disobedience and still get our message across.

Laura

[jeanb]

Originally Posted by Conductor71

.
Seriously, if we want to see change we need to start thinking very creatively on how we can border on civil disobedience and still get our message across.

Laura

I agree. I think it's more than time to make noise. Jean

[pegleg]

OOOOOOOooooo! I like that fiesty side of you!

quoting youo : some live, videotaped "Freeze- Ins"

Now that's an idea! More, more!
Peg

In spite of our situation, I hope everyone has a Happy Turkey Day!

[Jaye]

Seems like the last time I went to a live PAN forum in Washington, DC, there was much discussion of this area of inquiry. Representatives of the various orgs were invited to sit in a panel together and tolerate questions from the audience of well-worn and knowledgeable advocates. A wise soul from the wave of activists before us rose and asked the head of APDA why the promises of a similar panel a few years ago had not been carried out. Anyone recall the answer? I don't, but it was a good question. About that time, NPF and PDF came very close to union--even the stationery had been changed, I heard--but the deal collapsed at the last minute over (I heard) fiefdoms and corner offices, titles and power.

For that matter, speaker after speaker, year after year, calls for consolidation and receives roomfuls of applause. My mailbox is crammed with expensive four-color "newsletters" that contain pictures of the donors (whose motives are laudable) attending gala balls and sitting next to lovely floral arrangements.

One year, at one of those formal fundraiser dinners, the people with PD were asked to stand, then we were asked to applaud our benefactors, that is, the people who paid so much to come to the event. Sitting at a table with no flowers at all, on the periphery of the room where the service was surly and slow, I nearly went ballistic--but of course I only cried later--because I had paid $500 of my own hard-earned money for the tickets for my spouse and myself. There was talk of apology to the PWPs for that gaffe, but none that I was aware of ever made its way out of the halls of power.

MJFF, on the other hand, is changing the face of medical research, showing an arcane system of peer review how to bring ideas and knowledge into the light of day, while mere croneyism is a non-factor in the awarding of grants. They are doing something really new, which makes me very much want to trust them. Their conversion from avoiding patient input to a serious listening resource for patient wisdom is more than commendable (thanks, Debby) and points to a more balanced future in research.

What to do? Talk to local support groups. Make this need real to them. Someone publish the orgs' ingathering and distribution figures. Why not? Oh yeah, years ago I was told this would make donors turn to other, less volatile, charities.

What else to do? Talk to doctors in the examining room. Oh yeah, and maybe get labeled a troublemaker??? No, but teach people how to get what they're paying for from their doctors and their charities.

The old system mostly goes on, and fear keeps it in place. Am I wrong? Oh, how I hope I am wrong. The inroads that have been made should be clearly reported and explained to people in local support groups, who may not want the experience. We need to walk a thin line between retaining people in groups and bludgeoning them with one more burden.

But I wander. I know I shouldn't post at 4:38 am, but here goes. Thanks for reading and happy Thanksgiving.

Jaye