[indigogo]

Originally Posted by reverett123

At the other extreme, a national organization governed by a Board of PWP overseeing a staff of non-PWP would allow the former to set policy and the latter to do the work. Also, setting a time limit on Board membership would force a solution to the problem of each of us having our limits.

Rick - I see we came to a similar conclusion at the same time! I see it as a board comprised half of PWP and the other half org reps. I'm still unsure about how to get around establishing an org for patients, just because we don't need another org and because of the obvious limitations of the disease. I'm wondering if the patients could represent all of the many regional PD foundations and also be from the ranks of those who are already serving as volunteers for the national orgs. If the goal is to work with the PD establishment (regional and national) in a coordinated way, it makes sense to get patients together who are already involved and familiar with the frustrations as well as patients with fresh eyes and outsider perspective.

I'm wondering if we could have some sort of informal federation of patients; those already involved formally in orgs and those who take action in other ways, like posting on this board. We could have regular, quarterly online meetings or something.

[leonore]

That was a wonderful video. Very inspiring. Thanks, Jean.
You all, with this dialogue, are giving me a much-needed "on-switch" during a really rough week. best, Leonore

ps Someone please help me get my picture up with my name. I reduced the size and pixels and still..nothing!
[QUOTE=jeanb;336305]Todd, Carey, Peg, and all,

Todd - what a great video!!!

Yes this fractured PD establishment only hurts us.

It has been so hard just promoting Karen Painter's PD Tulip for awareness for Parkinson's! When I made the youtube video for the Tulip, I stepped on many organizational "toes" because some were offended that I said that Pwp didn't have their own symbol. Well did we? If we did then, I sure didn't know about it. But I hope we do now.

[Curious]

i can help you with the picture leonore. i'll pm you.

[leonore]

Carey, I think this is an amazing idea. I'd love to be part of one.

What has saddened me terribly, along with a small group of compatriots, in NY, is the absence of interest in an ongoing patient advisory board in NY City's new NYU/JCC PD Wellness Center. I want to offer, below, an example of how PWP-input gets "wasted" through short-sighted planning by otherwise good people.
My visionary but way over-extended PD doc and his colleague, both of whom I admire enormously, invited about 4 of us with PD, three of us clinical social workers, all retired and hungering for a role, and all in the arts, to serve on a committee two years ago, of neurologists and social workers pulled together to design a new PD Center with a "wellness" model. We were part of lengthy strategy meetings, involved in e-mails suggesting a name for program, etc.

The plan included a Sunday Creativity and Education quarterly series. We met at least three times at NYU Medical Center in 2006-7, incredibly productively, and then my doctor came up with the idea of partnering with the Jewish Community Center, offering classes for folks with PD at their gorgeous facility. Suddenly, the JCC Board and the NYU Medical Center Board became higher-up decision-makers, (the beginning of the end for roles for us patient activists.)
A social worker was hired to run the center. and NPF trained JCC teachers to teach yoga, TAi Chi, dance, etc. to Parkies. They honored me by asking me to facilitate a kick-off workshop in December about the PD artist and the creative process, reading my own poems, and introducing the artistic work and conversation with others from that small original planning group; including a PD photographer, and a PD choreographer, (our very own Fiona.) All very exciting. We got an incredible response to morning and afternoon sessions from so many folks with PD who attended.
Then, once Center was born, and classes begun, over the course of 7 months, they held a second, third, and fourth Sunday event, and none of the five of us were ever called in to continue our role as patient advisors on content of Sunday series, or anything else. We were praised as audience members by program directors at each event for our part in creating program, but that was it.
We all were perplexed by this, and were finally told that it was never their intention to formalize our participation in the Center as patient-advisors, nor do they intend to create such a panel, but invited us to a "Town Meeting" to offer input. Secretly, I was told that people representing those with advanced PD felt that those of us with early-onset gave too "glamorous" a face to the Center. (puhhlease!) Thus, since too many patient populations were asking to be part of the Center, including none was the obvious solution!??!!!!

We have been flabbergasted by this short-sightedness, and troubled to no end. My doctor says that it is sort of bureaucratically "owned" by the Boards of both halves of partnership, and feels terrible that we are not integral to the organization. This is, to me, a classic example of how patient input gets "disappeared" in a waste of resources. He fully agreed that they had made a bad mistake in not creating a formalized role for us, but said that it was out of his hands, and it is obvious that he no longer has much say. Bless his heart, though, in that he uses my PD poems to train his neurology students, saying what I say in my poems is far more evocative and eloquent than textbooks. The truth is that he has a long-term "dream" to have me "curate" a literary "textbook" of writings by those with PD, (how cool is that??!) beginning with a blog, to eventuallly find its way into sponsorship by his hospital.
Well, I dearly love him, but he'll never find the time, and I'd rather find my own publisher for the writings I intend to collect. It is, indeed, a superb idea.

All of this is simply my way of saying: I, too, am tired of begging to be invited to sit at the larger PD-run organizational tables. And...I'd LOVE to be part of something constructive formed by PWP's.
I just closed my private therapy practice of 24 years because of increasing "off" stretches which are unpredictable, miss my clients, who miss me back, feel really sad, and deeply crave using my creative powers for the greater good. Sorry this was so long, folks.
Leonore

Originally Posted by indigogo

Rick - I've been thinking along these lines; I think we need an independent patient advisory board; one way to start is an alliance of patients who are serving on org boards now, combined with some who aren't. That way, the orgs could be informed. I serve on the PDF patient advisory board, and feel strongly that I represent all patients that can't be there with me.

We've had very frank conversations about org fractionalization with PDF; they acknowlege it, tried to fix it a few years ago (as Peg stated above), but don't feel able to fix it now, or want to put energy into fixing it. There seems to be some collaboration in the offing about some research dollars, and the PDF does spend time thinking about whether or not they are duplicating efforts done by the other orgs when considering new initiatives.

It's a tough problem; I don't think that most of the orgs know or think of the level of patient frustration that exists.

[reverett123]

...of the dangers of seeking a place at the table when you don't own the chair. There is no reason that they should have been treated that way other than the psychology of the big organizations. A lot of wealthy donors. A lot of medical/academic egos. A lot of staffers kissing up to the above. Parkies are so inconvenient. We tend to spill the champaign.

I propose we found an organization called UPP - Uppity Parkinson's Patients and make our logo a tulip turning over a champaign bottle.



But wait! One more idea. We put together a song book of PD related lyrics "to the tune of.."

An example to the tune of White Rabbit-

"One pill makes you angry
One pill makes you fall
The ones the doctor gives you
Drive you up the wall

Don't spill the bottle
When you are at the ball.

And if you show bad habits
Like crawling down the hall
When old Mother Nature
Has given you the call
They will not know
They will not know at all

Jut how hard you struggle
When you really have to go
And the things they take for granted
Come so hard and slow
Don't ask your doctor
He just won't know

When pity and compassion
No longer are enough
And all the research they are doing
Sure seems to be the same old stuff
Remind them - They just might be next
They might be next..."

OK, OK. I'll be quiet until the meds kick in.

[leonore]

thank you for offering your help-I'd love it! but forgive my ignorance-what does "pm" mean? I'm heading out to movies..later, ok? thanks..Leonore

Originally Posted by Curious

i can help you with the picture leonore. i'll pm you.

[indigogo]

Leonore -

I can't believe your story (actually I do believe it) - things were going so well it seemed. It's even worse when you achieve something and then have it taken away. But it is so illustrative of the problem. We feel disenfranchised and powerless.

Really, there are two issues, and they seem to feed into each other:

1. the initial problem raised by Todd that the orgs don't collaborate
2. the problem of the voice of the patient being left out of decision making

The fact that there are so many different orgs/people making decisions makes it even more difficult to give voice to the patient. Everything is splintered; no cohesion, no national policy, no way to effect change that can influence the entire process.

Parkinson's patients are at a disadvantage under the current system. It doesn't work well when the orgs not only have to compete with other diseases for research money, they also have to compete with each other.

[paula_w]

There have been a few other very large needs/issues in the last intense months on this forum that have led to the surge of unity [if it only came with energy,reliability and motivation!] arising out of discouragement over - not the fact that people are trying hard to find something and just haven't gotten there yet -but rather over the attitude of superiority coming from - well - white collar crooks in the medical pharma world . They may have arrived there slowly, wthout realizing it, as "ethics" seemed to conveniently change with them.

As we try to define this thing we are creating in our minds, remember also that group living is one of the crucial needs of this community as well. Another reason to pull our energy together.

Looking at these serious concerns - there is a need for trust somewhere. I'm wondering if we should become watchdog subgroups - assigned to keep tabs on certain interests and report back, or even online. This could include numbers, stats, anything relevant to the issue. Then come together and see if any pieces fit or if helpful connections can be made.

nite,
paula

[jackiehc]

Originally Posted by paula_w

There have been a few other very large needs/issues in the last intense months on this forum that have led to the surge of unity [if it only came with energy,reliability and motivation!] arising out of discouragement over - not the fact that people are trying hard to find something and just haven't gotten there yet -but rather over the attitude of superiority coming from - well - white collar crooks in the medical pharma world . They may have arrived there slowly, wthout realizing it, as "ethics" seemed to conveniently change with them.

As we try to define this thing we are creating in our minds, remember also that group living is one of the crucial needs of this community as well. Another reason to pull our energy together.

Looking at these serious concerns - there is a need for trust somewhere. I'm wondering if we should become watchdog subgroups - assigned to keep tabs on certain interests and report back, or even online. This could include numbers, stats, anything relevant to the issue. Then come together and see if any pieces fit or if helpful connections can be made.

nite,
paula

Great ideas, Paula! One of the things I think you are suggesting is a comprehensive review of the major PD orgs, to find out who is doing what and where the overlap is (besides administration). Did I get that right? There are good things being done, but are they the right things (what we want & need) and what's missing?

I do believe we need to do that at some point, lest we risk coming across like the People's Front of Judea members asking "What have the Romans ever done for us?" in Monty Python's "Life of Brian"! (Sorry if anyone finds that reference obscure or offensive but I do think that keeping one's sense of humor is essential for LIVING with this disease.)

Jackie

[SherylJ]

Really, there are two issues, and they seem to feed into each other:

1. the initial problem raised by Todd that the orgs don't collaborate
2. the problem of the voice of the patient being left out of decision making
Carey

I agree that these issues are our greatest obstacles. Realistically, #1 is far more difficult for us to change than #2, though that is far from a "gimme" either.

Look at something as simple as choosing topics and speakers for org sponsored "patient" symposiums. It seems obvious you would want to solicit input from the audience you hope to attract, but I have not seen this happen. I do NOT want to hear one more neurosurgeon's step by step instructions re how he does DBS surgery. Talk to us about who is a good candidate, what the success rate is and what constitutes success, what are the most common things that go wrong... please don't tell me what kind of wire you use, how thick it is...I'm not going to be attempting to perform this surgery any time soon. I realize this seems like a small issue, but if the orgs don't give us a voice in this, they surely aren't prepared to allow us meaningful input in more important matters.

Lenore, i agree totally with your statement: "I, too, am tired of begging to be invited to sit at the larger PD-run organizational tables. And...I'd LOVE to be part of something constructive formed by PWP's."

The orgs have power over us because we have given it to them. In the words of Dr. Phil, "We teach people how to treat us." It's time to build partnerships with all members in equal standing. I'll bring my own lawn chair if i can't afford the one at the table.

sheryl