I'm butting in as usual. :D

Jean, the PD tulip logo I put on my website gets attention. Atleast 3 or 4 emails daily asking about it or complimenting it. Questions on where to find more information. (which I give links)

My business is a health club. It's local and doesn't get hits link national or franchise clubs do. Can you imagine if those put even a small banner ad on?

I am going to order from the Cafe Press site. Just putting the tulip in a window is awareness. Or wearing a t-shirt. Lil'Monkey is 14 and thinks they are great.

Back to your regular scheduled programing.

Curious,

You are not a butter inner, a butt inner, a butter in.....;)

paula

My two cents' worth
 

I remember when I was first diagnosed with PD 10 years ago, I could not for the life of me understand why there were so many PD organizations. At the time, I couldn't tell how they differentiated themselves. I had high hopes for the NPF-PDF merger but we all know how that turned out.

Having worked for non-profit environmental orgs for 20 years before going on disability, I take exception with some of the generalizations that some folks have made about non-profits.

1) If someone is going to work full-time (or more) on an issue, I think that they have the right to be paid for that work (but salaries don't have to be exorbitant). After all, devoting themselves to the issue means they can't do something else, and unless you are independently wealthy or somehow making it on Social Security/disability, everyone needs income. Society doesn't seem to have a problem with the notion of paying someone to be a receptionist or a communications manager or web designer if they work at IBM or Ford Motor Co. Those jobs are just as necessary and as challenging at non-profits.

If organizations have employees rather than all volunteers, there is legal oversight and recourse if someone is not doing their job. Some volunteers have a tendency to feel able to "blow off" responsbilities because they don't feel obligated to follow through.

2) If there are paid employees, there can and should be job descriptions and individuals should be chosen to suit that position. With volunteers only, you have to take what you get.

3) I don't think there can ever be a PD org comprised solely of Parkies (sorry if that term offends anyone) and care partners. Our lives are simply too chaotic for us to do it alone, and let's face it -- this is a progressive disease.

HOWEVER, I do think there is a way to improve the current situation, although I haven't quite figured out what the alternative might be.

A couple of "models" or "mindsets" to consider:
- in the disability rights movement, their motto is "Nothing about us without us." In other words, we need to be involved in organizational decisionmaking at all levels.

- a coalition with a tight mission statement might be more palatable to the orgs than another org. I am thinking of a couple of coalitions with which I've been involved (see Health Care Without Harm and the Collaborative on Health and the Environment (I can't post links because I'm new, but if you want to learn more, just Google them). These are meritocracies (those who want to do the work do it and thus become decisionmakers). I know of a couple of foundations that have been interested in funding such efforts.

= I spent many years opposing things (garbage incineration, whale hunting, etc.) I have found that it is much easier to get people on your side if you turn that opposition into a proposition (e.g., I am FOR recycling, reduction of packaging, and composting of food waste, as alternatives to burning garbage.) It's worked for me, anyway. No one thing works for everyone.

I believe that each of us needs to decide whether we are going to focus on being activists, or advocates. (My working definitions are: activists are willing to take non-violent action to change "the system" if necessary; advocates worth within the system. BOTH ARE NECESSARY. It's just a matter of deciding what you are willing to do.

Maybe this has already been suggested and I just missed it, but I'd like to propose that those of us rabblerousers who are interested in discussing this further and are also going to YOPN rendezvous in Atlanta. What do you all think?

Sorry for the lengthy posting!

Jackie

Excellent advice, Jackie! Unity should be approached as a positive, not negative, proposition. There are many options.

I think it would be great if those of you who are going to Atlanta get together for a discussion.

welcome jackie
 

HI Jackie,

Nice to see you here! We need all the input that anyone wants to give.

I don't think we are talking about a full-on organization...are we ....anyone? lol But we do need to be organized. This has been hovering as an issue for a long time. Yesterday, the universe hit Todd on the head with an acorn that said "post this". Don't ask me to explain how acorns talk.

As you can see the advocates/activitists/ agitators/idealists/ all jumped on it, because lack of unity and communication has brought progress with much of what we want to do to a very slow pace, if not a halt.

We are not trying to cast blame; indeed I think we are being very careful to voice our thoughts about those who are supposed to be saving our lives and are trying to clearly define the problem. Your comments are very useful here and come from experience. We also need your input about welders lawsuits but that's another thread.

I hope you keep them coming. I couldn't agree with you more about proposing instead of opposing - or whatever words of wisdom you chose to that effect.

Also, meeting in Atlanta is fine for those going, but I think there should be multiple discussions and meetings. Again, I would also like to suggest a less expensive and more casual get together in Peoria - in a parking lot with bands - on September 20-21. Cheap hotel rates, only a registration fee of 25 dollars if you want to do the short and pleasant walk along the river. Time for conversation all day long, best bands around on stage. There is an adult stem cell lab tour included with a research team. We are trying to take this annual function to another level with this research team. Open dialogue about collaborations is on the agenda, with patients being there from day 1.

Shake, Rattle, and Roll

paula

What's Wrong with PD Community? our executive functions!
 

ok. I'm being a little facetious. But seriously, what's wrong is that we with PD have the best and most creative ideas for addressing our needs at a high level, because of our sense of urgency, and because we are just an amazing group. But, although many of us used to be so high-functioning and able to get things done so efficiently once upon a time, we can't be in charge of organizations, anymore, because we have such ridiculously compromised executive functions! Those who are in charge and who don't have PD don't have that same sense of urgency, and operate at "normal" levels of viewing time, appropriate to those who expect a long life. Our condensed sense of Time gives us, I think, more compact and streamlined solutions to Big Problems, (esp. those which affect us, but not limited to those)

Those running big PD organizations, while often well-meaning and good people who do great work, don't seem to get that if they put us at high levels of creative input, feeding them our ideas,they'd get so much more done that would truly be helpful to our community! They'd be able to shave off all of the unnecessary, wasteful duplication of services, and cut to the important issues that need to be addressed.
Obviously, having one umbrella PD organization with a central web site would be the most useful idea of all; it could be one that was the initial place the newly diagnosed would go for resources, and provide links to all of the multiple services already available. Those would include links to sub-categories such as major PD organizations and their services; a list of advocacy organizations, like PAN, and sites like stemcellaction, etc; a category of e-newletters and snail-mail newsletters and list-serves like Neurotalk; links to clinical research sites; a category with a list of books, dvd's, for folks with PD; recommendations for complementary treatments and links to those sites; a category for support groups and conferences,etc.
So, let's create that! What do you all think? Leonore

Leonore - the Parkinson's Disease Foundation is currently working on an online resource guide that is attempting to be comprehensive. We'll see what happens!

I agree with your statements about executive functioning; we can't run our own organization, but our brain power is enormous. I wish the orgs would see us as partners rather than clients.

have to step out
 

Brother coming in from Texas. Be back later. Lenore, executive functions? What executive functions.....now did I take a shower today yet or not? No! Because I am still in my pajamas.......:p

paula

Executive function R us
 

B-b-b-b-b-but it IS POSSIBLE to retrain the brain to handle some executive function that has been lost. It was explained to me by a neuropsychologist who specializes in PD that this is because, while the motor pathways are in a more primitive part of the brain and thus are limited in number, the possible pathways increase geometrically in the higher parts of the brain like the cerebral cortex. Tenacity pays off, and one can learn to force a different part of the cortex to take over waning function. Don't give up! ....er, but try to get someone else to handle your finances.

Do I get the sense that this grassroots cloud will be doing mostly classification, analysis and evaluation of existing systems, and that it will generate general policies ("nothing about us without us") for independent activists and advocates to support and put forward? Sounds like a loose-knit website staff to me.

Do we change things or do we influence them, for example: Do we train patients on how to get the most out of their doctors, or do we point them to the care notebook published on one of the orgs' website because we have a policy of smartening up the patient population? Perhaps in another part of the cloud, someone is working on discerning how much it cost that org to develop the notebook system, for whatever reason.

Jackie (and it IS a pleasure to see you here), maybe you're right about solely Parkies not being a good idea, and I'm the worst offender, but I know people who get to everything two hours late but have shaken the world on its foundation. There are many, many ways to get things done. We must celebrate diversity and encourage one another, not to do everything in lock step, but to celebrate anything that makes each day a productive one.

Jaye

How many of us would be willing to work anonymously (to the user), to avoid the temptations and taints I described in my earlier post?

reverett is on the right track
 

If you go to Wikipedia and type in Act Up - virtually every question/idea that has been discussed in this thread was addressed by this organization. Extremely successfully, I might add. They singlehandedly pushed the political system and the pharmaceutical companies with such fervor that the money eventually followed and new treatments were developed with unheard of speed.

as i have stated in the past.....
 

my fantasy is to surround the capital with Parkies, holding hands, with luck it would rain. We could have people with loud-hailers admonishing the cops not to use Tasers because many have DBS's and the shock could fry their brain!! The possibilities are endless!!
It would certainly put us in the limelight.

Charlie

activism
 

IF we act up, it probably needs to be with other illnesses and conditions, who are going through the same thing anyway. pD does not have the numbers that the Aids movement had, or cancer or alzheimers. Many pwp don't know they have it, remain anonymous for many reasons, etc etc.....we are a relatively small population. Not enough to act up in numbers. But we could become very creative with You TUbe and a website. Peg, can you start designing political cartoons - they will be needed. Anyone else do cartoons? i envision blog, debate columns, guest columns, and video interviews.

Carey and i discussed doing an agitator /idealist column on a regular basis.

Let's kick up some dust....patient dust. The kind that gets in your eyes and burns......I'm not in the business of pushing clinical trials just for the sake of them. They need to show the benefit to all - that's a bill or a reg that is changing somewhere isn't it? i'll check tomorrow - visited with a brother that i hadn't seen in way too long today. As usual, we just picked up where we left off.

Reminiscing - I do a lot of that right now. It's rejuvenating to do it, put it away, and move forward.

i have made a resolution - no more guilt [unless i deserve it]. i'm finishing this battle as me, not as anyone who has to please someone else, because in being me, i will naturally help someone else. i know who i am ....and where i belong.

I am proposing funding be sought for visiting and filming research for online viewing of what all investigators in labs and trials are actually doing -a must before considering supporting a trial through recruiting. We could compose our own list of researchers in need of help and willing to collaborate. Then we can try to match them with potential partners. I see a new database being needed, or fields added to the pdpipeline database.

Uber patient may have to be approached, along with Kinetics Foundation. They still don't realize we deserve to be funded for innovation beyond speaking at conferences. We need to prove it to them. That means resources and unity.


paula

some thoughts about how to get started
 

We'll need to brainstorm and come up with a list of short-term and long-term goals.

Once we have some goals, then list our resources (or lack of) and decide how best we can accomplish our goals. Resources could include such things as:

• funding (or lack of funding)
• time (to accomplish tasks)
• skillsets
• volunteers
• critical tasks that we must pay for (?)

In starting a grassroots campaign, there are many things that can be done for little or no cost.

• Set up a yahoo group (accomplished, Carey)
• Buy a domain name ($7-15)
• get a web hosting package for ~$40/year
• set up a website (once we decide its purpose)
• Search and compile a list of web resources: blogs, boards, and other places to post
• Compile a list of names in order to email potential activists or advocates
• Write articles, letters, board messages, emails
• Respond ...

Anyway - just some initial thoughts to add to the thread.

Lots to think about. But I firmly believe ... a small group of thoughtful, committed citizens CAN change the world...

Now time for bed!

Going back to my corner.

Shouldn't have unintentionally attempted to squelch the energy and momentum.

Great ideas, Jean! You're right -- that is a good list of tasks. However, first I think we have some honing of our message to do. Is our message "Unite now, pool your money, find a cure!" Is it "Involve Parkies at all stages of decisionmaking?" Is it "WE want to decide what the missions of PD orgs should be?" I see many possibilities, all of them noble.

About 13 years ago, I attended an organizer training at which a diverse group of 40 enviro activists were asked to answer these questions individually:
1) What do we want?
2) Who can give it to us?
3) Who are our allies?
4) Who is standing in our way?
5) What do we need to do to get what we want (strategies/objectives)?
That was hard enough for each person to do for his or her work. Then we were asked to put them ALL TOGETHER.

I feel like we in the grassroots PD community need to go through a similar exercise. It feels to me like we need a meeting of about 3 days with a good facilitator to hammer out the answers to those questions. Then I would feel ready to talk about what to put on a website, etc. But this is just how MY brain works -- doesn't mean others agree. I'm just throwing the idea out there.


Jackie

Professors AND Patients
 

A friend of mine is working with a media consultant to make a database of patients and scientists who are sort of an "emergency response team" to comment on studies as they are published. Right now, he's interested in environmental health topics, so I guess he'd be wanting people who could critically evaluate research papers and projects, but I think there are two important concepts for us:

1) involving patients more directly in the research discussion and fostering personal interactions btwn Parkies & researchers; and
2) involving Parkies in the media and communication of research. We're the ones with the disease! Why shouldn't reporters talk to us as well as the guy who spends all of his work hours with lab rats?

I'll shut up for awhile now.

JHC

we need a business plan
 

[QUOTE=jackiehc;337455]Great ideas, Jean! You're right -- that is a good list of tasks. However, first I think we have some honing of our message to do. Is our message "Unite now, pool your money, find a cure!" Is it "Involve Parkies at all stages of decisionmaking?" Is it "WE want to decide what the missions of PD orgs should be?" I see many possibilities, all of them noble.

About 13 years ago, I attended an organizer training at which a diverse group of 40 enviro activists were asked to answer these questions individually:
1) What do we want?
2) Who can give it to us?
3) Who are our allies?
4) Who is standing in our way?

This is exactly what I meant when I said we need a business plan. I would insert a few more key questions:

4) Who is standing in our way?
5) Why do they not want us to accomplish our goals?
6) What can we offer them to accept change (What's in it for them?)
7) What do we need to do to get what we want (strategies/objectives)?

sheryl

ideas for advocacy and activism-to you all
 

This is to everyone, and a special hi to Jackie! How nice to be another "new' member with you. And hi to Carey and Peggy... I'm so glad that your always-thoughtful input has joined in with this dialogue. You, of course, are so right about proposing positive solutions, as opposed to complaining.
Your point is interesting about "advocate" versus "activist." I am pulled in both directions. My activist side wants to do something on a very large scale to address the welders' needs and support them publicly, and to take on the PD doctors who are selling the patient popoulation down the river with their research bought by the welding tools industry, in order to make millions discounting the welders' claims.

On a "tamer" level," working within the system is certainly a possibility, in so far as to creating a resource "portal" for the PD community, newly diagnosed and otherwise, in the form of a website, or a new organization that would serve specifically as an entry portal to the complicated maze of PD groups and services. That comes from the part of me that is a social worker who loves connecting others to resources. Would you mind mentioning this to folks in Atlanta if you all brainstorm?? Fortunately, and unfortunately, my family leaves for our annual 2-weeks on Cape Cod Friday night.


A coalition with a mission-what are you imagining, mission-wise? oops-have to go. Later. Leonore

another suggestion or two
 

Don't overlook the power of letters to the editor of your local paper. That is about cheap and grassroots as you can get.

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.

If something shows signs of getting off the ground, I have a domain name I would be happy to contribute - "ParkinsonsOnline.net"

There is one caveat to that offer, I also have "ParkinsonsOnline.org" that I am (slowly) developing myself for educational purposes and want to keep. You are welcome to visit and see the tack I am taking, just wear your hard hat. :)

A possible video might be a series of short video segments (say 3 to 5 minutes) strung together in which individual PWP talk of what we face. An outline of critical points as a starter would be a good idea and then selection of the individual segments that best made those points. Put it on the website, Youtube, etc with copyright that allows free distribution. Maybe even make it such that a neuro could give a copy to the newly diagnosed to help them come to terms with PD. Actually, there is room there for three or four different ones. They could be an excellent way of spreading the new group's name around as well. Just splash the URL across the bottom of the screen all the way through.

Jackie / Jean - thanks for your energy!

I'm thinking out loud here, but wondering if some of the initial work you propose, Jackie - individual answers to the 5 questions - be done online and at home by as many people who want to get involved. We all have a stake. Answers to the questions can be submitted to a central location (perhaps the Yahoo group address) to be compiled.

At that, or some point, I agree, a face to face meeting is required to figure out how to take the raw material and turn it into a game plan. But perhaps the data collection can draw from a wider audience. This doesn't have to be "scientific", just a "sense of the community." Afterall, a meeting of several patient advocates with a facilitator is far from scientific - and that is how all of the work gets done now.

Determining the goal is essential. Personally, I'd like it to be more than just a declaration of intent, but also include a concrete outcome: 1. PD Community should organize more efficiently in order to accelerate a cure and expand quality of care. 2. Patients have the biggest stake in making sure (1) happens; one way is to establish an oversight/action committee comprised of patients and org representatives. Or something like that.

I have established a yahoo group to talk about this stuff, united4pd. Right now I have it set up as invitation only. If you would like to join, PM me with your email address. We can decide later if we want to go ahead and make it public.

My initial thoughts. What are everyone elses'???

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.

Jean, I love the PD tulip video
 

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.

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

independent patient advisory board-Yes!
 

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

Leonore makes a good example...
 

...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. :D



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. :)

what does pm mean?
 

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

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.

keeping it flowing
 

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 suggestions
 

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

good points carey and lenore
 

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

Client education and doctor-client relations: the reality show
 

I have been puzzling much over the matter of doctor-client relations, and would like to see it added to Paula's list, too. Following is an impression of the reality. How can we correct this picture and how can we mine our experience to hasten the maximization of the client's benefit from the clinical encounter?

Clients: you need to snow them with your knowledge--NOT! You have a few seconds at the beginning of the appointment to imprint on their minds your admiration for their amazing knowledge, with which they are going to solve the no-more-than-four succinctly stated problems with which you need help finding a solution today. Be articulate but not verbose. Provide only relevant information.

Doctors: the humbled person appearing before you seeks your knowledge, carefully injected into their situation, to give them the optimal improvement available under present circumstances. The want their own knowledge of this body of they have been living in all these years to be included in the decision. They know that pain is a subject you don't want to hear about, so be assured that when they say pain, there is pain above the bandaid level. Doctor-related anxiety may be one of the most severe challenges for the client with a chronic and degenerative disorder. And please, doctor, try, to take into account that this person has a heart, a spirit, a character, and some practice at being a human being. Not all these things can be quantified into fact, and the weight of your knowledge only outweighs the patient's in the area of medicine, if indeed it does that for this particular syndrome.

Just some thoughts.

left to our own resources
 

Yes Jackie - exactly. The whole point is to move faster in the right direction, not to look for someone to blame for anything. Initially as we dig, I would suspect the "conflict of interest" lines would make an interesting painting. But, perhaps we will be encouraged by what has been accomplished.

Here's an example of something that bothers the heck out of me. We are constantly being told that we must exercise and exercise vigorously and regularly. lol....how many advanced pwp do you think actually do that? PD exercise programs should be a funded mainstay of every local support group, including transportation. You don't need to hire an instructor - hold exercise webcasts or show exercise DVDs. This should come from the orgs [IMHO] or you have to throw in fundrasing for the exercise program to the list of advanced pwp responsibilities.

Symposiums are held to report the results of exercise and PD. But then the advanced pwp is left to his own resources to actually accomplish this - the last person who should be in charge.

IF the patient isn't going to benefit from the exercise research through provided help, who is gaining from this research?

paula

Great stuff!

Paula: "Looking at these serious concerns - there is a need for trust somewhere"

Jackie: "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"!

Sheryl: "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. . . .The orgs have power over us because we have given it to them."

As someone who has been invited to sit at the table from time to time, it is very tempting to not bite the hand of kindness, much easier to talk about the great people who get up everyday and go to work on our behalf; those who ask me for my opinion on new websites or awareness projects; those who look for money on our behalf, those who KNOW they inhabit a world where compromises must be made in order to do the work they need to do. I love the staff members with whom I work, and always appreciate their enthusiasm, creativity and long hours.

As I said, they know they operate in a compromised world. Conversations at PDF are very frank about what patient projects they can get behind, those they can't and why; conversations have been had about org unification, its history and future.

But there remains this obviously high level of frustration in the patient community. Something should be done, and none of us should feel too intimidated to speak out, say "thank you" for what has been done, but we want more ("What have the Romans ever done for us?"). Most of the time we don't want MORE work done on our behalf, we want DIFFERENT work done or a different focus. That's where we fall into the trap of the current situation, because the needs of the patients are changing faster than the foundations can keep up; their traditional sources of information and guidance are slow to change.

The dynamic that further works against patients is that in this compromised world, the compromise usually goes to further the agendas of the board of directors, the scientific boards, and the funders (mostly pharma) before the wishes or needs of the patients. We are last on the list.

Who is speaking for the patient without a filter and before the needs of another constituent? No one. There's not even a chair for the patient at that rarified place where foundations, science, industry, and policy come together. Today, at least we've been consulted, but then our opinions are always proferred by someone else. We don't set the agenda, or speak at the meeting unless chosen by someone who is not a patient.

I like Sheryl's line about bringing her own chair, but we'd have to break down the door as well.

It comes down to Paula's line about trust. It would be perfect if we could build it slowly and diplomatically throught the lines of communication that are now open, but we don't have the time or luxury for perfection. There's no time for business as usual.

Jaye - there are some very good clinical people working on this very thing; unfortunately, they are having a difficult time getting funding. This is a good example of one of the problems of the current system of every org looking for research dollars as their number one priority while other things, like a superior clinical experience, go by the wayside. It's another reason to take a critical look at just what each org is doing.

Relevant article in today's Seattle Times, hometown newspaper of the Gates Foundation, entitled, "Not many speak their mind to Gates Foundation"

The Gates Foundation says it wants to hear from its critics. But with so many in the global health world dependent on the foundation's cash, honest feedback is hard to come by.

Criticizing the Gates Foundation can seem churlish, like attacking Mother Teresa's wardrobe.

The federal government has nominal oversight to ensure tax-exempt money benefits society. But in general, foundations report only to their boards. For the world's richest philanthropy, that means Bill, Melinda and Warren.

http://seattletimes.nwsource.com/htm...ritics03m.html

bringing our own chairs...
 

Sheryl, Your post really struck a chord with me.

Yes, how many pwp have been consulted by our local orgs when they are planning upcoming conferences?

I don't want to hear one more technical description of DBS surgery. Let's get information that is useful for us -- yes, like who is eligible, what are the side effects, how will we feel after the surgery, and from people who have had the surgery - what surprised them the most? and so on.

What a great example of why we need to knock on those doors and when the door opens a crack, push in and bring our own chairs to the table.

Jean

different focus
 

from Carey: "Most of the time we don't want MORE work done on our behalf, we want DIFFERENT work done or a different focus."

Many of us responding to this thread have had an occasional seat at the table. Some have attended meetings. Some are part of patient advisory boards.

We can have an impact now if we decide to move forward and work together to make our voices heard. So let the discussion continue.

So let's join and continue to talk frankly (and privately) about next steps.

PD - the Champagne of Neurological Diseases
 

Rick - this reminded me of a picture I made several years ago; I finally found it (see attached)

Here's my Agitator slant on it
 

I don't need funding to look at the published articles on the topic, nor to look to my own 10 years as a very successful client and my impression of the experience of others on this board over that period. You don't need funding to enumerate the proposed studies that you are aware of. We don't need funding in the united4pd group to look critically at whether proposed studies are planning on asking clients the questions that clients want to be asked, and challenging doctors in the way we would like to hear them challenged. We don't need funding to think about how to dialog with the clinicians in a positive way (much more positive than the way I'm writing right now). Isn't this what "bringing your own chair" means?

I told you I had no sense of politics.

Jaye

Jean said, "Many of us responding to this thread have had an occasional seat at the table. Some have attended meetings. Some are part of patient advisory boards."

But is that attendance honestly heard or is the attendance for show; e.g. to make the org look like they care about the PWP voice? (And I don't include PAN in this problem.) Are the views and words spoken by the attendee taken seriously.

A couple of years ago, one of those attendee indicated in Jean statement said to me , "I wonder sometimes if there is a board meeting before the board meeting I attend." These words have haunted me and stayed with me every since. They were made by someone who has been involved is mega ways in our PD community.