[Curious]

I'm butting in as usual.

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.

[paula_w]

Curious,

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

paula

[jackiehc]

Originally Posted by SherylJ

Peggy, of course we have to work with all stakeholders, but the time has come for the balance of power to shift. Patients are the customers of the orgs and pharmas and the customer's needs should always come first if a business wants to be successful.

Off to Iowa. will try checking in tonight from the hotel.

sheryl

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

[indigogo]

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.

[paula_w]

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

[leonore]

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

[indigogo]

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.

[paula_w]

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.......

paula

[Jaye]

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?

[caldeerster]

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.