[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.

[chasmo]

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

[paula_w]

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

[jeanb]

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!

[Stitcher]

Going back to my corner.

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

[jackiehc]

Originally Posted by jeanb

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!

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

[jackiehc]

Originally Posted by paula_w

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

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