[paula_w]

Carolyn.

You have hit the nail on the head. I applaud you thru my own tears. And if you are wondering why we are talking flying helicopters and video fantasies, it's because the psychosocial isolation and mental aspects are just as profound as the physical - more so. If we make one -it needs to show this chemical insanity and depression.

Thank you Carolyn,
paula

[reverett123]

I've been following along and would like to make another round of suggestions, comments, whatever-

If we are going to start anything worthwhile we want it to be as near self-perpetuating as possible. We are all sick and as time rolls on we will slip off of the stage as others slip on. So, the ideal is something that that runs itself, requires little money, has real value, etc. The critical part is the initial setting up of the project. It should be so obviously valuable that new PWPs are drawn to it enough to replace those of us who leave. It should be expandable when funds are offered and able to be scaled back when they are not. It should also be such that other orgs can assist as well if they wish but that their participation is not essential.

I think that a rough draft of such a project exists at the very site that we have been discussing - PLM. The collection of data is a great idea, they just implemented it poorly. I would suggest that the initial project be to prepare a comprehensive questionaire designed by the combined efforts of patients, researchers, physicians, caregivers, etc. The project could begin by soliciting suggested questions from that community whose answers would fill gaps in the knowledge that exists. Once those questions were compiled andwith Doc John's generous offer, it should be a simple matter to set up a survey software system that would pretty much run itself.

Now, obviously there is a lot more to it than that. Once it was running it could serve as the core of a comprehensive website to which access was granted to those who took the trouble to wade through the questionaire, for example.

Those who became members could be on a mailing list that could generate issues-related emails and letters could be another.

Leading researchers could be encouraged to involve their students in the project analyzing data, designing new questions, etc.

There are dozens of ways it could be of use. One of the most important would be to make the group name a household word.

We could call it the Foundation if you like - any Asimov fans here?

But seriously, something along those lines would meet most of the requirements. No doubt there are others.

Originally Posted by paula_w

Carolyn.

You have hit the nail on the head. I applaud you thru my own tears. And if you are wondering why we are talking flying helicopters and video fantasies, it's because the psychosocial isolation and mental aspects are just as profound as the physical - more so. If we make one -it needs to show this chemical insanity and depression.

Thank you Carolyn,
paula

[indigogo]

Rick - I like your ideas about organizational structure.

Not sure I think we need any input from researchers. Goes back to my earlier question: are we proposing an advocacy network or a source for scientific research?

I come down on the side of harnessing the patient voice to wield influence. I'd rather it not just be a source for data harvesting.

I think we could implement surveys for researchers, but I think the mission of the organization should be a place for coalescence of patient (and caregivers) views on all topics of concern. It should be run by patients for patients, taking in consideration of our accumulated weaknesses, limitations, and strengths. Researchers and physicians have their own platforms now. We can interview them, get advice from them, but decisions should not be made by them - just as their orgs. are set up now.

It has to be completely distinctive, and offer a truly original perspective.

[Jaye]

Our greatest personal need is a cure or a markedly better treatment.

Our greatest barrier to new drugs and treatment is the lack of patients available for and willing to participate in clinical trials.

Our greatest task is to reconstruct all aspects of the clinical trial process so that they are not abusive, and so that patients are willing to undergo them, and not just for their own short-term gain.

To do this, every patient who wants to help will feel the need to make some kind of sacrifice for the next generation, despite their personal wishes to the contrary.

They can operate at different levels and receive "points," and thus honor, for their efforts, from telling a grocery clerk WHY they are fumbling change and where they can offer to help (raising community consciousness), to holding webinars to train patients and every kind of physician so that they are motivated to help.

The clinical trial process MUST be transformed, as DocJohn's group (nouns are hard to recall for me) already knows. they even know what must be changed. Doctors must feel almost as trapped as we do. We need to help them make it work.

Now I know why some of us are still willing to volunteer to be Clinical Partners (which is an actual term for the patient who contributes to the effort more than just ttheir body).

Why are we not sitting with our own physicians and helping them find out what is needed and what they need to know before the research begins?

Why are our researchers still setting "end points" for research studies that can be jotted down without ever talking to the patient, as if they were still rats in a cage?

Why are the e-patient scholars NOT e-PATIENTS? OK, they study e-patients. Now they can empower e-Wizards.

We don't need travel funds, friends, because we're already everywhere. we need media in every PWP home. We need to communicate, communicate, communicate--everywhere, many of us, all the time, until we change the world by transforming relationships. DocJohn can help us there and a lot of other places?

WE will meet on in small storytelling groups, and record our stories and use them as a a resource.

Each pod of storytellers would have access to experts or wise ones in other groups (perhaps those who have a lot of points for discernment or story interpretation). Most of the leadership will occur as individuals levitate themselves by the power of their ideas.

With the wisdom we gain we will educate and be educated as long as we can draw breath. Groups may form and disband around video efforts, petitions and the like. Some of us will appear as TED speakers (Google it).

No PWP without a laptop with communication software, which they caan keep by earning so many points a year.

Don't anybody say it won't work yet. There's still a lot we don't know about how it's going to work. Give yourself an hour to believe it's possible, then believe it's already happening.

Jaye

[Stitcher]

I don't feel that PLM does it poorly, they just don't do it in a manner that is appealing to many of us...the patient population.

Here is part of what I posted above and deleted:

What is it? (I am not writing this in support of PLM, but because one can not condemn something without having honest knowledge about it.)

It is a somewhat social place on the Internet for PD, ALS, MS, HIV patients (on disease specific board) to share, just as we do here on NT, but it is a very different place INDEED! There is also the relatively new MOOD board (for mental health discussion).

Yes, I know that some here and elsewhere view PLM as "fluff," and I will admt that they group frustrates me to the nth-degree form time to time, but I DO participate in PLM. My primary goal, since it is grossly lacking there, is to share information about PD and the Community. SADLY, I don't find many takers of the "facts and figures" I share and other Internet resources, but there have been a couple of takers.

Seems that once PLM is found, few want to venture away. It is very attractive in appearance and is a VERY BUSY forum. I fine this very sad. I also find it sad that many have become PLM groupies...oh my gosh!!

There were eight PLMers at YOPN...3 yrs dxd, 5 yrs dxd, 18 yrs dxd, 23 yrs dxd...five had never been to a PD event before and none, to my knowledge, are members of NT.

To demonstrate the power of sharing: I received a Private Message from a PLM member a few days prior to YOPN. She said she was attending YOPN and that it was her first PD event. I assumed this meant that she was somewhat newly diagnosed. If I had looked at her profile I would have noted that she has had PD for 23 years. I didn't look and note this and assumed that she was newly diagnosed. PLM was the first PD community she had ever participated in and YOPN her first event...23 years!! She found out about YOPN only because I had posted information about the event many times and she was intrigued.

As I said in a prior reply to this thread, I find that NT is where (my personal description for lack of a better description) I find the intellectual discussion and minds, PLM is where I find the "just found the Internet" patients who are far more social.

As with NT, PLMers come from all over the world.

The part of PLM that is not so savory for many of us is their use of the information by way of Journal of Medical Internet Research (JMIR) shared by members of PLM, 1) PDRS self-scoring, 2) Prescription Drugs taken, 3) Supplements taken, 4) self-defined Primary Symptoms and Secondary symptoms, as well as 5) initial diagnostic information. I was drawn in myself, but have deleted that content from my profile!

PLM has a place for those who have not found other Internet resources for sharing. I also find that once on PLM, people tend to NOT want to venture anywhere else. I suggest NT, etc, but I have yet to find any takers.

One of the more recent discussions on PLM was neurologist versus movement disorder specialist. The originator of the topic did not see the need for an MDS.

PLM was not just a fluck, but was started with good intentions: "Founded in 2004 by three MIT engineers whose collective experience spans from running the world's only non-profit biotechnology laboratory to large-scale online commerce applications, PatientsLikeMe is a privately funded company dedicated to making a difference in the lives of patients diagnosed with life-changing diseases. Our personal experiences with ALS (Lou Gehrig's disease) inspired us to create a community of patients, doctors, and organizations that inspires, informs, and empowers individuals. We're committed to providing patients with access to the tools, information, and experiences that they need to take control of their disease.

"In 1998, a young carpenter named Stephen Heywood was diagnosed with ALS. The Heywood family began taking charge of Stephen's care, searching the world over for ideas that would extend his life and improve the way he lived. This set in motion a series of events that have led to PatientsLikeMe, a new system of medicine by patients for patients. We're here to give patients the power to control their disease and to share what they learn with others. We're here to help you."

Back on topic:

I received an email this morning about someone on another board that was seeking information about DBS.

The basic question was, Why is there not a single place on the Net to obtain information about DBS successes and the physician's who have the best performance history and programmers of the same?

Of course, this would take a major undertaking and cooperation from the medical community. I don't see a current foundation or org that would undertake this. Too much liability, etc.

A single place for PWPs to post information about surgeons and neurologist.

Yes, I know that we are all "suppose" to flock to your nearest renowned/affilitated MDS and be satisfied with this.

Yes, it would probably be a bit biased; e.g. I think Dr. Shulman is a dynamite clinician, and has the best table-side manner and is an excellent listener, but I am only one voice and someone else may think otherwise. Our own personalities as they blend with our physician's is what would be found in such a "database."

But it would be nice to have a single place where one could find such information.

[Jaye]

Originally Posted by Carolyn

But it would be nice to have a single place where one could find such information.

OK, I'll get my head out of the clouds and tell you something practical.

Angie's list is a database of members' experiences with home maiintenance and improvement service provders. It recently expanded to members' ratings of doctors and descriptions of their experiences.

The drawback is that you have to pay a pocketful of money to join.

http://www.angieslist.com/

Jaye

[paula_w]

I like Rick's idea because helping researchers is helping ourselves - no? ok maybe we will help to change that...lol.

Another variation might be to collect the email database here at neurotalk and make it available to researchers who apply for it. The application could be screened first, and if approved, then the researcher could tap into it either through email, survey, phone, however. It would be free. There could be requirements for researchers to meet. All we have to do is supply the emails and the rest would be between individual patients and the researchers.

just more food for thought- we don't have enough,
paula

[Stitcher]

...this is an outlandish idea, but my mother raised me to ask before assuming. But, if we don't like how PLM uses their data, how about petitioning them to change the process of research.

[paula_w]

Jaye,would you please post a link to where you mean about Doc John's group? i know who they are but it's time we all read the specific things you are referring to. I know we are going to learn something, because Dorothy Makes It All the Way to the Wizard. Did I say that out loud? lol whoops. Oh well - Follow the yellow brick road.


paula

[paula_w]

Originally Posted by Carolyn

...this is an outlandish idea, but my mother raised me to ask before assuming. But, if we don't like how PLM uses their data, how about petitioning them to change the process of research.

I think we should have a rule that no idea is outlandish; think of all the good ones we'll never hear. And Carolyn that is a good idea. I think we should figure out if it's worth it to try to work together or compliment what they are doing but we shouldn't duplicate i would think??

paula