I posted this some time ago and it got barely a nibble. Let me try again and see if more people will bite on it.

Activity on this board reminds me a great deal of activity on the Stock Market. A stock is put "in play", there is a great deal of buying and selling activity, it rises and then falls back to near its original level. On this board, an idea is put "in play", it attracts interest, eventually runs "out of gas" and disappears into the archives seldom or never to be resurrected.

In a previous post I had indicated that if we are to achieve any kind of recognition from the (medical) PD community we need a track record. By this I mean we need to have members of our community publish papers in peer reviewed journals. This is not an entirely off beat idea. Some of you have spent an enormous amount of time collecting PD literature. Why not assemble this in a large review paper? Indeed, it could be published in a series of papers, since the literature on PD is so vast and varied.

Similarly, it would be helpful if some of us had a track record on securing research funding. Again, not an offbeat idea. I have a colleague who set up a research lab in his basement which was funded for a number of years by the National Science Foundation. Another colleague is in the Geology Department of his University but is funded by NIH on the strength of an idea he had. If you have a viable research idea and lack the laboratory or other logistical resources to carry it out you can ally yourself with someone who does have the University resources. This has been one of the beauties of the Internet. In some cases, I have never met my co-authors. Our collaboration has been entirely through the internet. I have no idea of their lab resources and they have none of mine.

Finally, I have been thinking of ways to give our malady greater visibility...and I've come up with the idea of a book. What I have in mind is a book of vignettes written by people with Parkinson's, their care givers, even their doctors. I got this idea by reading posts from people like Rosebud, Steffi, Paula and ol'cs. In reading their posts, I have often thought that they deserve, and this malady deserves, a wider audience. Their posts are filled with hope, anger, setbacks, humour, all that we should share with a non-pD audience. Some of the vignettes already exist in the archive but others could be gleaned from the PD community.

What do you think? Remember, I look upon this as something more then stock pick that is being put "in play".

All the best,

Lloyd

dear lloyd
I know absolutely nothing about the stock market,
because I have nothing to put into it!
He who owns stock, does not live in my neighborhood?
As for diseases -
This is not an ad or campaign it is life saving - for humane human's ideaology

So what it all boils down to for humanity is not just for us, but for all who are ill, to help by investing our lives into saving others lives.

and I have seen this done by many - and seemingly it just don't make the news, unless you can put a humane article on the stock market pages?

This is an ambitious idea and unfortunately, one of the things that we Parkies seem to lose along with the dopamine is ambition. I think that may be one of he reasons why this disease had so little exposure until MJF came along. I know this isn't true of everyone (is anything?) but as for me, I've experienced a gradual loss of initiative, decision making skills and competitiveness. It's one of the things I need to rise above. Doing something proactive and positive is so important, and it's the only way we can fight back.
I think that Lloyd has a very good idea here; the great thing about the internet is that it gives regular people an avenue for achieving all kinds of things; an avenue that didn't exist. Look at the books and videos and artwork and music that have been published on the web which may never have had an audience before. I'm not sure exactly how to turn this to our advantage, but just the exposure has to help, right? I like the idea of a book, for one thing. It's amazing to me how little the public knows about Parkinson's. I knew practically nothing myself, I have to admit.
Maybe this book could also include artwork...? Just a thought. My short exposure to the Parkinson's community has convinced me that there are a lot of creative and expressive PWPs out there.

Marian

Lloyd, a coalition of patients, especially those who are very active in the community? Maybe.

In addition to what you have said, Lloyd, I would like to see PD visibility in the same fashion as so many other "well known" diseases:

• PD Ribbon...multicolor, as in no two of us is alike...or something similar to autism puzzle pieces
• Like MS and other diseases, donate at the grocery register, gas station, etc...get that paper thing you write your name on and the store hangs it in the window
• Joint effort by the major PD organizations/foundation for TV awareness campaign...cancer does it all the time (that is if the major orgs can actually come together and do anything)

Lloyd, I hope you have had a thorough visit to www.pdpipeline.org . The Pipeliners have done a lot of what you describe, and just this last week at the BIO conference helped spread the word about patient needs and views. Next stop is, I believe, the NPF YOPN meeting in Chicago (see www.parkinson.org), where they are doing one of the breakout sessions, as they did at PAN. Do I hear a round of applause? I can attest that Pipeliners is well known by doctors at the Udall Center I go to (and that they read what I send them about patient opinions on this forum).

You, too, can be a Pipeliner, and help track drugs in the pipeline from first awareness about them to FDA approval and beyond (see www.pdpipeline.org for how). There are a lot of Pipeliner jobs, for example, I do copy-editing and spiritual support, and I look for off-the-track stuff on the internet. Paula even mentioned me in the thread "GDNF clinical trial results": "... you are right about the tape, ...Jaye found it online and we sent it to 60 Minutes." That was really a thrill, seeing a piece of the evidence I found on 60 Minutes. We meet in a phone conference once a week and operate by consensus under the directorship of Perry Cohen.

Many PWPs from here have become leaders in the PAN (Parkinson's Action Network) organization, attending their forum each year and lobbying their members of Congress and Senators. At the state level, funding for stem cell research can often be credited to PWPs who testified and politicked even though they felt like lying down the whole time.

I see this board as being for personal support and information. For years, in addition to the wonderful tons of support I received, I did my primary advocacy of patient education here and hope I'll be able to return to that. I don't think I personally could get published in a peer review journal, but some of the publications aimed at patients accept articles, and it's a start. In that regard I'm starting to write and honing my skills (which I also use for church work) and learning to use my MacBook to best advantage, and hope to have a blog available by the end of the summer. What about a bunch of blogs all on the same website?

There is so much being done, I guess I don't understand why you (and Rick Everett) seem to want to start up something else. Feel free, of course, but why not join in the fun that's already going on? Have I misunderstood what you're asking?

Jaye

I don't know if Lloyd feels it this way, but I think that some of you rapped his nose rather sharply about this. Using stocks for a simile was not an elitist statement, it was just a simile. And though all of the things you mention are taking place, Jaye, there is still room, and I think need, for preserving the wonderful and creative and poetic and clever and often very funny thoughts on PD and life, and life with PD in this forum.

Unique posts simply slide down the page and are lost in the great volume of information that pours in daily. The information is vital, but the humanity, the feelings, the philosophy, the creativity, are just as vital and I think even more helpful than facts and figures. It is the sharing of thoughts that help us live with the problems we share.

A collection of writings from here in bookform is a good idea, as is a periodic collection published as a separate blog, or in any form that saves the gems.
The best solution would be to keep the bulk of them where they could not just be read again, but also still be commented on. Great subjects would then be kept alive for the next generations of PDers to read and react to.

Keeping track of research I will leave for others to comment on, except for the research being done here by PDers. That needs collecting and preserving.

And then there is my own brilliant and by now aged idea of a red cane to signify PD. When I was new here and full of suggestions, my nose was rapped too. It is still a bit sore about the red cane, so in conclusion I'm going to hit all of you on the head again with my red cane idea.

They nod and they smile,
They have been here a while
At the table across the aisle.
The food is devine
And so is the wine
The service is fine
We often come here to dine

A nice looking couple
The pleasure is double
Their English is quite without trouble
They are tourists on tour
To see heath and moor
They can’t be too poor
If they dine here ce jour

We smile and we chat
“You must see this and that”
we say, since we know what is what.
They thank us and say
That they wish they could stay
But they’re on their way
To bed after such a long day

Now imagine the shame
when the waiter came
and the wife was so drunk
without help she’d have sunk
right back in the chair
she came close by a hair
she could not stand at all
I was sure she would fall
I’m disgusted, I’m sad, I’m appalled

Had the 'drunk' wife had a red cane, and had a red cane become a universal symbol of PD, this and countless other embarrassing situations could be avoided.
So that is my theory, my own, and I made it! ( quoting John Cleese in a Monty Python sketch).

birte.

I didn't reply to this thread because I knew I had no additional time to become involved in anything too major, not because I didn't think it was a good idea.

Birte and Lloyd, I always enjoy your posts, I recognize your wit and identify with it.

I understand what you mean about the place being so research oriented. This reflects the progression of people who have been here awhile, as well as a new group who are research oriented.

This should not stop you or anyone from posting other types of threads or collecting them. This forum belongs to you as much as it belongs to anyone.

I guess what I am saying, is when you have an idea, you have to be the one who works it, as some of us are already very committed.

Lloyd, this forum can be a tough sell. [sell used rhetorically] You will find your biggest critics right here sometimes. Groups and ideas have sprung out of it, but I haven't seen too much collaboration within it in terms of publishing. That's no reason why you couldn't be the first.

I hope those of you who are interested are the first.

paula

But the problem IMHO is that this forum serves multiple needs. The social bleeds into the serious into the humorous into the supportive and so on. All are needed but each needs a place and, as was pointed out, Lloyd's suggestion should have gotten a little better treatment or at least consideration. Of course, look who's talking. My ideas get a wide range of reactions but that is to be expected when they are so darn brilliant,

I don't know what the solution might be but one of the great things about this forum has been the quality of the people. So many others groups are made up of poor PWP who are just waiting to die. No sense of hope - apathy reigns.

For myself. I'll keep throwing things at the wall and see what sticks. I'm always open to suggestions.

Carolyn's input on this subject seemed so much "in line" with my thoughts about PD visibility, i.e., a "lesser scale"approach. There is no doubt that the more formal, higher level of visibility by those engaged in proactive activity on a larger scale, e.g., corporations, research institutions, etc. is so important and absolutely necessary...but, it has been my contention that PD must be brought to the attention of the "everyday people"....those with who we come in contact on a personal basis who have not a clue as to what Parkinson's Disease is and how it affects not only the lives of those afflicted with this disease, but also the lives of their caregivers. I admittedly knew NOTHING of this disease before my pwp was diagnosed. I had seen "old people" whose hands shook, but I attributed that to "old age"...still not knowing or realizing what the real cause of the trembling hands was...and only the trembling hands were noticeable to me giving me absolutely NO idea of the extent to which PD can affect a human being in so many other ways. In my experience, too, there have been NONE in my life...family, friends, acquaintances...who have had ANY knowledge of this disease, and I am so often tempted to write a generalized "brochure" for these people to read..and, more specifically, to include in this writing my own personal experience with PD as a carepartner to a pwp...to put a "personal face" on PD in an attempt to make clear the devastation of this disease. One of these days, I hope to write and print even a brief brochure...for family, friends, acquaintances and coworkers..and, too, I am thinking seriously of writing an article for our local paper(s) that have a very large reading audience. It almost angers me, at times, that all the other "wonderful causes" seem to have so much more exposure than does the cause of Parkinson's Disease. Perhaps my view on all this could be considered to be a "nibble" rather than a "bite"...but many nibbles could result in that larger bite that is needed. I sometimes think that we don't believe that we on that lesser level that I referred to earlier can make a difference...and as long as this is our belief, of course, we cannot and will not make a difference. It has occurred to me that my not having taken any action as I have proposed I would like to do is the result of my thinking that one person cannot make a difference. I, for one, intend to change my own thinking about all this because I would like to think that I COULD make a difference along with many others on the "lesser level".

Therese