Everyone who posts here, who has attended PAN forums, who has gotten educated about the science and politics of PD, who have then used your voices here and everywhere else to advocate for patients - have been heard by those with the power in PD research. You have been a true force to move the science forward. Of this I have no doubt.

We all are victims of, and players in, the times in which we live. We happened to get PD at a crucial time: at the advent of the internet. And we were blessed that Michael J Fox was one of us. As we congregated online, exchanging our experiences with each other and having scientific information available to us like never before in history, we discovered that our PD was nothing like textbook PD; that medications worked differently in each of us; that we were depressed or anxious or not sleeping or constipated or couldn’t sleep, etc, etc, etc. And it made us quizzical and then made us mad because science had basically stood still for the last 50 years – and we believed “them” when they told us we would be cured in five years – dopamine was so ‘easy’ – because that’s what we wanted to hear.

And we started asking questions. That’s where we get to the luck of Michael J Fox. He was, and remains, one of us. Active right here (on the old braintalk), exchanging notes and friendship with several of you, including Paula and Peg. Our great luck is that he was famous and smart and he thought like us. He could use the power of his connections to hire the right people, raise a ton of money, target and accelerate the research, and cure this monster.

Only this didn’t happen because his (all of ours) great plan and grand hope ran smack into reality. The science just wasn’t that simple. And progress couldn’t be made unless patients were included in the process. Because the answers lie in our bodies, our minds, and our experiences. Michael J Fox knows this, and the organization that bears his name knows this.

MJFF is doing already doing virtually everything you are talking about in this thread.

They are not using their money to duplicate and print more publications. They are investing $50 million of their own money to fund the Parkinson’s Progressive Markers Initiative (PPMI), a data collection study that will finally shed light on how PD biologically progresses in our bodies. Until then, new therapies are being developed in the dark. And putting their bodies where their mouths are, Debi and several MJFF board members are enrolled as controls.

They are taking the information and data gleaned from this study and putting it directly up on the internet, available to any scientist who wants it; who might have a new or revolutionary or even stupid or silly idea. The first data is already available and up for grabs.

They are in partnership with 23&me, plus have extended that partnership with Sergey Brin and his wife, Ann Wojcicki, who are matching all donations to MJFF through 2012, and Sergey’s mother, Genia Brin, is on the MJFF Patient Council.

That Patient Council has more than doubled in size, from 8 to 20 members in three years, and is brought together twice a year in meetings with researchers and is consulted regularly on other projects throughout the year.

Other patient advisory groups have been assembled to advise specific projects such as Fox Trial Finder and PPMI; they meet directly with researchers as well

MJFF knows and fully understands the unique nature of PD – partly because they read what you say here and listen to patients everywhere; partly because the science is beginning to prove our experience. As CEO Todd Sherer says, “we know it is much more than dopamine.” They get it.

The unfortunate thing about the time in which we live is that what is being learned will not be in time to save everyone. But that doesn’t mean good and smart people aren’t trying, or spending all of their time worrying about how to do better or more.

And it doesn’t mean your voices haven’t been heard or heeded. Because they have and they are. You would be hard pressed to find something here that they haven't thought of themselves - or thought about because they read it here.

Michael J Fox couldn’t, and wouldn’t have done what he has done if he hadn’t been inspired and influenced by all of you. And continues to be. I'd hate to think of where the research would be without him - if he had remained silent in the face of all this. But he didn't, because he knows we are right.

It was the best of times, it was the worst of times. We have fomented a revolution. Of this I have no doubt.

IT's daytime and i am off but not tired so perhaps i can say what i mean in a more gentle manner. Even tho laura and carey are saying different things, they both are true.

I personally get dyskinesia from all the drugs that came after regular sinemet. CR, Comtan, Stalevo, agonists, you name it. So you could say that nothing new has helped me in all the time I have had this condition. ..oh thank heavens for amantadine , which they tried to tell us only worked for about 6 months......false. oh i did begin with agonists..sorry. they helped me at the beginning. combined with sinemet they caused dyskinesia.

At the same time, I wonder how much money has been spent on research in the 20 years with pd with no results. I can't even imagine. It wasn't all bad research but it became a business.

I'm sure you would agree that they seem to know little parts of the loops and pathways but are working a little blindly and targeting the unknown.

and again, here is my question. for the same money, how much of the puzzle could be solved from having our individual genes analyzed? how massive is this request? it seems logical and i don't know how much the cost would be but i do know that people contributing are wealthy and have a stake in this too.

i get livid when i see a study that asks the question: does dancing help pd? the result was yes but more funding was needed to see which particular type of dance worked the best.

Laura - I didn't see your post until after I posted mine.

I think Michael J Fox is our Atticus Finch; I think MJFF operates in the world as you want them to. They have challenged the established ways of the NIH since the beginning - with success in changing the peer review process. They have challenged the secretive and non-collaborative nature of scientific inquiry by insisting on transparency and data sharing - and by bringing scientists from different disciplines together in the same room frequently and regularly and forcing them to talk to each other. Many of the wealthy entrepreneurs with PD end up investing in MJFF - look at Andy Grove (Intel), and the Brin Family (Google).

And MJF himself has appeared before Congress multiple times - and very publicly taken on the likes of Rush Limbaugh on our behalf and forced him to see the truth.

We need to do a better job educating the health care professionals who treat patients on the reality of the disease and the best way to mix a successful medicine and lifestyle cocktail. MJFF doesn't do that - yet. I am holding out hope, yet know they can't do everything. In the meantime, patients are on our own figuring out how to get by. Last week my neuro told me it was not wrong for me to under-medicate in order to avoid dyskinesia - after I told him that is what I'm doing - but he, nor any other neuro would ever have recommended that to me up front.

Paula - can't agree with you more about that dance research stuff ....

Exactly. Please let's all agree that dancing and tai chi and yoga and cycling and all types of exercise help pwp. No more money spent on exercise studies. And oh by the way -- Give all research money to MJFF - they target research best.

And change the focus of the other PD orgs to help PWP live better today. Build multiple Neuro Wellness exercise centers in our local communities in every state.

Jean

Indigo, have to agree with you, for my money the PPMI study and 23&me are the most important stuff going on, without what they are finding out, bar a lucky break, it will be quite a few years before they really get to grips with anything. And Jean, we need Neuro wellness resources around the world....

On the other hand, Prosavin is being trialled here in people..... who knows.

But how long before atypicals like many of us will ever get near promising treatments?

Lindy - we might never see a promising treatment. That's why we need to do so much more work with learning to be as mobile as possible for as long as possible on the stuff we have right now. I don't think anyone really has the answer; the research world is not used to young people getting PD and then living for decades. We're all writing the book!!

The research languished for decades; it's all about timing. We just happen to be the generation that got the ball rolling again; it's too early to know if we will reap the therapeutic rewards!

I've been thinking that perhaps soon there will be widespread gene studies of our community, plus surveys of our experiences as Pwp with huge data mining, some original thinking and maybe a little luck. Together it will yield research, (dare I think cure?) beyond our imagination.

Guess this thread caught me in an unusually positive moment.

--katherine

My 2 cents...This is and has become a business

I take Stalevo cuz it's the only drug that works, then Amantadine for dyskinesia, Neurontin, Wellbutrin, and Valium for depression and anxiety, a prostate drug cuz when Im dyskinetic, I cant pass a drop if I've got a bladder full, Ambien for sleep, Vitamin D, Calcium,and Fish Oil because of a pd related Vitamin D defciency, ( which after 2 years they havent got under control )..and the list grows longer as time passes


And as the list grows pharma gets richer, and I get poorer..Being that pd is a long term disease, for which there is no cure...we are pharma's best dream come true..So far the only people that Ive seen benefit from all the money..( with the exception of MJFF )..that has been thrown at pd are the people who work for these organizations, and the people who do the research that amounts to lots of smoke, but no fire..So close, yet so far away

DBS?..I have no desire to roll the dice on that one............yet

Dance therapy?..I dont even want to get going on that one..I just think I'll just waltz my way into the grocery store and do my shopping....Are they serious???



Disclaimer

The opinions of stevem53 are soley his cynical views, and not necessarily affiliated with Neurotalk in and way, shape, or form

......those cynical views are getting harder to hide. Being negative wasn't acceptable. If we are being unreasonable, I would try to be more positive, but we are just telling it like it is.

If the health care act really does go fully though, the ones with mega problems like multiple spine problems (me) or older men they would like to say are too old to be treated for metatasic prostate cancer (my husband before I gave them a piece of my mind and they redecided to treat him) just won't be able to get that kind of care, no matter how much money they have or don't have.

The young healthy and able to go into the work force will have first priority. The kiss second. (hopefully they will be able to go into the workforce at sometime.) The seniors won't be so lucky. The really ill ones come to the US or elsewhere for healthcare.

I have friends in Canada and England and they tell me they are assigned to groups. If you move they assign you to a different group. You wait until they have time to get to you.

I pray I am wrong or that the health care is just better, but I am not holding my breath.

Malinda