Organizations waste money and spend it on themselves, their researchers, their always very basic symposiums and webinars. But nothing is coming out of the pipeline with millions and millions of dollars wasted.There is a generation of us who know all that stuff. Let's get into some serious information collecting.

Clearly there must be change. So why not anaylze all pwp who desire to - their entire genome? Between the NIH, google, 23andme, MJFF, kinetics, PDF this could be a good way to spend money instead of on mice, lab rats and fruit flies. Wouldn't all our genes thrown into a database identify much about everyone? wouldn't that be worth 100 million dollars instead of yet another 15 yr study that yields nothing?


in the meantime researchers could work on small molecules and delivery systems. It's time to spend the money on the real target for information.

we've been patient long enough - pun intended.

Don't bite the hand that feeds you. lol Let's be fair and say "Some" organizations waste money. There are a few whom I would even call frugal by the moderate number of staff employed and modest salaries they pay their administration. But the way to REALLY find the selfish orgs is to look at how much reserve they are sitting on. Don't leave that huge reserve when we're struggling out here trying to find a cure!

This is not new thinking, and not much we can do about it anyway. (Feeling a bit defeated tonight - sigh)
Peg

Paula - frustrating as it may be, I think the research is proceeding as fast as it can - that at this point, it is not a matter of throwing more money at it (a lot is being thrown), nor a matter of it not being thrown in the right direction. It's just really complicated - something patients have known for a long time. I really believe we are all on the same wavelength right now. It does require even more patience on our part.

they are doing their jobs. but it's not enough for us. we are running out of time. the orgs seem to be designed to educate and inform newcomers. they are also now concentrating on clinical trials., but it took some of them awhile. i'm just suggesting one procedure that could identify everything but costs thousands of dollars per person. i think this money is spent unproductively in other ways. i'm not biting, i'm trying to share ideas. Better bang for their buck.

instead of recruiting, just test genomes. that news would spread like wildfire if it were free or for a donation.

could all of our genes identify types, everyone with a certain characteristic don't get pd. everyone with another mutation always gets it. the information would be endless and the millions would be well spent.

the status quo is not working. they are plodding thru these trials with funding and not sharing the results and getting refunded. yes they would need to spend money on us. and they probably would be able to change the illness. it's on the inside of us. thats' where they need to be. while we are alive.

i get confused about how to deal with orgs. i have wanted them to work with us for years; but i want to produce something that changes the disease. so let's learn how we are the same inside and out. if it's a good idea. i wish some people like debi or robin or even michael would seriously discuss this here. let us know you hear us.

if this bites a hand, that hand doesn't understand. there i finished with a rhyme.


paula

Paula

You know how I am symptomatically, as I do you. We do have to make some noise or we will be left behind! I have had this stuff 18 years - had experimental brain surgery - talked about clinical trials all over the place, and been told "Five more years to a cure" for at least 15 years!

What worries me is what will happen to research funding if health care is completely overhauled? I'm not talking anything political here. I mean health care cannot possibly go like it has been for the last 4-5 years. NIH has actually been receiving MORE funding for research, but with the economy like it is, the costs are higher and we have to compete.

There - I said it "we have to compete" for the dollars. Tell me if you don't agree. Because money is so tight, the blockbuster drugs and therapies are what gets the button pushed for reward. PD has been on the back burner for 40 years because dopamine replacement works so well. Well, that's a lie! The side effects from long-term therapy is worse than the disease in my opinion! I am so dyskinetic and have so much pain, and anxiety and insomnia. Did I say crazy, too? Well, that's where I am headed. My quality o f life (QOL) will start declining at a major fast speed as I enter the 60's. (shiver!)

We have to professionally make sponsors and big pharma, and researchers know how much we suffer - how they can make mega bucks when the 80 million baby boomers hit the market. Dopamine ala carte won't get it!

Jeez, I am rambling! And my typing is going fast. Talk to me readers! What can we put our heads together and do? Yes, we need trial participants, and Fox and PDF and others are working so well with us and us with them to spread the word. But where will the incentive come for new trials?

Did anybody see the Early Morning CBS News today (Friday the 13th)?

http://www.cbsnews.com/video/watch/?...ag=mncol;lst;1

I hope that link works. It's a British study singing the praises of gene therapy. Watch it and tell me how long will it be before our FDA approves it? Will iti be like Duodopa? Been used in Europe for nearly a decade and it's still not approved in the US!
EEK! Paula, you opened the flooding dike! I'll stop now and you talk to me forumites.
Peg (holdiingn on but fading fast)

Bandido Bob has been on almost every skype call f0r 3 yrs as we wrote the book, most of it from a nursing home. he repeatly had infections and pd [from lack of movment]killed him and he didn't live to see it published.

that's where we are all headed if we don't do something that gets information straight from the source - real pd not artificial , nor animal.

too off now i'm done,

Paula,
I woke this morning with some of your questions, and a few more. Last night practically the last thing I did before bed was read Bob Dawsons post, and I had this vision of the karma that science is building up with the 88 million mice and the other creatures too, and how we are there, millions of us, and we have been saying come and take a harder look at us, we too are in your laboratory, but is anyone paying attention. It is not that the orgs and the researchers are not working hard, or even that their motivation is wrong. I sometimes feel they are just asking the wrong questions. Or looking through the wrong lens. Or something. Or that science itself is maybe incapable of looking at itself objectively anymore. How much is good science and how much is bad science? This isn't personal, it's not saying one group are not doing things right or pointing a finger. It is asking a real question, one that is appropriate for our times.

I am forever trying to get a grip on the idea of 'de novo' as a paradigm for trials. Yesterday we got news of yet another person diagnosed with PD and moved onto a DRD diagnosis, who has been moved back to a PD diagnosis as their condition worsened! Just from this one event, I have so many questions.
Because I suppose even the very best people do not always seem to know whether what they are seeing IS PD. So who are the people on the trials, how many of them do have PD, what exactly is PD??? And this is not to knock the trials or the people who participate in them.

There is the PD we experience, and the PD the doctors know of, and the PD that researchers can see in our brains, and the PD that pharmas try to treat, the PD that is presented to the public by the orgs.

But are we all even talking about the same thing?

And then there is 23&me that because it is a very different kind of animal, not working on the same basis, it has bypassed the old view of biological science and has come up with all these new connections. From data, just data.

I sometimes feel a bit like a 'reclaim the streets' protester. I want to reclaim my brain, and say regardless of what you think my brain is doing, your picture and mine are very different..... I want them all to stop what they are doing, for a brief time and take a real look at us.

When I feel like this the only single group that I feel are really progressing with finding out what this is about are 23&me, and they are doing that because they are not pre-supposing anything, they are sifting data.

I should really do that spit kit thing.......

There are different ways of viewing the world. (You may have noticed ) Science has, for several centuries, used a "linear" model of "If A, then B" which has worked remarkably well but which is coming up against limitations every where we turn. The linear model is a grossly simplified way of looking at the Universe that filters out pesky details to keep them from overwhelming us. The alternative is a "non-linear" or chaotic model of "A = B, unless it is Tuesday" which immediately moves beyond our understanding.

Unfortunately for us, PD is firmly placed in that chaotic world of feedback loops and cascades for the simple reason that it wont fit the linear view. Heck, even writing about it fails. Look how linear this written page is! We need gestures and facial expressions and tears and laughter to really talk about it - some things that both PWP and neurology famously lack. Thank god for emoticons .

The only way to grasp a chaotic universe is by means of massive collections of data points that eventually form a picture that allows us to "grok" it as a whole. Sort of like 23andme is doing. The only shortcut that I can see is largely trial and error. Sort of like we PWP are doing. If only we could merge the two.....

Sad to say but you know it and I know it. We haven't cured anything since polio. If it was ED we were talking about we would have a choice of drugs-oh yeah, they do, see that wasn't hard (no pun intended). Even if the Prosavin takes off, we have the FDA to protect us from any real progress at least for another 15-20 yrs! I hang in there and simply am tuned in to hear the chatter, I don't expect anything to change it, certainly don't think we will ever have a cure, we'll be reading about this stuff from some other country, just like duodopa. And that one has been fast tracked since 2002! Give me a break. It is too regulated, too much money is involved and too much capitalism. These countries that get this stuff going have socialized medicine. It is to their advantage to heal people and return them to productive members of society. There is no incentive in the U.S.

I have been wanting to start a thread at very least, but more a blog to tell the world how it really is, yet I am afraid of people thinking I am either on a l-dopa fueled hypomanic rant or that I am some crazy person in denial. Truth is PWP who are newly diagnosed do not want to hear the truth. This is in fact the only PD based grounded in reality We talk of awareness but we bypass the fact that many of our peers; most in fact, put all their faith in a cure when the reality is we are still being sold snake oil, only it is the peddler is now the establishment; those very people who are supposed to have our own best interest at heart; well guess again. Our reality is that we are most likely screwed unless we band together and start squeaking our wheel- they put us on the wheel and we keep it in motion. No offense, I am not being judgmental because I am just as culpable in this, but I think it needs to be said. We spend way too much time here preaching to the choir. How do we expect anything to ever change for us?

Yes, things move at a snails' pace, but it has very little to do with keeping us safe. Look at all the recalled drugs. No one ever talks about the cover ups by pharma and the FDA- this happens across the board, not just with neuro disease. The FDA regularly colludes with pharma or whoever will keep the power structure in place and money flowing. Science, medicine, and pharma take forever to make progress because they are a system run by our chronic illness; it is not an intentional thing or conspiracy to profit; it just is because it evolved into that and because somewhere along the way (in schooling, I imagine, scientists learned not to take risks) doctors and scientists lost sight that there are real live people waiting on that pipeline.

Scientists make major breakthroughs only when they take risks. The peer review system insists on conformity, so just who is going to be our Atticus Finn, our moral hero, someone who has clout, to stand up for us? These people. once a rarity, scarcely exist today. If we don't start speaking up; not only will we not see anything change, but I would say we will regress unless we step up now. We have already lost control of our health, and the people involved in research, drug approval, medical care etc. all the many players in the game called race for a cure that probably already exists, those people now control our lives, we are merely pawn

Paula is absolutely right. We do not need new research. In fact, as much as I believe in what MJF is doing for us, it is misguided. We need panels of experts there; meta experts, or wherever taking on different theories and identifying say the top three promising treatment options beyond dopa replacement and then seeing it all the way through. It is entirely too passive an approach. People with MS have done this. A wealthy guy came down with MS and researched along with experts the best options for treatment right now for people who already have a diagnosis. What continues to hold us back?? We have plenty of company; PD does not select on basis of income. Why can't we make a case for a think tank for PD that is wiling to take risks? Sergey Brin has started a foundation with his wife; why can't we redirect our energy there and make a case?

To those who scoff at the idea of civil disobedience; I am not suggesting we need to be as in the face of the establishment like Start Up was for AIDs; though they made more strides for that cause than we have seen change in 50 odd years of research, I am saying we could be far more assertive. Many of us shy away, afraid that we will not be taken seriously because we are not medically trained. Somehow because we do not have medical degrees we are less equipped to discuss the scientific literature or question our doctors or we cannot even hint that others should try curcumin. We too are experts; we live with PD, yet we let everyone else define our collective fate.