i think i'm going to try curcumin, but other than that, i don't have the money to go out and try all this stuff. Rick have you considered a real database to collect information about alternative meds? it could help
If you are not interested, maybe it's an option for a database builder, retired, with parkinson, who can build us a bonafide database. Isn't a pd alternative treatment database overdue or is there one i don't know about?

We could follow the meds and treatments like we do the current pipeline. People can't remember everything that is said about non-traditional meds from reading our posts and narratives. That would be unique and innovative! or is patients like me already doing it?

Rick, you have learned a lot and know plenty about the illness. But you try many things and have certain reactions that i don't remember by the following day. How about a permanent record for pd alternative "trials". ok now it's flowing......we could set them up with placebos and everything.

why not devise our own cflinical trials? i can think of ten trials right off the top of my head that we could try with enough people but also gather enough data to compare traditional with alternatives. We could enter data ourselves into the database. IT would need to be checked before publishing but we could talk about it all along in a blog about that trial.

we could dismiss unfounded claims and who knows what we can discover. Perhaps dispel some myths like for all people sinemet causes dyskinesia when it's the agonists with sinemet that do it for me. We have to just get enough med to do it. patient conducted research - is it legal? can we do it if supervised by a neurologist and and an IRB from the pd community?

i think we may have a neurologist who might be interested and we nave a pd researcher [girija], an attorney, [kath-gdnf trials were like a Grisham novel ] , an accountant [pam]to manage our financial affairs and last but not least....a book to sell to get some of the money. we could donate all the proceeds to our own research. One of our goals is to have the book on medical students and psychologists reading lists. being sold in college book stores.We can still shape the ending and hopefully not miss a beat, continuing 'our story on the website from concepts and passion that arise on this forum.

Soccertease, you don't just believe anything you read, and we need your opinion to balance the easily accepted claims here. The white rats are doing it their way and it's the way of a new generatin of pwp. But at the same time, it could be dangerous for some and others could end up wasting their money on useless substances that they don't know how to use; that's where a database would be a wonderful resource.

well that's a big idea - but one that i won't be shaking my head over in the morning when i read this and say "What was i thinking as i writhe in pain. i am waking up so much better that i don't really even think about my body as much.

i'm back to thinking we must get even more independent. It would be helpful if MJFFwould support these little trials, not with money but for direction in what to research . We've got the know how. They have the scientists to consult and could give us ideas that could help preclinical research get started.

-any people from across the Atlantic interested in this type of information? who can build a database knowing how to make it statistically significant? who wants to do it for the pwp pro bono but we'll come to your house and take you to dinner and even pay for it. lol

think about it. i'm hearing all kinds of drugs are going to become prescription only..like tylenol cough medicine and many others. i hope we cannot let that happen but we better try to find something that works before they make changes.

who knows anything about these new prescription changes? who knows anyone in the alternative community who would be interested? We would have open access to view it, submissions would be reviewed for accuracy. see Parkinson Pipeline DataBase It's an oracle and very comprehensive. i would hope it could be like that one or even an extension of it..

we can do this, we have organized people with very mild parkinson among us and extremely motivated and dedicated members of the neurowriters and pd community. The parkinson creative collective is a highly functional group-ranging from all points on the severity spectrum; but when we say we are going to do it we do. We understand why we have certain behaviors and do not judge them; we solve problems and don't even think about starting problems or solving them thru arguing.

This comes from experience and i needed to learn a lot. I always have one ear on each side of an issue, amd determine which is supported by logic, common sense, compassion, or ego and personal agenda. I"m not going to be arguing with researchers and doctors. The ball is clearly in their court.

And they say we have behavioral issues. Well yeah but we don't steal or cheat or play dirty or put money over people and treat them as troublemakers as a rule. i would challenge whether the outbursts of emotion in here are anywhere near as behaviorally disturbed as a workaholic living for the money and compromising integrity by keeping silent and manipulating, judging and hurting others to get that bottom line.

Lack of information is unacceptable now. maybe this patient written book can start some patient sponsored research.

Thanks for your post Linda H. even tho it's in a different thread it made me think of all this as being possible . Three million seems achievable for a patient org. Or am i dreaming?

no i'm serious
rick, i see you as needing this very thing. Isn't it apparent that clinical trials for pd with alternative meds aren't going to be the first out of the PD pipeline? CoQ10 and creatine are at what point in their research? Ive been reading about them since i came online in 1998 or close to it.

ok toss it into the idea hat; along with the fact that we have multiple forums here and they might be interestsed too, especially MS, Huntingtons, ALS, Alzheimers and peripheral neuropathy/maybe more.


cheers