I was absent the day they taught science in high school, so I can't address the science of it. Even the whole thing of the double blind, triple deaf, quadruple mute "clinical trial" makes no sense to me; not to mention the sham surgery. They take the person out of the person, and then test the zombie that is left over.
When I fall off my Parkie-horse, I do not first grab the pillbox and call the neuro, I first crawl to the likes of Reverette123 and Aunt Bean for the tech-specs of what I am ingesting blindly and Ginnie changes my soundtrack to "Dislocated Boy" and I read this site to stop feeling sorry for myself and I try to attach my brain to something that looks good, feels good, and is attainable for me; and I get that kind of advice from this tribe where there are people who have tried just about everything. I do not measure anything except number of hours On and number of hours Off and the intensity of both.
So white rats on this site have always provided me with information I do not get anywhere else, and I validate by myself whether or not what worked for others works for me. But I don't do finger tapping (although I could if anyone wanted). I judge for myself the level of incapacity in the past hour compared to the hour before that. It is partly or mostly "subjective" and I know that science does not do "subjective" but I am subjective pretty much all the time, on account of it being me and all.

So I support the White Rat Self Experiments because they capture lots of information of value, as actual end-users in real life.
It would also be a case of "the medium is the message". The medical world will not notice the content of the self-experiments as much as the fact that rogue Parkies are frustrated enough to experiment on themselves.
All of this has already been going on. The changes being proposed are to get some formatting and analysis and commentary accumulated in one place. Too many good suggestions are getting lost in the tsunami of information that the internet brings us.
I hope lots of scientists get to be doubly as blind; but a couple of years ago I could not find a single thing to hang on to, I phoned Rick down in Tennessee and he told me 3 things to do and I did them and went to sleep and got up the next morning and cut down a maple tree.
There was nothing double blind about it, but I crawled out of my swamp and was functional again. And that day I chopped up all my pills and took lower doses more often, and I ingested a small portion of Rick's magic potions, which are already included in his internet signature on this site, and Rick has been evolving that list for years.
There are more Rick's out there that we have not heard from.
It is already happening; it needs some formalization and communication. I support the citizen scientists medium-is-the-message self-evaluation and kitchen-friendly self-medication and spiritual self-realization.
My sound system is on "Shuffle" whereby it plays songs in random order; it just now started playing "Last Matador of Bayonne".
Parkies are the matadors and Parkinson's is the bull. We face it straight on, fearlessly; step elegantly aside when it charges at us with its horns down, and we wait for the moment to kill the Beast.

This is a growing area of interest throughout drug development. NIH recently launched a significant effort across all diseases.

MJFF has been funding "repositioned" compounds for several years in preclinical and clinical stages of research -- so much so that we decided to launch a specific program (and draw more attention to it within the PD field) a few years ago and have renewed it again in 2013. You can find more information here. https://www.michaeljfox.org/foundati...254&category=4

Debi

Across a number of threads, we've discussed and we've argued about data collection. It seems to me that the time has come to either do it or to move on to something else. Ultimately the best evidence is seeing something in action. As mentioned before, I've written an integrated set of programs, PDMeasure, that allows us to enter data, do tests and see the statistics.

I propose we start by checking whether PDMeasure is fit for purpose.

If you want to take part go to:
http://www.parkinsonsmeasurement.org/PDMeasure

If you've not already done so, you will need to register. Registering involves providing a user name, preferably not your NT ID, and password. This allows the data to be stored anonymously, but makes it possible to aggregate a person's entries.

If you have registered already (13 people have), please make sure you have done both surveys (only 4 people have).

For the next week I propose that we do the test at least daily. This will allow us to see if the measurement tool give useful results.

PLEASE NOTE
1. all data is visible to everyone.
2. healthy people and PwP can enter data.
3. The data can be seen at:
http://www.parkinsonsmeasurement.org.../writeData.php
4. A simple statistical analysis can be seen at:
http://www.parkinsonsmeasurement.org...Statistics.php
5. Bob Dawson makes a good point that he records hours "on". Data such as this can be input in the extra information field of Test 1.

John

This thread has made good reading. Especially where people point out what is not known about the condition "commonly known as PD". My only addition to the various opinions on this subject is that I fail to see how there can be progress without patients being viewed as 'whole people', that is not just as neuro-defective in some way.

To illustrate how observation can go missed even between doctors and their peers, I cite my own personal experience of being treated with an anti-cholinergic medication by a urologist. This well-repected specialist was not surprised when I said that the said medication had a positive effect on my pd symptoms, especially mobility; he had observed this in other patients over years. This information did not go down well with my neurologist, who brushed it aside. Yet over the years I have discontinued and re-started this medication several times, mainly because of visual and oral side-effects, and each time on returning have been able to make the same observation.

If such things are so hard to share between disciplines, it seems an uphill battle for the citizen scientist, patient or impatient! Yet we have a condition that affected us in a multi-systemic way. I would ask where are the MDS who really understand this and communicate with other specialisms. A question I believe I was asking at least 5 years ago. At least if patients were able to say I use 'x' because it helps, it would provide some kind of statistic that showed what was helping, rather than stabbing in the dark to impose a set of drugs that may or may not be of use at all. We have the means to collect that kind of data, raw though it might be. Orthodox or not, it is still relevant.