soccertese,

In an ideal world all research would be professionally run to the highest standards. In an ideal world, there would be well researched answers to everything that we're interested in from grapefruit to ginseng, from coconut oil to forced exercise, from curcumin to milk. In an ideal world, the information would be with us now. Unfortunately, we don't live in an ideal world.

In an ideal world, we would be able to put off making a decision until we had full and accurate information. Unfortunately, we don't live in an ideal world.

When it comes to trying to reduce our symptoms or to slow the rate at which our PD progresses we are forced to make decisions now even though we have limited information.

For instance, I'm interested in curcumin. Do you think I should wait until an "official" trial is completed?

We get anecdotal information from this forum. For which I'm very grateful.

But the gulf between this and "official" information sources is vast. So, the question is: can we do better?

I believe we can in three ways:
- we can aggregate the experiences of people (even two reports are better than one);
- we can measure the effect of an action.
- we can open the data to anyone to mine.

Is this an ideal world solution? No.

Is it a reasonable response to a real world problem? Yes.

On specific points in your post. I'm not proposing that people enter a clinical trial. Rather, I see people doing whatever they normally would do. The only difference is that they report the result of their actions. Of course, people will take different amounts of a supplement, at different times and for different periods. This leads to "dirty" data and the need for data mining.

You mention finger tapping not telling the whole story. You are correct. Are you running my program? In a similar set-up to what I run, Vokear et al. [1] measured "Upper limb motor function" using "the finger tapping test [in which] Subjects had to hit two buttons separated by 30 cm alternately during a 30 second period." They found that in the off state this alone explains 58% of the variance in UPDRS III scores.

Again it comes down to whether to wait for an ideal world solution or to proceed pragmatically.

I do hope you send us your data.

Reference

[1] "Effects of levodopa on upper limb mobility and gait in Parkinson’s disease"
M Vokaer, N Abou Azar, D Zegers de Beyl
J Neurol Neurosurg Psychiatry 2003;74:1304–1307
http://www.ncbi.nlm.nih.gov/pmc/arti...v074p01304.pdf

John