[johnt]

We have many examples in this forum where someone starts a thread saying that eating or drinking some food has helped their Parkinson's. Or that some exercise has been useful. Or we have a theory which could very simply be tested. This is great, but what do we do next?

What tends to happen now is that a thread is raised, people write in saying they've had similar experiences. After a few days the thread goes off the front page and there's no more posts. A year later a similar thread is raised and we start again. Each time this happens we lose information. Moreover, we rarely have data on the magnitude of the effect, its statistical significance or whether or not it is a placebo effect.

I think we could address some of these issues by running our own trials. As a first step let's agree on a protocol.

Scope
I'm talking about simple food or exercise changes, NOT DIY DBS.

Proposal
Someone starts a thread describing a clear test proposal. This should explain what participants need to do and what measurements will be made. Time should be allowed for comments and warnings before starting. It may be that the proposal is revised or even cancelled.

Test participants responsibility
Anyone taking part does it voluntarily and takes responsibility if something goes wrong for them. Participants will report their results back to the thread. Participants are free to leave at any time.

Measurement
Rick in a previous post suggested a typing test. The best I can find is:
http://www.powertyping.com/practice/practice.html
This allows you to set the content of the test and forces you to correct mistakes. Typing "zp" 20 times using just your most affected hand would be suitable. The one downside is that results are reported as integral words per minute, thus losing resolution.

Control
The participants will measure their performance before beginning the test.

Blind testing and placebo control
Some tests will allow self administered blind testing. For instance, where a liquid is relatively insipid, two samples could be made: the first with it added to something strong tasting; the second with just the strong tasting liquid. These are placed in almost identical containers. Each container has a unique code which is visible when it is filled but not when it's used, but can be viewed by close inspection before reporting the results. For example, almost identical very long codes could be written on the base of an opaque container.

Statistical analysis
The thread would contain a series of posts containing results. These would be open to anyone to report on.

I'd be very grateful for any comments.

John

[girija]

John,
Excellent suggestion. There is so much useful information buried in the archives of BrainTalk and NeuroTalk. Documenting all that info in a "scientific" manner would be great. I like your idea of conducting our own clinical trials very much. We can start with harmless compounds such as turmeric as a supplement and Ron and others who have been using it for years may be able to guide us with experimental details (how much/how often/what form/where to buy etc.,).

I have not been around much lately, but will be back posting on Neurotalk soon. I am ready for clinical studies....

Thanks
Girija

[paula_w]

Do you know the guy from the UK who writes databases- oh i am so bad at remembering names but he was at the world pd congress. i'll get you the name. when we came home from the congress in oct. he was ready to write his own database about treatments. we tried to get a group going - RLSmi was interested and another gal from London. i realize you need names lol....then we discovered that we were talking about two different databases. would you happen to know who i mean?

we have to have a database to use for any of the trials. i'll get back with names soon. this is something many of us have wanted to do for quite some time, but it's not easy to get a free database.

[lindylanka]

Paula, The name was graham, he was there with swept..... there are also new web based ways of collecting data.need to do some research (don't we always!)

[reverett123]

on several fronts. Not only the chance that we will turn something up. There is also the opportunity to highlight treatments that have been blocked for one reason or another (mucuna, for example) and at some point, a dandy opportunity to educate the media ("Patients take research into own hands.....")

In addition to the typing test you mentioned, another that I suggest is the amount of time one can stand on one foot and repeat on the other foot as well. This gives a snapshot of not only the sense of balance, but also the muscle strength. Work in some sort of hopping rom foot to foot - hopscotch maybe? - and you have a very efficient measure of several variables requiring no equipment.

[Ronhutton]

If all and sundry were able to add or alter information on the data base, it would soon get out of control. Could I suggest we vote in a small group who control data entry, say 6 members and submissions for entry are made to this goup, who then decide whether to enter it and in what form. Then facecious or mirracle claims etc will be weeded out, and all entries would be in standard form.
Ron

[Conductor71]

Originally Posted by reverett123

on several fronts. Not only the chance that we will turn something up. There is also the opportunity to highlight treatments that have been blocked for one reason or another (mucuna, for example) and at some point, a dandy opportunity to educate the media ("Patients take research into own hands.....")

I was just thinking about why I keep trying different anti-inflammatories and never seem to stick with one. An e trials and database would be a great way to aggregate treatment categories like this with benefits and include things that are important to us like cost. Then we could look and make a decision based on what might give us the most bang for our buck

Also would like to enter some demographic data and see how many of us show any environmental exposure similarities.

Thanks Johnt for your persistence. As Paula mentioned, this is not a first for us but it is the first time we all seem to be feeling "enough" we are fed up with researchers chasing their tales.

[johnt]

Thank you for your replies.

One of the nice things about this forum is that people report on what works for them. We know that all the ideas can't all work for all of us (for, if they did, we'd be the healthiest group of people in the world). Yet we still value the posts: partly because they give us hope; partly because they give us ideas; partly because some work for us (thanks Aunt Bean you've got me growing fava beans); but mainly because we get a sense of community - people in a similar situation to ourselves responding in a similar way. Whatever we do we don't want to lose this.

I write "responding in a similar way". As I see it the core features of this are that we don' t believe that big-Pharma and "big-Health care" have all the answers; that we do believe that individually we can make a difference for ourselves and others; and that "sort of" working together through the interplay of forum threads and posts we can do better. Again, whatever we do we don't want to lose this.

What's this got to do with this thread? Well, I want us to keep what we've got, but add to it in an organic manner. So, I don't, at this stage, buy into the use of a database. Let us start by sticking to what we understand and have democratic access to, threads and posts.

We can always revisit the issue if numbers get too large (I'm expecting only about 10 responses per trial) or we find the system is abused.

John

[lindylanka]

See your point JohnT, stick with the possible and the experiential.......

[johnt]

I think the best way forward now is to try something easy, as much to do with what we can learn about running trials as with the subject itself. A trial trial! I'll post soon.

Now is probably the time to think about what trials we could run. Ideas?

John