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Old 05-01-2007, 02:01 PM
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reverett123 reverett123 is offline
In Remembrance
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
reverett123 reverett123 is offline
In Remembrance
reverett123's Avatar
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
Default Now you are talking!

Some ideas that I have been kicking around but lack the knowledge to implement (maybe DocJohn could help)-

1) A wiki. Similar to Wikipedia but dedicated to PD. It gets kind of vague here, but the general idea is that readers could post addendums or corrections as appropriate and the knowledge base would grow in a self-correcting organic manner.

2) A parallel blogspace for discussion of the wiki. Actually this could be done with dedicated threads in vBulletin.

3) Education of patients. We tend to be pretty intelligent folks but if we are going to be considering things like genetics and the inner workings of mitochondria we need some basic knowledge. Perhaps the wiki could incorporate this by means of a handful of links to unusually good websites. But more than a handful and it kind of fizzles away into ineffectiveness. And a tutorial on how to use Medline would be goood too.

4) Education of scientists and doctors. After number 3, who better to observe PD than us? By then we could speak their language.

5) The quickest route to a cure is to find the cause(s). Examination of the various possibilities and how they might interact might lead to something.

One thing that keeps me plugging is to remind myself that we are a unique PD "generation". We are the first to: know that the brain can be repaired; have access to the Net and thus communicate with others to compare notes; and have access to Medline and similar resources.

The sheer volume of the data that has been collected and the flood of new stuff every day makes it impossible for anyone - especially if they are already busy with patients or a project- to ever hope to keep up to date. A group with time on their hands have a better chance if they know what they are doing.

We aren't scientists (apologies to those who are) but there is a certain backhanded advantage in that. Scientists are specialists. That has power but it also is a weakness. If a neurologist and an endocrinologist and an immunologist never see what the other is doing and aren't able to understand it when they do, there's a good chance that things are going to be overlooked

We are generalists. We don't know a lot about one thing but we do know a little about a lot of things. The advantage is that we might spot patterns that a specialist would not. So the day might come when we looked at the wiki and said "It's obvious that...."

OK, I'm going fishing
__________________
Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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