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Old 01-25-2007, 02:59 PM
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rosebud rosebud is offline
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Join Date: Aug 2006
Location: Great Green Pacific Rainforest
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15 yr Member
rosebud rosebud is offline
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Join Date: Aug 2006
Location: Great Green Pacific Rainforest
Posts: 488
15 yr Member
Default Boy, have you opened a can of worms!!!

My thinking is much along the same lines as Greg's (only I know a whole lot more about why my car starts now I believe in my simplistic way that the reason we all have "Parkinson's" is because in all cases the same area of the brain in damaged, but in different ways. I have a tremor because some sub-system in the same main system as you, has been damaged by whatever, while in your case another sub system of the same main system has incurred another type of damage. I'm not a science head or even much of a researcher, but I've been looking at this picture for ten years and the business of the Label we've each had attached to our disorder is a broad spectrum one within which many subsystems lie (or is it lay?). Not unlike the universe.

I also agree with everything michael says about what is going on around us. A quote from a publication just put out by the local (provincial) Advocacy movement says "The incidence of Parkinson's is increasing at a rapid rate, and more than can be explained by the rate at which the Population is aging" I'm sure this comes from the Pacific Parkinson's Research Centre and I know from speaking with some of the specialists who work there, they are finding the increase in YO particularily alarming.

As layman we don't have the credentials to tell anyone how to go about correcting the percieved flaws in the system. The paradox is we are the "professionals" when it comes to knowing what is going on every minute of every day in our own lives. What it MEANS to live with PD. But we lack the vocabulary or even the voice to make ourselves understood. There is a synaptic gap between the researchers and the subjects of the research. Crossing that gap is one of our biggest obsticles (and great frustrations) for many of us.

I agree with micheal also that we must become our own advocates and researchers and analysts (not his words...but my interpretation) and find the pieces that are missing (rick everett & ron hutton personified) in our own heads. That's why a forum like this is sooooo valuable. It's a place to exchange information and ideas and whatever else anyone wants to throw in the stew. When BT went down last summer I felt like I lost my right arm. I was suddenly out there by myself. We lost some valuable voices and have not fully recovered from that hit.

Personally I don't expect a cure in my lifetime (another 20 years...God help me). I do think I can maintain a somewhat precarious balance by drawing on the best minds I can find (and some of them are here) and constantly monitoring what my body is doing, and by being proactive in using what I learn. Having said that -I havn't been on my treadmill for months.

In closing, Greg's comments reminded me of a quote from somewhere ... "marching in formation has nothing to do with going in the right direction!" May the Force be with us JW
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