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In Remembrance
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...for neurology support ala BT? This is a semi-academic question but a few of us are considering what might be and would like to have input. Some thoughts to date:
1) It should be looked at as a community property along the lines of a vast library - research complex with rooms for meetings of interest groups both public and private. 2) It should provide space for researchers of all levels to collaborate and publish their works. 3) It should provide reference material for both member and researcher. Flowery words but translated into the real world: At the home page you are in the virtual lobby. You can choose a "Newby orientation area" or you can enter the somewhat raucous atmosphere of the public forum (that would be here). But you also have the quieter areas where serious people gather. Some of them you can join in, others you just observe, some are closed completely. Occasionly someone emerges from these areas with a manuscript and heads for the printing department and adds it to the archives for all to read. The archives contain not only the works of the few but also the record of the raucous conversations in the forums, the newsfeeds of the press, the collected papers and case reports of researchers now gone, and anything else we can think of. There are rooms where the elder statesmen and women gather to engage in cross-disciplinary discussion. What can an engineer with Parkinson's and an MD with ALS and a school teacher with migraines find to talk about? No one knows because it has never happened. But put the right people in the right setting.... Anyway, suggestions are welcomed.
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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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