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Old 12-20-2008, 02:12 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
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<Q>
"My message to all constituent groups is very much the same and fairly simple: please do your best to understand the patient. We don't have the same symptoms; we progress at different rates. Do we have the same disease? The overall failures of recent clinical trials, despite good results among some trial participants (including the placebo effect) suggests the pool is diluted. Even though we have learned a lot about PD over the past 10 years, we face many more to a cure. But we can't cure or even find more effective treatments for PD unless we understand it. And I don't think we can understand it unless researchers listen to patients to learn how PD lives in our bodies."
<Q>

I would add that researchers and physicians (and patients too for that matter) must get away from the view of PD as a one-dimensional neurological problem. Neurological problems don't show up until 80% of the damage is done. There are decades of subterranean erosion before the first tremor during which the immune system and endocrine system and GI system are the arenas. Eventually, so many critical components get worn that we lose our "bounce" - our ability to respond efficiently to our environment.
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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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