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Old 07-23-2009, 07:47 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 A good time to ask....

How can this time element be shortened, perhaps drastically? For now, let's say that "it cannot" is not allowed as an answer. One obvious way is to compromise on safety. Another is to increase funding. Would a distributed approach do anything? Lots and lots on mini-studies? Or is that a step in the opposite direction?

OK, here is one that might really work. Design studies in such a way that if I, for example, like the sound of it, I can sign up as an individual to test the miracle drug of the day in collaboration with my MD. The central research team prepares a packet outlining the elixir, procedure, data to be collected, etc. As the info comes in my GP or neuro or whatever uploads to the team website. Results are in real time and procedures can be modified on the fly. Costs are minimized.

From the selfish point we occupy, it seems that a sense of urgency needs to rule and the scientific method may have to be bent a little. We need to color outside the lines. And face it, patients are experimenting away all over the place. But it is uncoordinated and largely wasted and more than a little dangerous. There has to be a better way than what has been the norm since Newton et al. We've got the Net for gosh sakes. Are we using it to the max? Not even close.
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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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