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Old 02-25-2007, 08:02 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 the "Scientific Method"...

<Heresy Alert!>....is not the only way to gather knowledge nor is it always the best way. And it is particularly in question in the case of a patient with a progressive disease. (I'm not sure how I got started on this but I think it was ol cs reminding me of the whole "no neuroprotection" fiasco.)

So maybe this is a bit off topic, but actually the dex situation is a good one to bring it up. Suppose standard procedure rules and dex has to pass through the whole FDA process. First, no one has much financial incentive to fund research, so even if it was a blippin cure it might never see the light of day. And if some foundation eventually decided to fund it, they would start with a rat. Then they'd need more funding for a primate study. Then more for a Phase 1, etc, etc.

So here is an ancient drug that we've been giving to babies for forty years with good reason to suspect great things about it for PWP. Dosage safety has been stress-tested on the streets at ridiculously high levels with positive results. It's dirt cheap. And still figure on twenty years minimum before you can legally use it for PD.

There's an idea being floated around by one of the advocacy groups that I really like. Compile a database of things with a reasonable expectation of benefit and safety. Then work with patient volunteers who, with the supervision of their own doctors, gingerly test them. Compile the data and let each of us make our own decisions.

Now, that's science. OK, a bit down and dirty, but effective.
End of rant and back to topic. My apologies.
__________________
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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