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Old 01-25-2007, 04:46 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 Well you all KNOW I've gotta chime in on this one!


But where to begin? As I posted elsewhere, the way things are done is not necessarily the best way for us. I think it is time to question everything.

Let's start with PD itself. What makes us think there is a cause? I know that sounds absurd, but what if there are a dozen ways to get PD? Or more precisely, a dozen things that if you encounter any three in life you have a fifty-fifty chance of getting it. Run into four of them and it goes up to 75%. Any four. How does that alter the picture? Or what if you must ave either cause "A" or "B" but can have any two of the other ten? Would that explain why we are all different yet the same?

I'm not making that up myself. Researchers are considering it and have called it the "Many Hits" explanation.

And what about the actual disease? Dead cells in the substantia nigra causes a shortage of dopamine that makes it hard to move? Hah! That's a crock! There is damage throughout our entire nervous system and the SN is one of the LAST places it shows up. Using the definitive marker of PD, the Lewy body, a German scientist named Braack has shown that PD starts in the stomach and nose and creeps slowly through the nervous system over the years until it ends up at the SN! Virus? Toxin? Autoimmunity? All the above? Yet the Big Boys are fascinated by the SN and that's where all the research money goes. What flippin' good are stem cells going to do if something is waiting there to kill them off?

Cures and treatments? They're looking for a Magic Bullet to take out the swarm of hornets! Locked into the single cause mindset, all they can envision is a single cure. What if the way back to health requires something more? Maybe a lifestyle built around looking out for ourselves, hell, loving ourselves? That seems absurd too. Until you start looking at the endocrine system's role in all this. Talk about an Alice-in-Wonderland.... Maybe the health food nuts (like me, sometimes) are right. Maybe the whole thing is so complex that the cure is to empower the body's own repair systems. Ever hear of an adaptogen? It is a class of herbs that do just that. Been used in India and China for centuries.

And who says that the vaunted Scientific Method is the best approach here. Slow? Yes. Sure? Wellll... Try a little thought experiment based on the fact that we now have the Internet. Say a thousand Parkies joined forces via a forum like this one. First step, they all wade through a series of Power Point peresentations that gives them a basic education in neurology, immunology, endocrinology, anatomy, etc. to add to what they already know (who says engineering is irrelevant?). Teach them how to mine the databases of the world via their keyboards. One of sciences problems is specialization. Neurologists and immunologists seldom talk. The result is that a complicated condition like PD that overlaps the sides of the various professional boxes suffers. But the Parkies would be Generalists and would be ignoring the boxes in searchn of the patterns the pros never see.

Suppose these citizen-scientists comb through the knowledge base and identify the ten most likely things. A tousand people look through and come up with their ten. Compile the numbers and make a list. Divide up into a hundred teams of ten each. Ten teams to a unit. Each unit takes one item off the list and the lead team of that unit cautiously tries it and reports back on any dangers or positive effects. Standardize the testing for monitoring changes in function in the first phase (therapies) and work on cures in the second. If it looks promising additional teams try it too. In thirty days you have a pretty good idea on therapeutic value for the ten most likely herbs, spices, exercices, etc. In a year you have covered the top 100. Then you can switch part of the team into longterm trials of the top ten and so on.

Risky? You bet! But if you think your current regimen isn't you'd better think again. Potential reward? Very high. Don't even think about that one for the current drugs. It will just scare you. Chaotic? Yep. Chaos is not necessarily bad. Especially when time is important. Drop a needle on the floor and you look carefully until you find it. However, if you only have thirty seconds to do so you adopt an entirely different strategy.

Opinions? Yes, I have a few....
__________________
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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