Parkinson's Disease Tulip


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Old 12-23-2008, 08:58 PM #1
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Default Why two centuries of research and still no rubber duckie

...or similar prize.

The research community is going to have to take a different view of PD if progress is to be made. They are locked into a mindset that looks at PD in a way that paid off for things like polio and such - find cause, find magic bullet.

But PD is part of a class of problems that remain now that the one bug, one drug class has been pretty much eliminated. And, just in case we do still have a secret audience, I'd like to suggest a new model for their consideration - the automobile paradigm.

An auto is produced, rolls out of the factory into the arms of its excited owners, carries the family along for many years, goes to many new places, is passed along to new owners, begins to show wear and tear, gets older, gradually wears out, and finally passes the point where repair is possible and so goes to the Big Junkyard in the Sky.

That's the normal process of life, aging, and death. But some cars have a harder time of it. We even insult them with the name "lemons". Through no fault of their own, they came out of the factory a little different. They passed the inspections. They looked good. They ran well for years. But far too early things began to go wrong.

So let's take a minute to look at the life of one of those automobiles in a little more detail. It passed along the assembly line over a period of several days as various workers assembled various systems.

On Monday, a fellow with a little hangover installed the electronics. Modern automobiles have a system of sensors and black boxes that is a wonder to behold. Instead of "a computer" there are dozens of them, some tiny and some not. Sensors detect a temperature increase that shouldn't be there and tells a black box that turns on a fan that cools things down that the sensor reports. That is a feedback loop, it is incredibly powerful, and our body is full of them. But they are in the endocrine system so most neuro scientists are not familiar with them.

On Tuesday, a fellow who had been passed over for a promotion left out some filters in the fuel pathways. As a result, impurities went straight from the gas tank into the engine. At first there was no obvious problem but gunk began to build up in the fuel injectors. A sensor picked up the problem but its black box couldn't quite correct for it. A low-level, chronic exposure to damaging substances from outside is present in the PD brain as our immune systems respond by activating the microglial defenders. Most neuros lack familiarity with the immune system.

So the seemingly perfect automobile rolls out into the arms of the proud owner. The first years go well, but damage is taking place, not only from fuel contaminants, but from general wear and tear that the sensor/black box network can handle with limited efficiency. Other factors come into play - low quality gasoline, a trip across the country, a missed oil change... Several autos were turned out that week with those defective systems and each has its own history. The ones that were driven hard were the first to start developing serious problems as the misfiring fuel injector system began to be detected as the first faint vibrations of the steering wheel.

The small town mechanics who looked at the problem felt that it was the front end shaking. Maybe a wheel out of balance. They didn't know about the black boxes or the missing filter inside the fuel tank.

And so it went until it could go no more.
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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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Old 12-23-2008, 11:48 PM #2
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Default from planton of pipeliners

There Is No Parkinson Disease

William J. Weiner, MD

Arch Neurol. 2008;65(6):705-708.

The term Parkinson disease defines a specific clinical condition characterized by a typical history and characteristic signs. This review examines the historical evolution of the concept of Parkinson disease and how the misunderstanding of Parkinson disease may be hindering clinical research trials.

It is proposed that this syndrome be called Parkinson diseases or parkinsonism type 1 through infinity.
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Old 12-24-2008, 09:11 AM #3
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Default

Both make good points.

Parkinson's needs to be seen as Types, not as a global disease. My PD is not the same as Paula's or Peggy's or Jaye's. I already know I am of the tremor dominate subset, but just what does that mean and how does it truly make me different from the those with sever dystonia, for example.

It is time for research to be "broken" into these subsets. And at the same time for clinical trial results to be reviewed not as global results, but as subsets. Why have I done so WELL with my CERE-120 trial, while others have not responded well or at all to the therapy. My results should not be dumped into the same bucket with all the other 61 patients, but reviewed with eagerness by the researchers.

Should not Phase III move forward, but not with just any patient who cares to join, but picking and choosing patients according to the actual results of Phase II. Do the research on patients who would be the best candidates for Phase III.

I hope this makes sense what I am trying to say.
Carolyn
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I long to accomplish a great and noble tasks, but it is my chief duty to accomplish humble tasks as though they were great and noble. The world is moved along, not only by the mighty shoves of its heroes, but also by the aggregate of the tiny pushes of each honest worker. ~~Helen Keller
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Old 12-24-2008, 11:58 AM #4
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Default Great idea, how to present it to those that make the decisions?

This is a fabulous idea! Why in the world do they not already do this in clinical trials? They screen the heck out of folks wanting to get DBS, probably turning more away than they accept for this procedure...they have so MUCH information about every clinical trial participant that this would be fairly easy to match positive responses to the trial with symptoms and manifestations...of course that placebo factor could be a tad complicating, but surely they could account for that somehow. Patientslikeme.com has a fairly comprehensive grid of symptoms they could easily take and expand on, and then review each candidates medical records (which they probably do already) to find subsets of PD best suited to this procedure/drug or that.

I have no idea how or who or where one would go to present this idea, but given that spheramine and ceregene both got nixed this year, and we KNOW sole people were really helped by these, the time seems so perfect. Why shelve those therapies when they did help some people? They should know by now that there is not going to be a "one pill fits all" with PD, different people will respond better to different things. Hey, kind of like we already have now with the myriad of statins, anti-depressants, blood-pressure, etc. medications on the marktet. Why should PD be any different?
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Old 12-26-2008, 09:07 AM #5
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Default rick, et al

please refer to my yesterday's post -- now w/ an easy link - entitled "excerpt' for some insight into this 'situation'..........
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