We tend to think in a cause and effect manner where disease is concerned. A bacteria makes you sick. Simple, right? Find something that kills the bacteria and you are cured. A-B-C

This is called linear thinking and is effective in many situations. Not necessarily correct, but effective.

But some conditions don't lend themselves to this model and require a non-linear approach. And much of western science has a hard time with this.

PD is one of these.

Instead of a straight line (linear) view, imagine a process where a collection of factors contribute to raise the overall level of. for example, stress in a system until it reaches a certain level and trips a switch. Once that switch is tripped, the things that did not affect you yesterday do so today. A time deadline, for example, that would have been no problem last week is undoable this week.A threshold was crossed and the entire system shifted.

In the world of neuroendocrinology these thresholds are called "set points" and they do indeed shift in response to stressors and they don't easily shift back. Many of us recall a major stress in the months leading up to our first real problems. But those were just the problems that finally became obvious. There were likely a series of such thresholds crossed and barely noticed before that and we are still climbing the next. PD is "progressive," remember?

Too much research money goes into chasing the beginning point of the linear model. There may be no "magic bullet" and the management of PD may require the management of our lives. That is why you Newbies need to think about shedding that high stress job etc.before that next threshold is crossed.

In this morning's news:

http://www.sciencedaily.com/releases...0422150659.htm

Nurture Over Nature: Certain Genes Are Turned On Or Off By Geography And Lifestyle, Study Suggests

...."The most important implication of this study is that people with the same genetic makeup can be in different environments and have different expression profiles," Idaghdour says. "The same gene can be expressed in the city but not in a rural place because of the environment. So you must look at the environment when studying associations between genes and disease."....

Rick, I see the pd process in much the same way. Any and everything that causes stress on any of our systems is, collectively, the cause of PD. Stress gobbles dopamine. The dopamine producers, those neurons in the SN, are exhausted and can't meet the demand for dopamine which is unrelenting. Then finally after decades of this, they quit, one by one, as supplies are runnning low too.....and when 70% are down and out, it starts showing up noticeably somewhere in the muscles....often along places that have been injured way back and never quite healed or simply are out of place..and out of "tensegrity" for so long.

We have to keep on learning about what can be changed and how - it really is a comprehensive overhaul! And now we can be gene/geo specific too! The future will have special pd spas with therapies and remedies for all things stressful - physically, mentally, and emotionally and available to all

For now I go from Chiro to Physical Therapist to Massage to what I can, as I can.

I'd like to see MJFF fund a place for recovery using all available necessary natural means. Can you get behind this dream?

-when I told him that my neurologist didn't think stress had a role in causing PD,"But, but, stress affects EVERYTHING!!"

And it does. Among other things it blocks neurogenesis and our ability to repair damage as researcher Elizabeth Gould has shown. We are built to handle acute stress and do it very well. But chronic stress is another matter and is terribly destructive.

Analogies are handy for getting our minds around this way of thinking about PD. Imagine you have a big basket on the floor in front of you and overhead is a big chute which drops a colored ping pong ball at random times and of random color every few seconds. Like an old "I Love Lucy" skit, your job is to remove the balls as they come in and sort them by color. Say red, white, or blue. So long as a certain speed is not exceeded there is no problem but above that the basket begins to fill. At some point a ball drops and rolls off the basket pile and onto the floor. Say it was a blue ball and that it hitting the floor translates into that first symptom of PD.

Now one could argue that blue balls cause PD but even if you eliminated the blue ones the outcome would not change. And the mix of colors is not relevant either. It is the rate of balls matched against your ability to remove them from the basket that is the real process. But the research money goes to trying to figure out which color of ball is the culprit.

Ok, here are some of my recent developing thoughts about this whole PD mess. We are all primed to find that one thing, that key that is going to make the whole thing go away, and life go back to either how we remember it or what we thought it would be like...I say this as an early onset person, and maybe it's different for others. It seems that many things that we try often seem to help when we first try them, and we get excited about it, and sure that we have found that key...and then after a while, the body seems to just re-establish its resistance to any kind of help or remedy of this situation. And we feel depressed and squashed by the thought of even trying anything again --I don't mean to assume or presume, but am basing this on my experience.

But as Rick and Ibby I think are saying also, perhaps there can be a long-term curve of recovery. Which means that there will be off periods, bad times along the way, but perhaps slow, incremental and subtle changes for the better, so when you look back, over a couple of years, you are doing things better than you were, and while not cured, health is starting to get the upper hand again, or while you still struggle with various aspects of the condition, others have subsided or are improved in nuanced ways.

I think to have this model of partial recovery, one has to adjust one's expectations. No, you won't be the way you were overnight. And for myself, I have to be strict with my own thoughts, remember that I ultimately have the upper hand and am in charge of my own destiny somehow, and I say I am going to get better. And I need to keep this going during the bad periods, and use this energy to keep looking for ways to improve what I'm doing, to be healthier, to relieve stress of all kinds, to live a better life, so that is what starts to shape the foreground as well as the background of the disease experience.

This disease is so subject to our emotional approaches to it, even more than many other conditions. I think expectations of all kinds have a lot to do with shaping our reaction and hence our course with it. So for me I think it's a strange combination of acceptance, surrender, and strong determination, and a sense of humor, and nurturing gratefulness, and mourning the losses along the way, trying to lend a hand to others who are down...a whole way of being and defining life, I think.

I love it that Rick feels he has improved in many ways - others here also have mentioned their various experiences. Twenty years in now, and in my 50's - well, I really, really want to get off or reduce these meds, and the off periods still are a big pain...and the dystonia can still be frightening and out of control - but dystonia is about 5% percent of what it used to be, and I am dancing again, I am working again, I am happier maybe than I have ever been, more in control of my emotional life than ever before...and every time I see my neuro, he says, "you are not only not deteriorating, you are turning back the clock. Even regular people aren't supposed to do that."

I don't relay this to brag at all, and believe me, I have many difficult times. But overall there is a curve towards a mature relationship with this condition that signifies something, some kind of healing process....it's not sudden, sometimes barely visible, and not what I thought my life would be about ideally, but somehow tangibly moving towards something better....

None of us are going to go back to what was normal for us. And if you think about it, who would want to? I mean, we are talking about a state of being with a clock ticking in our brains. That is not a worthy goal.

Change has got to be a part of our vision. We aren't aiming for "normal", we're aiming for something better than that. Just what that is will probably be different for each of us but have common threads, just like the disorder.

There are some key features about PD and stress is at the center. Does anyone know of any condition that is more stress-sensitive? I can't think of one that comes close. The French neurologist Charcot who gave PD its name felt that stress was the cause. And I don't care what the books say, I don't think that what we call PD existed before the Industrial Revolution. It is toob common and distinctive to have been essentially overlooked.

And remember, those of us who were around at the time on the old BT forum, what weirdly stressed-out lives we had as little kids? And how disfunctional so many of us are? Overachievers? Heck, even our recovering alcoholics end up taking over their local AA chapters!

Any Tolkein fans here? Remember when Gandalf was lost to the evils in the Abyss? He returned but not as he was. That's what we have to work out for each of us, I think. The old way was killing us in a slow and subtle manner. Something new is called for.

wow! i'm new here and you guys are all so cool!

thank you all for your astute and meaningful remarks.

i am better for reading them.

best wishes and namaste,

louise

dear one,
yes - I hoped to have been, way cool? hahaha!
but I am still after over 20 years with the PD tremor etc. finally dxd after hunting for years, going from one neuro to the next or anyone that could explain to me why a 28 year old women would shake?

and I still feel PD was caused by hypoglycemia/ low blood sugar/ and brain damage... *lightbulb

and
dear rev?
keep on going - were very close in our study of PD - to the why and how?
peace to your heart...

Thank you lou_lou. I shall continue you onward.

Regarding the "cause", glucose problems may indeed be a part. But I am coming to believe more and more that the "real" cause is the loss or lack of the ability to repair damage that, itself, comes from a dozen possible sources.

Whether that failure results from Vitamin D issues (my hypothesis du jour) or some other point, it is this type of explanation that makes the most sense. It explains how we are each so different (multiple sources of damage) and yet so similar (a common point of failure of repair capabilities).

The Amgen fiasco did nothing to unmask the causes and went straight to the repair system failures. Possibly curing a number of projected income streams. Not just PD,but AD, MS, etc. Further, if Vit D has a similar effect, there are purportedly a dozen cancers there too. If your corporate plans are based on a longterm relationship with all those customers, a cure is not good news. And if one of your researchers has pointed out that Vit D has a similar effect...