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.

Rick, you the man.

thank you. i am reduced to hand signals

well said -yall!

quotes of thomas edison -apply here:


Everything comes to him who hustles while he waits.
Thomas A. Edison

Faith, as well intentioned as it may be, must be built on facts, not fiction--faith in fiction is a damnable false hope.
Thomas A. Edison

Hell, there are no rules here-- we're trying to accomplish something.
Thomas A. Edison

I never did a day's work in my life. It was all fun.
Thomas A. Edison

If we all did the things we are capable of doing, we would literally astound ourselves.
Thomas A. Edison

Just because something doesn't do what you planned it to do doesn't mean it's useless.
Thomas A. Edison

Many of life's failures are people who did not realize how close they were to success when they gave up.
Thomas A. Edison


Opportunity is missed by most people because it is dressed in overalls and looks like work.
Thomas A. Edison


Results! Why, man, I have gotten a lot of results. I know several thousand things that won't work.
Thomas A. Edison



There is no expedient to which a man will not go to avoid the labor of thinking.
Thomas A. Edison

To invent, you need a good imagination and a pile of junk.
Thomas A. Edison

We don't know a millionth of one percent about anything.
Thomas A. Edison

I have not failed. I've just found 10,000 ways that won't work.
Thomas A. Edison

If I find 10,000 ways something won't work, I haven't failed. I am not discouraged, because every wrong attempt discarded is another step forward.
Thomas A. Edison,

Tena -
I love all of those you listed but I disagree with this one. No such thing as false hope - hope is only that, not a promise, not a certainty, not a finality. And who is to ever say that something is absolutely not possible - especially with PWP - no one knows enough to be able to say that. When I suddenly realized, hey, with early onset PD, there isn't much of a record because it's been relatively rare until this generation, I think - so what the hell does anyone know about what's going to happen to all of us taking mirapex for 30 years or more, or any of those other drugs of choice....so in a way that leaves things way more open for possibilities, for ways to transform this monster...

I'm coming to believe that this disease is so difficult to deal with because in some ways it represents the whole of the world in a kind of paralysis somehow, as we slide towards direness around the globe...We are all connected. And if some of us can do the work of reactivating a single body, limb by limb, reintegrating soul and matter, and if part of that work is figuring out what makes a single balanced life on this planet, without pesticides, with less stress and more laughter, and more rest, and more compassion and more patience, and more appreciation of everything, and a fierce enemy of the pain that so many people are carrying...well, even a single life can have great vibrational impact on our environment and our society. So altho some of these nights can be pretty dark...really I feel honored to attempt to shoulder this thing. And find myself accepting the labrynth.