The more I seem to learn, the less I seem to know! Six years into this journey, I am just now learning that insulin issures are part of PD as well, which complicates things considerably, at least to me. It is yet another area that PD affects, and must be dealt with. There are others as well, of course, blood pressure, liver/kidney function, etc. But realizing that glucose uptake and utilization is probably involved in PD as well is daunting because of the vital role those play to the survival of every cell in the body.

The question I have is this: how on earth do we figure out what is going on in our bodies, when they are full of meds with some known and a whole lot of unknown side effects? We cannot possibly get an accurate "read" on what is wrong with us when we are riddled with drugs, many of which cause the very symptoms they are supposed to alleviate. Yet we cannot realistically get off the meds to see what all is going on!

The other thing I have been wondering for some time is this. If, like diabetics, we simply lack something, be it dopamine or insulin, then we should, theoretically, be able to replace that and live an otherwise happy, carefree life. But it doesn't work that way for either disease. Diabetics take insulin for life, but continue to have increasingly significant problems like vision loss, neuropathy, etc. We all know what taking sinemet does. And why is this? There must be something fundamentally wrong in the balance of the body, but what? And how can we really tell what it is when the body is full of meds which it is trying to balance out in addition to the condition the meds are given for in the first place? Aaaagh!

I'm not articulating this very well at all. Has anyone gone away somewhere pristine, eaten a completely nutrionally balanced diet, drank pure water, breathed pure air, all without drugs in the body? And if so, what happened to the PD symptoms?

Please forgive the flippancy. It helps me approach sanity.
PD is far more than dead neurons, low dopamine, and even the glucose issues. It is systemic and probably affects everything. Your statement, "There must be something fundamentally wrong in the balance of the body, but what?" says a great deal. [IMHO] It seems to me that YOPD comes down to a loss of the ability to maintain that balance. This often comes after a lifetime spent in pursuit of a similar goal in our lives, jobs, relationships, etc. We are like an old time vaudeville act spinning plates on the ends of sticks.

There have been a half-dozen or more destructive processes reported as relevent. Mitochondrial impairment. Misfolded proteins. But my bet (this week, anyway) is neuroinflammation. Our bodies pour out a dozen or more chemicals into our functional center (the CNS) and the bloodstream spreads them to our far corners.

As you point out, it is almost impossible to see past the drugs. Six months ago, I switched to ldopa/cdopa for that very reason. It seems to have helped.

The system which maintains the greater Meta-Balance and allows adaptation to a changing environment has a fluid foundation. It is a brilliant design when it works, but a real mess when it doesn't. As a result, things that work today may be useless tomorrow.

What to do? This month it is anti-inflammatories. Next month????
-Rick

Never has anyone articulated exactly how this feels so well- I cannot put it into words other than to say it is like feeling trapped by our bodies, an unyielding medical profession and research system, and a crude outdated treatment that can be addictive and life threatening to stop taking. The line between disease status and treatment only becomes blurrier. Doctors used to prescribe "drug holidays" until they noted the mortality rate; in its place we have DBS. Is that any more or less risky?

Laura

I am currently not on any pd meds. Mirapex didn't seem to be helping much after 11 yrs on it. Cut it down from 4.5mg/day to 1.5mg/day a while back - have been drug free for about a week and nothing much seems to have changed.

OMG. This is what Andy Groves from Intel used to speak about - that science should investigate these "aberrations". Right now, if a therapy or drug does not help at least a third of the patients, but does wonders for a few - it is thrown out. But science should investigate the few who do benefit. He was talking about the infamous GDNF trials, where one patient improved by 80% - and that was all we heard about it. Other patients, supposedly, did not do so well, so Amgen threw the whole thing out of the window - and the patient who was 80% better was ignored, because he was not the majority. At the time Andy said it made him furious that they did not try to learn everything they could from the 80 percent improved guy.
I am being incoherent but you can probably figure out what i am trying to say
and you stopped taking Mirapex after 11 years and no drugs at all for a week? The FDA and NIH helicopters should pick you up and take you to the top scientists and tell them to at least come up with a theory. Spotlights should be focussed on these stories - and there are many such stories - about different people living the disease differently