My concern is that doctors then may unwittingly see the results of studies as scientifically valid and "evidence based" and use them to make treatment decisions that could in fact be harmful. I am just fed up at the lack of standards that seem to exist across the board from diagnosis all the way to treatment; I do not think that the fact they do not really know what they are looking at is a valid excuse. Why? They act (many, not all) like they do have all the answers and continue to substantiate a 60 year old hypothesis based on what evidence? Clinical observation of symptoms and response to levodopa? We are not the ones who have established that PD revolves around dopamine; the scientific community has and continues to perpetuate this hypothesis as "evidence based" truth by setting up fundamentally flawed research trials then sharing the results as if they were at all even remotely valid?!? I understand that MS patients have similar research design problems, but they have actually started to fund their own trials- who can blame them?

Call me crazy, but if there is a whole mythos or field of medicine based on this hypothesis, it seems to me they would have long ago established some sort of definitive way to measure it while we are still alive? How can scientists continue to study anything using this hypothesis without some way to ensure a computational baseline point beyond noting the presence of cardinal signs for research participants? I assumed that this was in place and that it was the same for all PD trials.

It doesn't matter that we realize they don't know what they are looking at, it matters that they think they know and bank their careers on a dopacentric perspective, I would think they'd have an elaborate system in place by now to substantiate it. What is it going to take to then challenge this assumption? We used to think the world was flat and the earth the center of our universe...would we still think that in the last century after some 50 years had passed with no real proof of this? Maybe the bigger question is why are we even studying levodopa at all any more?

Laura

seems emphasis is on dopamine receptors, not just dopamine.
http://www.ncbi.nlm.nih.gov/bookshel...sons&part=A119
noone knew how aspirin worked until a few years ago.
but it works and is cheap.

have you reviewed all the current pd drug research? i would guess a small % is devoted to levodopa. i've seen duodopa and a dopamine patch which would be great.? also improve controlled release formulations.


neurologix's gene therapy introduces the gabba gene. nothing to do with l-dopa.

Loss of smell seems to be accepted as the earliest known piece of the puzzle. How does it relate to the dopamine drenched center? As far as I know, it doesn't.

Pushing in the other direction, we have non-motor symptoms such as anxiety. Again, how strong are the ties to dopamine?

It is as though we have a jigsaw puzzle and have managed to complete two or three of the corners but have not connected them together.

Laura -

I agree with you; just wondering why this particular study/article provoked such a strong reaction when it is just more of the same evidence that Parkinson's is misunderstood - that's all!

I also agree with soccertese - research has gone beyond dopamine. I believe that most of the best minds in PD research understand what we, the patients, understand. The gap exists between those of us who pay attention, read the literature, discuss and track every detail of our health and our bodies, have access to the latest thinking, and those who don't. Those who don't include many, if not most, of those in the frontlines of diagnosing and treating PD - GPs, neuros - we are way ahead of them.

So, that's where I agree with you - there is a certain danger of uninformed docs (mis)treating patients with PD, or PD going undiagnosed or misdiagnosed (what the h*ll is it anyway?).

Information dissemination is a missing link. No one seems to have a good answer for that. I've been encouraged by my interactions with MJFF because they have a strong focus on marketing - BUT - what information do we disseminate? Would the most accurate message be "STOP! - we don't know enough - and what we think we know about treating PD could be dangerous!"

The research is turning in the right direction; we are lucky to have impatient patients like the Brins, Grove, and Fox on our team who have money and influence. I think patient advocacy and activism at all levels has been instrumental in challenging the status quo and raising red flags; the science has responded - after all, there has been no break through in 30 years - maybe, just maybe they've been poking around in the wrong place? They might have come to the same conclusion on their own, eventually. I like to believe we've accelerated the process.

Anyway, your outrage is understandable. We need to keep expressing our concern while praising those who are doing the hard work of proving what we know to be true.

sinemet sure helps reduce my anxiety and brain fog better than anything else.
google smell and dopamine.

not sure what the point is, seems most pd research being funded is trying to find cause, prevention, better treatments than sinemet.