get up off the floor, wipe the dust off myself and put in a few words here, even though I feel like i have no right to for various reasons.
First, you can't criticize anyone who has raised that much cash for PD research, no,no you just can't. Personally, I am sick and tired of being told by my family that I should be doing better because "MJF has had PD for longer than you and look at how well he is doing". It makes me wanna puke so I won't get into it, but I think that most of you know what bugs me about this.
Secondly, and it's been said before, PD has a hundred or more "modifications" and "manifestations" of the disease. What is useful to one patient may be poison to another. For instance, we have all seen some of us rave about Mirapex or Ropinirole, and others say it almost cost them their lives. There are different things happening in the forebrain and the midbrain dopaminergic compartments. Different brain structures can be involved in the overall factors that contribute to a case of PD. This, to me, means that the input of each individual who has PD can give clues to the overall etiology of PD. Some PWP are very compromised in certain areas of the brain that contribute to their overall "case" of PD, and their personal experiences with the treatments that they are given, lead to clues about the differences seen in the various "types" of PD (if you can group PD by "types). Researchers can not generate the "data" needed to characterize The differences in PD by any "models". They cannot just say "loss of SN neurons is the hallmark of PD". It is descriptions by PD patients that give clues as to what is happening where in the brain that leads to the overall diagnosis of PD. These "clues" are generated by giving patients many different drugs to try over a long period of time, and then "crunching" the feedback. As a specific example, PWP who have tried Amphetamine, can report a "beneficial short term effect on their symptoms" a "negative long term effect on their symptoms" or "not much of an effect", long or short term treated. Or they can report other experiences from being treated with amphetamine while they are afflicted with PD. The overall "crunching of the data" could suggest to researcher that in some forms of PD, the effect of amphetamine upon long term dopaminergic effects in the nucleus accumbens (the midbrain structure said to be responsible for the observed physiological effects of amphetamines), could contraindicate or reinforce the use of amphetamine in the average PD patient.
That was just one specific example that leads to "patient driven" results as to the clinical pharmacological usefulness of a specific drug for the treatment of PD. Researchers cannot arrive at the overall result of the usefulness of ANY treatment for PD, without the input of the patient. All the theories that would seem to suggest a useful GENERAL pharmacological treatment paradigm for PD are NOTHING without the input of a whole lot of patients experiences. PWP who generate data by their experiences with new treatments are the only thing which will lead to any type of "cure" or any better "amelioration of symptoms" in PD. A bunch of scientists, no matter how well studied they are in the field, cannot come up with useful PD treatments out of thin air.