i agree with you 100% that we have to take the initiative, which explains the huge business in alternative medicine and supplements. this board wouldn't exist if we weren't trying stuff on our own, you can only discuss sinement, amantadine, agonists so much. surveys have shown most pd'ers are trying alternative treatments. i think most aren't posting here.

there have been a lot of clinical trials trying vitamins and other supplements but i assume most md's and neuros don't want the liability of prescribing them and might not trust the studies, many are overseas. just speculation there. i do know that if i mentioned to my neuro that some supplement had benefitted me he would be very interested. i will throw out IV glutathione as an example, it was hyped and still is as a treatment but when a clinical study was done by HAUSER at the USF it was found ineffective. so i can see where neuros/GPs might be a little skeptical.

i have the same experience, my neuro and GP really don't ask me "how are you really doing?", my neuro also says i look good, my GP doesn't even ask me about my PD. I really don't blame them as much as our way of reimbursing doctors, they have to have a diagnosis and approved treatment to get reimbursed by insurance companies, so they might not want to try a lot of alt. treatments since insurance won't pay for it nor will the patient. when you think about it, conventional medicine is leaving a lot of $$$ on the table by not offering alternative treatments which from my experience of going to alt-med practioners can be incredibly expensive since they seem be willing to try an endless number of supplements/treatments, many requiring lab tests at independent labs, none covered by insurance.

i hate to say it but i'd rather see the big research money going towards the "cure" rather than trying to test supplements that might have a minor affect. and neuroprotection is very difficult to prove, look at how much TEVA spent on their azilect study and yet the results are still being debated. vitamin C, E, selegiline, sinement, agonists, creatine and other supplements/drugs have been evaluated for slowing progression and nada.

and i'll be a broken record, lack of volunteers is holding back pd research as much as anything else and it's very hard to prove a benefit in a progressive disease with no biomarkers and multiple causes, and still not sure what exactly causes the progression.

bastyr university is a large alternative medicine organization here in seattle area. i haven't visited them but they do clinical trials, they are doing one testing intranasal glutathione. i don't think i'll apply since the IV trial showed it wasn't effective and i might get a placebo.

http://www.bastyr.edu/research/studies
http://bastyrcenter.org/content/section/3/183/

it would be interesting to see their approach to pd and how much it would cost, don't remember anyone posting ever going there but if there is an organization that should offer an integrative approach they're it.