I started a new thread since this topic came up on a PD genetics thread where I fear it might get buried. Too important.

I want to reiterate my recommendation that all PD patients try to see a Movement Disorder Specialist and there was some confusion about just what that means.

Movement Disorder Specialist (MDS) isn't a certified specialty anywhere (in the US or elsewhere). It is merely a self-declared practice interest of a neurologist. Within the field, "peers" typically recognize "peers" as MDS based on where they were trained. And, basically the idea is a neurologist who sees a significant number of patients with movement disorders will likely declare him/herself a specialist. There are many "movement disorders" but Parkinson's disease is the most common. There are two "trade" groups for these specialists...the Movement Disorder Society is an international professional society http://www.movementdisorders.org/ and We Move provides educational services for professionals (ie, CME's) http://www.wemove.org/ In addition, there is a movement disorders study group within the Academy of Neurology which would also be a way to call out neurologists who have this specialized interest.

I mention all of this because I actually remain concerned that it is important for patients to see doctors who are positioned to provide the best care…and, in general, I think most people assume that a doctor who sees more PD cases, will be better positioned to diagnose accurately, explain risk factors, discuss expected disease course and prognosis, prescribe appropriate medications and manage treatment most effectively, discuss opportunities for patients and controls to participate in clinical trials etc.

We know from pharma data that 2/3’s of PD patients never see a “specialist” (in the whole course of their disease)…to me that translates to poorer care/poorer treatment/poorer outcomes. A great tragedy.

I for one have long been interested in helping patients get to the “best” treatment settings. And, it is a dilemma we continue to noodle at MJFF. The challenge is that we don’t have an objective way to direct folks…since the “specialty” isn’t certified. Thank goodness that physicians in the know will declare themselves specialists and many Universities in locations where many PD patients are treated, they will refer to themselves as Parkinson’s Disease and Movement Disorder Centers (search optimization strategy perhaps!). Independent of self "advertising" I can tell you it isn’t easy to simply access a reference list of MDS state by state (or country by country) —although I promise, I’m working on this. This very topic came up at the MJFF SAB meeting last week.

But in the meantime, I urge patients to look for doctors who at least declare themselves as Movement Disorder Specialists---it’s a great start (although no guarantee of anything except that the person knows what they know--which is better than a physician who doesn't realize they don't know enough about PD!) Admittedly there aren’t enough MDS (for instance I think there is only one in the whole state of Nevada) but to the extent you can find one, I think it is worth the effort to see them. Not only will you improve your chances for “best” clinical practices but you should also more informed responses to questions about things like genetic risk factors for PD (this is the topic/thread that lead to my earlier comment that it is important to get to a specialist in the first place—get to more informed practitioners!)

I hope this helps.

Debi