[Debi Brooks]

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

[Jim091866]

Debi, I am interested in this idea, how far have you gotten? Do you have access to the information from We Move, etc? My contact information is

Jim Scheuerman
( 407) 417-4309

I don't know if you are trying to simply get listings or otherwise, I'm versed in MS Access and would like to help in any way possible.

[lou_lou]

my heartland - they all think PD is a psychosis - and I make it up
for example -
tardive dyskenesia -
or
Dopamine-responsive dystonia (DRD), also known as hereditary progressive dystonia with diurnal fluctuation, Segawa's disease, or Segawa's dystonia, is a genetic movement disorder which usually manifests itself during early childhood at around ages 5–8 years (variable start age).

Characteristic symptoms are increased muscle tone (dystonia, such as clubfoot) and Parkinsonian features, typically absent in the morning or after rest but worsening during the day and with exertion. Children with DRD are often misdiagnosed as having cerebral palsy. The disorder responds well to treatment with levodopa

etc

[indigogo]

While the internet is connecting and informing more people fast and effectively, there still are huge gaps in disseminating important information to the people that need it. Great swaths of both patients and doctors (general practitioners and neurologists) are unaware that there are specialists in Parkinson's disease, so the referral is never made - and patients' health and lifestyle suffers needlessly. We should all do our part to spread the word about Movement Disorder Specialists - but the problem still remains of reaching the unreachable. (This is true for clinical trials participation as well.)

What is the answer? I know MJFF is sorting through the ideas. Would the concept of one national source for all PD information (a clearinghouse of sorts) be reasonable?

[toadie]

although, it is very expensive to see a movement disorder specialist.

simply put, it's a neurologist that specializes or has greater varied experiences wth parkinson's disease or such.

i saw a neuro that was movement disorder specialist, he was $500 an hour, ten years ago. my insurance paid $180 and i had to pay the rest.

after 10 years of pd, i was somewhat disappointed that he re-diagnosed me with pd, it was kinda bittersweet. i dunno, mayhap, i was hoping for something better or at least something else.

his experience made it easy for him to tell between the side effects of meds and what level of progression i was actually on.

he made recommendations for meds and such, kept in contact or consulted with my neuro.

all in all, the movement disorder specialist, made a big difference with my treatment.

[ginnie]

Hi dear woman, Hope you are doing OK today. I have been thinking about you alot. Did you get an appt. or help from MO? I sure am hoping you can get the help you need. Let me know how you are. always ginnie

[Jim091866]

Originally Posted by toadie

although, it is very expensive to see a movement disorder specialist.

simply put, it's a neurologist that specializes or has greater varied experiences wth parkinson's disease or such.

i saw a neuro that was movement disorder specialist, he was $500 an hour, ten years ago. my insurance paid $180 and i had to pay the rest.

after 10 years of pd, i was somewhat disappointed that he re-diagnosed me with pd, it was kinda bittersweet. i dunno, mayhap, i was hoping for something better or at least something else.

his experience made it easy for him to tell between the side effects of meds and what level of progression i was actually on.

he made recommendations for meds and such, kept in contact or consulted with my neuro.

all in all, the movement disorder specialist, made a big difference with my treatment.

I once had a MDS that I had been referred to tell me that my PD symptoms were psychological. That was my experience with MDS. What made a HUGE difference in my life and the way I handled PD was for me to do what I felt was right. I limited my meds contrary to advice to take agonists, inhibitors, etc. I have now reduced my meds to less than 1/2 of what I was on. In addition I have very little "off" time. I'm not saying that I'm as great as I could be but I'm much more comfortable than I was.

[ginnie]

Dear Lou Lou, I tried your private messages, your board is full. Can you empty so I can contact you? ginnie

[pkell]

I agree that seeing a Movement Disorders Specialist is probably the best possible route, at least in most cases. Take the case of a friend of my daughter (33) who was diagnosed by the local neurologist with PD and put immediately of 600mg of Sinemet a day. She got to the MDS I go to and he doesn't think she has PD at all.

The real problem is much more elementary. Most of the people in my poor rural southern state do not have access to a neurologist much less a MDS. Entire swaths of the state have practically no specialty medical care. There is only one MDS in the state that i am aware of and he is in the far NW corner making it at least a 6 hour drive for many. I see an MDS in another state. I have to fly up once or twice a year, spend the day and fly back. It's expensive and tiring but there is no reasonable choice that I can find.

Until we begin to compensate physicians based on some measure besides procedures we will not see any dramatic increases in the numbers of these guys. They have to train for years, incurring huge student loan debt but not the income to pay it off. There will have to be an incentive to locate in areas that are severely underserved and the simple betterment of humanity has not worked so far. Health care in this country and possibly in all the world is in a mess and will require a more complete overhaul to right it than, I think, any of our political representatives has the fortitude to take on.

So what is the answer? Choose your parents well. Rich is better than poor, because so far if you have enough money you can get pretty good care, if you don't, good luck.

***One more thought... While MDSs are not board certified most of the ones at University Hospitals have done a fellowship in Movement disorders and passed an examination. It is usually only retained by the schoold but it does show a level of post residential skill and training. By looking at their training (listed on the University's website) you can determine the quality or reputation of the institution.

Doctors are like people, some are nice and some aren't. If you get a bad one, move on. Because of their extra training they can be of great value to you.

[Sasha]

My experience with the movement disorder specialist (who is well-published and highly regarded professionally) was that this expert was cold, arrogant, demeaning,insulting and insufferable! Came in with a clip board, asked about 6questions, had me walk across the tiny exam room, and left without comment. This was a consistent pattern, starting from the very fist diagnostic appointment - that time the doc did say "You have Parkinson's" before leaving. I was lucky enough to find a neuro who did his residency under the great specialist and knows Parkinson's but sees people with other neuorlogical diseases and TALKS to all of us. I want to be treated as a person, since no one has a cure, at least be kind, polite, respectful. It counts for a lot.