How might the care from a regular neurologist differ from one that specializes in parkinson's disease or movement disorders?

[Sedona]

I have seen suggestions from people in this group that it's important to find a neurologist that specializes in movement disorders, could you please explain why you feel this is important?

[honeycombe3]

Hi Sedona, my consultant is a gerontologist whose other major is cardiology. As I've had 2 heart attacks in the past 3 yrs this is a bonus!! I'm UK based & had no choice of consultant initially - I don't know whether or not I shall have any choice when he retires later this year. If you look at my posts on this site you understand that I feel compared with the majority of PwP I get the Rolls Royce treatment. So I think I'm saying that the particular aspects of PD which a consultant favours or in which he\she is qualified are not as important as interpersonal skills & a willingness to put the patient first. Having been dxd for 10 yrs now I find emotional & cognitive issues have more impact than movement/mobility. If you want to widen your access to a range of expertise try volunteering for clinical trials. I've been assessed for 4 now & you meet people at the forefront of PD research. The trials are led by experts in their field & you have the satisfaction of being able to contribute to the quest for a cure.

[BaileyT]

I can only respond from my own experience. It took four years to be diagnosed, in that time I saw two neurologists that did not specialize, they had no idea what was wrong with me. They kept referring me to an orthopedic specialist. After that I was referred by my GP to a movement specialist at UCSF (University of California/San Francisco )and was finally diagnosed. I think it's very, very important to see a neurologist that specializes in Parkinson's and movement disorders.

[alanrob in reply to BaileyT]

i can empathise with you baileyT i also had similar experience,my first neuro was a geriatrition and i was diagnosed at 43,not by him i might add!!

[soup]

Specialists of any stripe can be brilliant or poor. My concern with movement specialists is that they could treat Parkinson's as a movement disorder and we all know it is so much more. Elderly care consultants seem to be used to listening and, linking symptoms and other conditions which might complicate the disease process. However, they do need to have man interest in Parkinson's to be fully effective. We gave been exceptionally lucky with our consultants and with the Parkinson's Disease Nurse service that we have access to.

[quirkyme in reply to soup]

wow! it would be great to have a PD nurse service here in the states.

[soup in reply to quirkyme]

Yes, the NHS comes up trumps again. Parkinson's UK works hard to seed fund Parkinson's nurses who are then paid for by the NHS because they are usually very cost effective.

[quirkyme in reply to soup]

that makes so much sense to me. As a caregiving spouse, I have so many questions and concerns that could be answered and assuaged that relate to issues of daily care.

[ParkinsonSpouse]

I copied this directly from the Parkinson Disease Foundation website:

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pdf.org/spring12_specialist

"Most movement disorders specialists are neurologists who have completed an additional one or two years of training (a fellowship) in movement disorders, a sub-specialty of neurology. Movement disorders specialists may see patients in a private practice or at university medical centers. Often they perform clinical or basic science research in addition to caring for patients. They may also teach young doctors who are on their way to becoming specialists.

People with Parkinson’s may constitute 50 percent or more of a specialist’s practice. With this level of experience, a movement disorders specialist will be more familiar with the range of available Parkinson’s medications, how they work, and their possible side effects. A movement disorders specialist is also more likely to discuss the role of clinical trials.

Finally, a movement disorders specialist is more likely than a general practitioner or a general neurologist to be aware of which additional health care professionals may be able to help you tackle the day-to-day challenges of PD."

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To read even more information on this topic, click on the link at the top of my post.

I'll share my hubby's experience with you. He had vague symptoms that didn't make much sense...like he felt he was shivering on the inside, during his daily walk, he felt he was tipping forward, & once in a while, when he stretched out on the couch, he would feel his leg twitch, but no one could see it...he also had drool on his pillow & was violently acting out some of his dreams. Anyway, I started searching the web & came to the conclusion that he probably had PD. Our family doctor confirmed my suspicions & was ready to begin treatment. He was going to prescribe my husband a tiny pill...I think it was traditional PD medicine. We decided to see a neurologist that specialized in movement disorders/PD. He prescribed Amantedine, later Azilect & Mirapex ER. I am so glad we decided to see the movement specialist. I feel that he will wait til later to prescribe the medicine our family dr. was going to begin with. And he understands the progression of PD better than our family dr.

My hubby's neurologist just retired, but we are fortunate to live a couple hours from Cleveland Clinic so we will be choosing another Cleveland Clinic movement specialist.

[inkyorion]

Hi Sedona, you've had some very comprehensive replies but on balance Id agree with honeycombe3.

In an ideal world, Id prefer a neurologist who is Parkinson's aware and trained as a movement disorder specialist ......but, Id be hard pressed to swop my present general neurologist who is certainly Parkinson's aware and whose interpersonal skills and willingness to put the patient first are second to none.

[PatV]

I have a similar experience. 2 years one neurologist who was convinced I did NOT have PD, but referred me to PT. The PT MD who evaluated me was suspicious and referred me to a general neurologist at LICH in Brooklyn. It was a clinic setting in a teaching college and he diagnosed me. I started to read up and realized I needed a movement specialist. Thru good fortune I found my present doctor. He started an exercise research program and is a good listener.

[PatV in reply to PatV]

August 14, 2003 was the date referred to neurologist. I always remember because of East Coast blackout and I had to walk home from Brooklyn to upper west side Manhattan.

[Court]

My consultant is absolutely brilliant. She is my 3rd. The first was one of the most unsympathetic people you could meet. My second was more compassionate, but he retired. My present one always has time to listen to me which, I believe, is most important. She works for the elderly but specialises in Parkinsons. I am extremely lucky to also have access to a Parkinsons Nurse, who I can contact by phone and who always returns my calls. I also have access to a physiotherapist who specialises in Parkinsons. I think you have to keep trying until you find the right Parkinsons Consultant who you feel comfortable with and most importantly who listens to you.

[soup]

Well said Court.

[Kadie57]

My movement disorder Doctor knows Parkinson, she knows my meds and my DBS equipment!! They are wonderful the clinic is in Madison Wisconsin at the UW movement and disorder clinic, I can say with our a doubt that they saved and gave me back my life!! The others I dealt with caused more problems for me I have never be so thankful for and ins change that made me go to Madison (2 1/2 hr. drive from my home) When I went to my 1st app. I was asked how I took my pills, she had me lay them out on table, she snapped a cell phone photo and said I need to know how to write the scripts so you never are out of medicine. I almost flipped with joy!!! SHE BELIEVE ME TO KNOW WHAT I NEED TO FUNCTION.