A movement disorder specialist is a neurologist with additional training in Parkinson’s disease (PD) who personalizes care to an individual’s symptoms and needs. People with Parkinson’s who see a movement disorder specialist often report feeling more informed and better equipped to manage symptoms. We spoke with Katherine Leaver, MD, Assistant Professor of Neurology in the Division of Movement Disorders at Mount Sinai Beth Israel in New York, about how movement disorder specialists can help people with Parkinson’s and their families.
The Michael J. Fox Foundation for Parkinson’s Research (MJFF): What is a movement disorder specialist?
Katherine Leaver (KL): A movement disorder specialist is a neurologist who has completed a fellowship, which is one to two years of extra training in movement disorders, which is mainly in Parkinson’s disease. This enables a neurologist to become an expert in taking care of people who have PD.
Some movement disorder specialists, like me, are clinician-researchers, which means we split time between taking care of patients and running clinical trials or seeing patients for research visits. My patients help research by participating in studies and by giving information that inspires research questions. And my research helps patients, either directly by testing potential treatments to slow disease progression, or indirectly by looking at causes that could be targets for new treatments.
MJFF: How is a movement disorder specialist different from a general neurologist or a primary care physician?
KL: Because a movement disorder specialist has completed extra training, we have more experience with Parkinson’s. We are specifically trained to take care of the many motor and non-motor symptoms that can arise in Parkinson’s. And we see more people with Parkinson’s on a daily basis, so we are more likely to be aware of and familiar with symptoms, treatments and ongoing research.
MJFF: Why is it important for a movement disorder specialist to be part of the Parkinson’s care team?
KL: Parkinson’s can affect many parts of a person’s life. A movement disorder specialist is expertly trained to address the various motor and non-motor symptoms that can occur through a holistic and individualized approach to improve quality of life. In general, movement disorder specialists have more access to community resources, such as physical and occupational therapy, boxing programs and tai chi classes, for example, which we can refer patients to when necessary.
During my two-year Edmond J. Safra Fellowship in Movement Disorders, the most important thing I learned was how different everyone with Parkinson’s is — the symptoms they have, the way they experience those symptoms, and how they want to manage them. Having additional training in Parkinson’s shows you how individualized the disease is and how to personalize treatment.
MJFF: How can a movement disorder specialist help in Parkinson’s?
KL: Primarily, we have experience prescribing medications for both motor and non-motor symptoms. But in addition to medical therapies, we also have “tips and tricks” for lifestyle adjustments to help symptoms that we’ve learned from other patients. We also provide evaluation and referral for deep brain stimulation (DBS) surgery when appropriate as well as support for family and care partners.
MJFF: How do you add a movement disorder specialist to your care team?
KL: Most academic medical centers, which are hospitals affiliated with a university, have a division of movement disorders. You can search online to see if there is one in your area. The International Parkinson and Movement Disorder Society (MDS) also has a specialist directory. And word of mouth is always good. You can ask other people with Parkinson’s if they have had a good experience or get a referral from your general neurologist or primary care physician.
MJFF: When should you see a movement disorder specialist? How often?
KL: Anyone with Parkinson’s — it doesn’t matter how early after the diagnosis or how mild the symptoms — should see a movement disorder specialist. It’s never too soon. As for how often, it depends on your preferences and your Parkinson’s. On average, most people see a movement disorder specialist once every three to six months. But if your symptoms or medications change more often, you may want to see your specialist more regularly.
MJFF: What should you look for in a movement disorder specialist?
KL: Every doctor has a different style and every patient looks for different things. But the most important thing is to find someone you feel comfortable with and who listens to you.
MJFF: How can you work best with your movement disorder specialist?
KL: Writing down your questions ahead of time is helpful because when you meet in person it’s easy to forget what thoughts you have outside of the appointment. I also enjoy when patients bring family members. It’s helpful for me to get extra information and a unique perspective and for the patient to have a second set of ears. And be honest about what’s going on at home. Don’t sugarcoat your symptoms. We know there are good days and bad days, and we need to understand the full picture so we can make the best treatment recommendations. Lastly, don’t worry about how good or bad your exam looks. We interpret that with all the other information you provide.
MJFF: How do you coordinate communication between your movement disorder specialist and other care team members?
KL: It’s okay to ask your doctor to call another provider, especially if medications are being adjusted or new recommendations are made. At the very least, request that notes are shared between your providers. I always type out a summary for patients so that they remember the plan. If your doctor does something similar, take this to your other visits to facilitate communication.
A deeper understanding of Parkinson’s biology could improve the tools and care a movement disorder specialist can offer to treat Parkinson’s. You can help us achieve that. Our landmark Parkinson’s Progression Markers Initiative study is open to anyone over age 18 in the U.S. Whether you have Parkinson’s or not, join the study that could change everything.