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8 Questions You Always Wanted to Ask a Movement Disorder Specialist

Movement disorder specialists (MDS) are neurologists who specialize in conditions such as Parkinson's disease (PD) and are experienced in treating PD in all its phases. Dr. Janis Miyasaki is a movement disorders specialist and professor of neurology and medicine at the University of Alberta. We asked Dr. Miyasaki to delve into the medical side of the Parkinson's experience.

Why is it important to see a neurologist instead of a primary care doctor to treat Parkinson's?

The average family doctor will see fewer than five people with Parkinson's disease in their entire professional life. That doesn't allow them the comfort level of caring for a patient, diagnosing them, and guiding them through the stages or moments of PD to help them maximize their quality of life.

A neurologist specializes in diseases of the brain, spinal cord, muscles, and nerves, including Parkinson's disease. Additionally, a neurologist spends four to five years in residency to gain this level of experience, meaning she has many more opportunities to care for these patients over time. They can take a look at the advanced therapies that have been developed in recent years to improve the lives of people with PD.

How do movement disorder specialists collaborate with other members of the PD care team?

Neurologists specializing in movement disorders collaborate, first, with the patient and her family. People don't often consider a spouse or family member to be part of the care team, but in my opinion, they are the most important members of the care team. Caregivers or care partners are a second set of eyes to watch for symptoms and can help advocate for your loved one.

Then there is the traditional team. Most movement disorder clinics have nurses who have dedicated their professional lives to caring for people with Parkinson's. This gives them the experience to troubleshoot between neurology visits and reinforce messages from the care team.

We often work alongside physical and occupational therapists. As an ETM, I communicate with these specialists because they may see a symptom or challenge that we may not have noticed in the clinical visit. Many units also have speech-language pathologists who help with speech and swallowing issues related to Parkinson's, as well as nutritionists who can help with symptoms such as constipation.

It is important that the team is always in communication, so that we all agree on how we can best help our patients. In my clinic, every morning we communicate to talk about the patients we will see that day. All members of the care team have the opportunity to talk about what they have recently noticed in the patient's life. From there, we decide what to highlight during the appointment.

Diagnosing Parkinson's can take time and is not always easy. Can you explain how you diagnose PD? What are you looking for?

At this time, we do not have imaging or blood studies that definitively confirm a diagnosis of Parkinson's. Rather, the diagnosis must be taken in the context of the individual. This can be frustrating for both patients and families, but to me it is the beautiful part of neurology. We have to talk to our patients, examine them and monitor them over time.

If a neurologist notes that your response to medication is very typical and that you develop common PD symptoms (such as motor fluctuations or dyskinesias), the diagnostic accuracy is approximately 70%. The accuracy of diagnosing an ETM with these same criteria is approximately 80%.

As movement disorder specialists we see many patients, so we know what symptoms are typical in Parkinson's disease. Or if the symptoms don't seem to match Parkinson's, we can consider alternative movement disorders and send this individual for other testing.

What are the symptoms that are most invasive for patients' quality of life? How are they addressed?

There are many symptoms of Parkinson's that affect quality of life. Symptoms that affect mental health can be especially problematic. In Parkinson's, changes in the brain can increase the risk of anxiety and depression.

One of the challenges we face is that many people with PD who need mental health support grew up in a time when it was shameful to ask for help. If your family encourages you to seek help, it is not because they find you problematic, but because they hope you can get better. I encourage people experiencing these symptoms to seek help from mental health experts, because the landscape of medications and approaches available is very broad compared to decades ago.

Pain is another symptom that people do not usually associate with Parkinson's disease. Some patients present with pain before developing motor symptoms of PD. You may experience pain or discomfort due to stiffness and mobility problems. Palliative care principles have been introduced to treat Parkinson's disease because palliative care specialists are experts in helping to control pain.

Do you recommend exercise to your PD patients?

We have evidence that people with PD do better when they exercise. The baseline activity should be moderate intensity exercise five days a week, for about 30 minutes each day. Moderate intensity means that you are slightly short of breath when you do the activity and try to carry on a conversation.

When you exercise, be consistent and make sure you enjoy it. Try to vary the type of activity as well. You could ride the stationary bike twice a week, attend a boxing class twice a week, and join a hiking club in your neighborhood. This type of varied movement is good for the body, joints, and brain. Exercise is even associated with a lower risk of cognitive problems and dementia.

What led you to specialize in movement disorders?

I entered the movement disorders field with a bit of luck. During the last year of my residency, Dr. Anthony Lang, who is a luminary in movement disorders, asked me what he was going to do the following year. He had no plans, so he asked me to be his intern.

He had already developed an affinity for patients with movement disorders, especially people with Parkinson's disease. This was before deep brain stimulation was a treatment option. The patients were so brave and generous to us in our research; They were willing to help with any project that could shed more light on people with Parkinson's.

I liked knowing that no matter who walked through the door, I could help them feel a little better. This field has been a never-ending revelation to me about what I can learn about patient care.

What is it like to be an Asian woman in this field?

To give you an idea of how long I've been in this field, my membership number in the International Parkinson and Movement Disorders Society (IPMDS) is 96 [Currently, IPMDS claims to have 11,000 members ]. When I started my career, she was one of the few women in society and I think back then she was the only Asian woman.

I haven't had many models that look like me, but I have had models that embody the characteristics I hope to bring to my work. I always tell my students, "If you end up in a place of power, give someone who doesn't look like you a chance." It is very easy to choose someone who thinks and looks like us, but it is much more difficult to choose someone who thinks differently and is not like us.

Diversity of thought can help make great leaps in knowledge, especially when individuals step out of their comfort zone.

Why are you also interested in PD research? Can you summarize some of your work?

As academic neurologists, research is part of our job. I began my professional life as a clinical researcher focused on early drug studies for Parkinson's disease. Over time, I became interested in palliative care for Parkinson's.

After watching patients deteriorate after decades of living with PD, it broke my heart when other doctors said, "There's nothing more we can do for you." I felt like there is always something we can do for our patients. I began applying the principles of palliative care to Parkinson's patients in our movement disorders clinic.

I started as a lone voice in 2007, but there are now specialist clinics offering palliative care for people with Parkinson's. I am currently involved in a research project to initiate palliative care in all Parkinson's Foundation Centers of Excellence in the United States. I find this project incredibly rewarding and I hope that everyone who has participated now understands the benefits of palliative care.

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