Movement disorders specialists (MDS) are neurologists who specialize in conditions such as Parkinson's disease (PD) and have experience treating PD at every stage. Janis Miyasaki, MD, is a movement disorders specialist and Professor of Neurology and Medicine at the University of Alberta. We asked Dr. Miyasaki to delve into the doctor’s side of the Parkinson’s experience.
Why is it important to see a neurologist rather than a primary care doctor for Parkinson’s?
The average family doctor will see less than five people with Parkinson's disease in their entire career. That doesn't allow them the comfort level of seeing a patient, diagnosing them and guiding them through PD stages to help them maximize their quality of life.
A neurologist specializes in illnesses of the brain, spinal cord, muscles and nerves, which includes Parkinson's disease. A neurologist also spends four to five years in residency to obtain this expertise, which means they have a lot more opportunity to see these patients over time. They can look at the advanced therapies that have been developed in recent years to improve life for people with PD.
How do movement disorders specialists collaborate with other members of the PD care team?
Movement disorder neurologists, first, collaborate with the patient and their family. People often don't think of a spouse or family member as part of the care team, but in my mind, they are the most important members of the care team. Care partners are a second set of eyes to observe symptoms and they can help advocate for their loved one.
Then there's the traditional team. Most movement disorder clinics will include nurses who have spent their career involved in the care of Parkinson’s patients. This gives them an expertise to problem-solve in between neurology visits and reinforce messages from the care team.
We often work alongside physiotherapists and occupational therapists. As an MDS, I communicate with these specialists because they might see a symptom or challenge that we may not have seen in the clinic visit. Many units also have speech language pathologists, who help with speech and swallowing as they relate to Parkinson’s, as well as dietitians who can assist with symptoms like constipation.
It's important that the team is always communicating, so everyone is on the same page about how we can best help our patients. In my clinic, every morning we check in to discuss the patients we'll be seeing that day. Everyone on the care team has an opportunity to talk about what they have noticed recently in a patient’s life. From there, we decide what to highlight during the visit.
Diagnosing Parkinson’s can take time and not always be cut and dry. Can you walk us through how you diagnose PD? What are you looking for?
At this point, we do not have imaging or a blood test that definitively confirms a Parkinson’s diagnosis. Rather, the diagnosis needs to be taken in the context of the person. This can be frustrating for patients and families, but to me, this is the beautiful part of neurology. We have to talk to our patients, examine them and follow them over time.
If a neurologist notices your response to medication is very typical and that you develop common symptoms of PD (like motor fluctuations or dyskinesia), the accuracy of diagnosis is about 70%. The accuracy of diagnosis for an MDS with those same criteria is about 80%.
Movement disorders specialists see a lot of patients, so we know which symptoms are typical in Parkinson’s disease. Or if the symptoms don’t seem to be consistent with Parkinson's, we can think about alternative movement disorders and send this person for other tests.
What symptoms do patients find most invasive to their quality of life? How do you address them?
There are many Parkinson’s symptoms that affect quality of life. Symptoms that impact mental health can be particularly problematic. In Parkinson’s, changes in the brain can increase the risk of anxiety and depression.
One challenge we face is that many people with PD who need mental health support grew up in an era where it was shameful to ask for help. If your family is encouraging you to seek help, it's not because they find you bothersome — it’s because they hope that you can be better. I encourage people who are experiencing these symptoms to seek out help from mental health experts, because the landscape of medications and approaches available are vast compared to decades ago.
Pain is another symptom that people often don't associate with Parkinson's disease. Some patients present with pain before they develop movement symptoms of PD. You may experience pain or aching as you notice stiffness and mobility problems. Palliative care principles have been introduced to treat Parkinson's disease because palliative care specialists are experts in assisting with pain control.
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 per week, for about 30 minutes each day. Moderate intensity means you're slightly short of breath when you're doing the activity and trying to carry on a conversation.
When you exercise, keep it consistent and make sure you enjoy it. Try varying the type of activity as well. You could ride on the exercise bike twice a week, attend a boxing class twice a week and join a walking club in your neighborhood. This type of varied movement is good for your body, your joints and your brain. Exercise is even associated with a decreased risk of cognition problems and dementia.
What made you decide to pursue movement disorders as a specialty?
I entered the movement disorders field with a little bit of luck. During the last year of my residency, Dr. Anthony Lang, who is a luminary in movement disorders, asked me what I was doing the coming year. I didn't have plans, so he asked me to be his fellow.
I had already developed an affinity for movement disorders patients, especially people with Parkinson's disease. This was before deep brain stimulation was a treatment option. The patients were so brave and giving to us in our research; they were willing to help with any project that might shed more light on people with Parkinson's.
I enjoyed knowing that no matter who walked through that door, I could help them feel a bit better. This area has been a never-ending revelation to me about what I can learn about patient care.
What is it like being 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 [Today, IPMDS states they have 11,000 members]. When I started my career, I was one of the few women in the society, and I believe I was the only Asian woman at the time.
I have not had a lot of role models who look like me, but I have had role models who embody the characteristics that I hope to bring to my work. I always say to my students, “If you get to be in a place of power, give a chance to someone who doesn't look like you.” It's so easy to choose someone who thinks and looks like us, but it’s much harder to choose someone who looks and thinks differently.
Diversity of thought can help make great leaps in knowledge, especially when people stretch outside of their comfort zone.
Why are you also interested in PD research? Can you summarize some of your work?
As an academic neurologist, research is part of what we do. I began my career as a clinical trialist 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 physicians would say, “There's nothing more we can do for you.” I felt that there is always something that we can do for our patients. I started applying palliative care principles to Parkinson’s patients in our movement disorders clinic.
I started as one lonely voice in 2007, but now there are dedicated clinics that provide palliative care to people with Parkinson's. I’m currently involved in a research project to initiate palliative care at all the Parkinson’s Foundation Centers of Excellence in the U.S. I find this project to be incredibly rewarding, and I hope that everyone who participated now understands the benefits of palliative care.
For help finding a movement disorders specialist near you, contact our Helpline at 1-800-4PD-INFO (1-800-473-4636).