Episode 155: The Evolution of the Parkinson’s Foundation Hospital Care Initiative
Of the one million people living with Parkinson’s disease (PD) in the United States, nearly one-third of them will have a hospital encounter each year. When hospitalized, three out of four people with PD will not receive their medications on time, possibly leading to worsening symptoms, medical emergencies, and a significantly increased length of stay, greatly increasing costs to the medical system overall.
To address this problem, the Parkinson’s Foundation developed key tools and resources for patients and providers as part of our Hospital Care Recommendations. Today’s guest, Peter Pronovost, MD, PhD, a major force in advancing hospital safety, helped develop these recommendations for making hospitals safer for people with PD, which includes standards of care. Dr. Pronovost practices critical care medicine and is Chief Quality Officer and Chief Clinical Transformation Officer at University Hospitals in Cleveland, Ohio.
Released: July 25, 2023
Peter Pronovost, MD, PhD, is a world-renowned patient safety champion, physician executive, critical care physician, prolific researcher with more than 1000 peer-reviewed publications, an innovator who has founded several technology companies, and a thought leader informing U.S. and global health policy.
Dr. Pronovost’s transformative work leveraging checklists to reduce central line-associated bloodstream infections has saved thousands of lives and earned him national acclaim. This life-saving intervention has been implemented across the U.S., and as a result, central line-associated infections that used to kill as many people as breast or prostate cancer have been reduced by 80 percent. In recognition of this innovation, his highest-profile accolades include being named one of the 100 most influential people in the world by Time Magazine and receiving a coveted MacArthur Foundation “genius grant.”
While serving as Chief Clinical Transformation Officer at University Hospitals Health System in Cleveland and as a Professor in the Schools of Medicine, Nursing and Management at Case Western Reserve University, Dr. Pronovost developed a checklist to make visible defects in value and deployed a management and accountability system to eliminate those defects.
This system reduced the annual cost of care for Medicare patients by 30% over three years while improving quality. In 2022, Dr. Pronovost lead the efforts that culminated in University Hospitals winning the American Hospital Association’s Quest for Quality award, the industry’s most prestigious honor recognizing its member organizations for their commitment to quality. He was named the Veale Distinguished Chair in Leadership and Clinical Transformation in 2023.
I’m Benjamin ‘B.J.’ Bement. I was diagnosed with PD in October 2013 at the age of 44.
I was employed at a chemical plant for 18 years. Leading up to my initial symptoms I had taken three rounds of strong steroids in 2012 in response to three health issues that include a pinched cervical nerve with neuropathy, severe bronchitis and an adverse reaction to blood pressure medication. I left work on New Year’s weekend unaware I would not be returning.
After the hives and swelling abated, my energy and stamina did not return. My fatigue grew worse. I could not walk more than 100 yards without feeling like I would collapse. I stabilized myself with a cane or hanging onto a shopping cart at the store. I was too weak to pass the pulmonary test to resume work.
I started an aggressive search for answers. Over the next 10 months, I would see 14 different specialists and make more than 100 visits to doctors’ offices or labs. I wouldn’t take, “I don’t know” for an answer.
My general practitioner took 14 vials of blood to conduct every test he could think of. They all came back negative. My cholesterol, blood pressure, blood sugar and everything else were okay for a man of my size.
About five months later, I picked up a CD, splaying my fingers out to grip the wide plastic case. My hand started wavering backward and forward. I immediately thought it was probably something neurological.
It took a couple of months to see a general neurologist. He pursued multiple sclerosis tests, which came back negative. He referred me to a movement disorders specialist (MDS) [a neurologist with specialized training], who ordered a DaTscan to ‘rule out Parkinson’s,’ but it was positive.
The MDS placed me on carbidopa/levodopa, which resulted in immediate improvement, confirming the Parkinson’s disease (PD) diagnosis. I was put on short term, then long term disability. Although I had good benefits, they wouldn’t last forever, so I hired a lawyer to handle my Social Security filing.
I entered the holiday season of 2013 without a path forward. I had a four-month pity party mourning the loss of my past life. After the last holiday and the last football game, I had nothing else to distract me.
I began to search online for answers. I stumbled across a support group on Facebook and commented on some posts. A wonderful person named Michelle Lane replied and invited me to Washington D.C. for a Parkinson’s Action Network conference and Hill Day. I had no idea what to expect and was scared to meet people who were further along than me.
After I arrived, I saw there was nothing to worry about. Over the next three days I saw many people with more advanced symptoms being extremely passionate, active and hopeful. This began my advocacy journey.
I have since worked with many organizations and committees. I am in my third year of serving on the People with Parkinson’s Advisory Council for the Parkinson’s Foundation, my first year on the newly formed Gulf Coast Chapter Board, and my fourth year as chair of Moving Day Baton Rouge.
I have many ideas that I would love to see take life. Although I have been in advocacy for almost 10 solid years, I feel I am just getting started.
I could not make this journey without my awesome wife Kelly, my family, my church family, my local PD support group members, and the Parkinson’s Foundation staff. Here’s to another 10 years of new beginnings.
New Medicare Study Finds Critical Gaps and Disparities in Access to Parkinson’s Care
Regularly seeing a neurologist can improve the lives of thousands of people with Parkinson’s disease (PD) each year. However, access to expert Parkinson’s care is not always easily available. A new Parkinson’s Foundation-funded study found that only 9% of Medicare beneficiaries with PD received care from a movement disorders specialist (expertly trained neurologists who can recognize PD’s distinct nuances and tailor treatments to each patient), while 50% saw a general neurologist.
The study identifies critical gaps in care for people with Parkinson’s in the U.S. Those with the greatest disparities in care are women, people of color (those who identify as Asian, Black, Hispanic and Native American) and residents of rural areas. Published in the official, peer-reviewed journal of the Parkinson’s Foundation, npj Parkinson’s Disease, the study analyzed 2019 U.S. Medicare data.
“By utilizing Medicare data from 2019 that represents 90% of people living with Parkinson’s in the U.S., this research provides not only the timeliest but the most comprehensive study of people with PD yet conducted,” said James Beck, PhD, senior author of the study and Parkinson’s Foundation chief scientific officer. “Our findings underscore that Parkinson’s specialists are not the main care providers for people with PD — it is the general neurologists and other clinicians. These professionals, and their patients, could greatly benefit from additional training in PD care.”
Study Findings
50% of people with PD receive care for the disease from general neurologists.
29% receive PD care from primary care providers.
Care access disparities persist for women, people of color, and residents of rural areas — each most likely facing additional challenges in receiving a diagnosis and treatment.
Although depression affects 53% of people with PD receiving Medicare, only 2% receive treatment from a mental health professional.
Medicare recipients with PD are not likely to access supplemental therapies — physical and occupational therapy, speech-language therapy and mental health services — with only 20% of individuals seeing a physical therapist, for example.
What do these findings mean for people with Parkinson’s?
There are only 660 movement disorders specialists who practice in the U.S., with a total of six in rural areas. There are one million people in the U.S. living with Parkinson’s.
Forty-one percent of people with PD on Medicare do not see a neurologist or movement disorders specialist. Prior research has shown that receiving care from a PD specialist leads to a better quality of life. These doctors know how to help people manage PD symptoms, screen for crucial symptoms like depression and anxiety, and can help personalize medication and treatment plans.
The Parkinson’s Foundation conducted this study to better identify how it can improve access to specialized PD care. As a result of this study, the Foundation is now expanding disease-specific training to general neurologists and other healthcare providers, and pursuing strategies that improve access to care across all demographic and population groups. The findings from the study will also support policy development and future research that dives deeply into access issues.
The vision of the Parkinson’s Foundation is for all people to have access to quality PD care. The Foundation oversees multiple initiatives aimed at better understanding and improving care, providing professional education opportunities and working to remove care barriers for people with PD. Learn more about how we are increasing access to care through our care programs.
The Urgency of Connecting People to Expert Care
Every year, 90,000 people in the U.S. are newly diagnosed with PD. Unfortunately, many navigate the disease alone for years. Receiving an accurate PD diagnosis can be half the battle, while the other half is finding quality PD care. Those who engage with healthcare professionals trained in PD in the early stages of the disease report better outcomes and quality of life.
The economic burden of Parkinson’s disease to individuals, families and the U.S. government reached $82.2 billion in 2024. Not only is expert care critical to living better with Parkinson’s, receiving care early on can reduce the economic burden of Parkinson’s drastically both on a personal and nation-wide basis.
The number of people with PD will continue to increase substantially in the next 20 years due to the aging population. That is why we are determined to educate healthcare professionals so that people with Parkinson’s will receive a diagnosis earlier, treatment sooner and better care. Our goal is for people with Parkinson’s actively avoid unnecessary complications, such as prolonged hospital stays, and live better with this disease.
How can I find expert care?
If you are living with or caring for someone with Parkinson’s, find PD care near you with these resources:
Use our In Your Area feature or call our Helpline at 1-800-4PD-INFO (1-800-473-4636).
Learn more about our Global Care Network, designated centers that provide PD care.
Talk to your PD doctor about building your care team to address your most troublesome symptoms. Learn more about building your care team.
Download the Hospital Safety Kit, designed to help you navigate a hospital stay — planned and unplanned.
For healthcare professionals: learn more about PD-tailored care at Professional Education.
Episode 153: How People with PD Can Prepare for Routine Outpatient Procedures
Since routine outpatient procedures may pose special needs and risks for someone with Parkinson’s disease (PD), extra planning is in order for the period before, during, and after the procedure. The procedures may be medical or dental, for example, teeth cleanings, colonoscopy, or magnetic resonance imaging (MRI).
Fortunately, the Parkinson’s Foundation has developed a course that highlights key recommendations and strategies to promote optimal care and health outcomes for people with PD during planned and unplanned hospital stays, which can include inpatient, outpatient, and emergency department hospital encounters.
In this podcast episode, movement disorders neurologist Muhammad Nashatizadeh, MD of the University of Kansas Medical Center in Kansas City, a Parkinson’s Foundation Center of Excellence, discusses how people with PD can incorporate this same safety protocol to ensure optimal outcomes when they plan for and have routine outpatient healthcare procedures.
Released: June 27, 2023
Dr. Muhammad Nashatizadeh completed his undergraduate biology degree in 1998 with highest honors as a University Scholar at Emporia State University. He completed his medical degree at the University of Kansas School of Medicine in 2003, internal medicine internship in Wichita in 2004, and neurology residency in Kansas City in 2007. He served as chief resident before pursuing movement disorder fellowship training at Baylor College of Medicine in Houston, Texas returning home to Kansas in 2008. He is board-certified in neurology by the American Board of Psychiatry and Neurology (ABPN).
Known as "Dr. Muhammad" by numerous patients, he worked as a community neurohospitalist for over six years while seeing clinic patients with movement or cognitive disorders. He returned to the University of Kansas School of Medicine as faculty in 2015 and has been the Director of Inpatient Movement Disorders since 2017. Primarily covering the inpatient consultation service, he works with emergency medicine, internal medicine, rehabilitation and surgical teams to help manage neurological problems affecting hospitalized patients. He educates geriatrics fellows, residents from neurology, internal medicine and psychiatry, and medical students to understand how medical disorders affect patients neurologically and how multiple problem layers cumulatively contribute to illness. For these efforts, he was voted as the Neurology Educator of the Year (Student Voice Award) by third year medical students for four years straight and selected as a top five finalist for the prestigious Rainbow Award in 2018-2019 honoring altruism, excellence, and professionalism.
My journey with Parkinson’s disease (PD) began at age 65, when I received a PD diagnosis. Doctors believe I had Parkinson’s for about four years prior to diagnosis. One chapter of my PD journey concluded with deep brain stimulation (DBS) surgery followed by programming and meeting with my neurosurgeon. My goal is to continue to enjoy adventure travel, cycling, photography and playing music with friends for as long as possible. There’s no doubt that DBS will add years of quality time to my life.
I began writing poetry as a catharsis for dealing with the disease and treatments. Up until my diagnosis, I had never written or even been particularly interested in poetry. Looking back, my brain’s response to the stress and adversity emerged in the form of poems that created an emotional vocabulary to express the disease at a visceral level. I never intended to share these poems with anyone.
Having come through the other side of the DBS process, and at the request of my neurosurgeon Dr. Kendall Lee, I felt it was important to share my work to give others a real understanding of the process of treating Parkinson’s with deep brain stimulation. This experience inspired me to write a book titled No Turning Back: Journey from PD Diagnosis to DBS Surgery. The goal of the book is to change antiquated perceptions about DBS as a treatment of last resort for people with PD.
I had the good fortune of working with Mary GrandPré, whose talent and artistry interpreted my words and infused a level of visual emotion beyond my imagination. I hope you will find this writing to be honest, raw, vulnerable and accessible. This is one patient’s experience with DBS.
I have also connected with the PD community through volunteering for the Parkinson’s Foundation. My daughter, wife and I volunteered for Moving Day Twin Cities in Minnesota. It was a great experience that we plan to repeat for years to come. We are also hosting a No Turning Backbook launch event at the Walker Art Center in Minneapolis, with all ticket and book sale proceeds going to the Parkinson's Foundation.
Is there a cure for Parkinson’s disease? How is it treated?
Dr. Joseph Jankovic 00:00:07
Parkinson's disease is certainly one of the diseases where a cure has not yet been found. That does not necessarily mean that Parkinson's disease is not a treatable disease. It clearly is a treatable disorder, and we can treat it in different ways. We can treat the symptoms of Parkinson's disease. There are many medications that have been proven to be very effective and safe in the treatment of symptoms of Parkinson's disease, particularly the dopaminergic drugs, drugs that stimulate the dopaminergic system. Levodopa is the best example. It replaces dopamine, which is the neurotransmitter that is missing in the brains of patients with Parkinson's disease. Then there are drugs, so-called dopamine agonists, that stimulate the dopamine receptors.
Dr. Joseph Jankovic 00:00:55
They can also improve the symptoms of Parkinson's disease. There are certain medications that we have found delay the progression of the disease and may in fact be disease-modifying drugs. These medications include, for example, monoamine oxidase inhibitors such as selegiline or rasagiline. It has been shown that early introduction of these medications in the initial phase of the disease may delay the need for levodopa, which is the main medication that we use for Parkinson's disease.
Dr. Joseph Jankovic 00:01:34
Our goal in the therapeutics of Parkinson's disease, of course, is to develop truly neuroprotective drugs, drugs that actually protect the dying neurons and protect the brains from developing the dopamine deficiency.
Dr. Joseph Jankovic 00:02:15
Another form of therapy that is very important in more advanced stages of Parkinson's disease involves surgery, particularly deep brain stimulation. This is usually reserved for patients who respond to levodopa but, as a result of chronic levodopa therapy, have developed side effects such as motor fluctuations and involuntary jerking movements, called dyskinesia.
Treatment may include things that you do yourself, such as exercise, or things that you do with oversight, such as physical therapy, occupational therapy, and speech therapy or talk therapy. It may also include medications specific to your needs, such as medications aimed at improving your movement, and others aimed at improving non-movement symptoms such as constipation, urinary dysfunction, or sleep. The treatment of Parkinson’s is often best served via a team approach, with you – the person with PD – at the center and incorporation of your care partner, healthcare provider, therapists and other healthcare providers who treat specific symptoms of Parkinson’s.
Este libro ha sido diseñado como guía práctica para explicar el proceso completo recomendado para las personas con Parkinson y las familias que consideran una terapia quirúrgica. El contenido explora todo desde la decisión de someterse a la cirugía, hasta el día de la cirugía y su recuperación. Si bien la información de este libro pretende facilitar una discusión sobre las opciones quirúrgicas con la familia, los amigos y el equipo de cuidado de la salud, no pretende sustituir la asesoría de los expertos en la materia, a cargo de su cuidado.
How a Neurologist is Using Data to Make Parkinson’s Research and Care More Inclusive
Life with Parkinson’s disease (PD) is unique to every person. The journey to a diagnosis, symptoms and disease progression varies. Roshni Patel, MD, MS, believes that diverse and inclusive care practices and research recruitment are key to ensuring access to quality care for everyone, and to learning more about PD.
“There has been a push for more diverse and inclusive patient recruitment in Parkinson’s research studies,” Dr. Patel said. “And that push actually led me to a subtopic I've become very interested in – LGBTQ+ health and neurology. Not much is known about LGBTQ+ health in Parkinson’s. People with Parkinson’s have high rates of mood disorders, depression and anxiety, and it’s also been shown that LGBTQ+ patients with other neurological disorders have high rates of those symptoms, so I wanted to see if LGBTQ+ people with Parkinson’s may be at a higher risk for mood disorders.”
During her movement disorders fellowship at Rush University Medical Center, a Parkinson’s Foundation Center of Excellence, Dr. Patel reviewed recent self-reported survey data where she looked at the movement and non-movement symptom burden among LGBTQ+ people with Parkinson’s. This is one of the first studies looking at Parkinson’s symptom burden for LGBTQ+ people and could inform care practices for this population. She recently submitted her findings and is awaiting publication.
During her fellowship, Dr. Patel became interested in epidemiological research (the study of diseases as they relate to populations), where she used large datasets to answer questions. In her current role as a neurologist at Jesse Brown VA Medical Center, Dr. Patel splits her time between seeing patients and conducting research. While she has access to the VA system’s robust clinical database, she is excited to see the current trend in research is making more data open access.
“The move to make more data available for any researcher to access and analyze is really promising,” she said. “It offers the chance for new people to take a look and possibly see new things that the original researchers might not have thought about or looked at. It can hasten discoveries and makes things more transparent.”
She also believes that genetic studies of Parkinson’s, like PD GENEration: Mapping the Future of Parkinson’s Disease, can make a big impact. “Access to data from a big genetic cohort will be amazing,” she said. “I think that data will speed up the rate of discovery in terms of identifying genetic risk factors.”
Lately, through patient visits, Dr. Patel has noticed a trend of increased telehealth neurology opportunities. The ability to see a movement disorders specialist virtually improves inclusivity since it simplifies access to care. One program she is excited to get more involved with offers telehealth neurology visits to veterans in rural areas who do not have access to a neurologist. Participants wear a device similar to an accelerometer that measures their movements and generates a report that helps their doctor see their movement response to their medications.
“This program will be a good proof of concept to show that in a cohort of telemedicine-only Parkinson’s patients, a doctor could manage their movement Parkinson’s symptoms with a remote body-worn sensing device that provides objective data. Something like this has the potential to greatly increase access to care.”
Dr. Patel credits her Parkinson’s Foundation fellowship for her deep interest in leveraging data to find Parkinson’s disease trends and information that can be helpful for doctors and people with PD — along with her passion for improving inclusivity in PD research and care.
“This unique two-year fellowship gave me time to both care for patients and develop a research interest and learn more about the research process,” she said. “Research fellowships need funding. The Parkinson’s Foundation is essential because it allowed Rush to provide that fellowship to me.”
The Parkinson’s Foundation is proud to provide several types of grants that encourage young clinicians and researchers like Dr. Patel to devote their talents to the study of Parkinson's disease.
8 Questions You’ve Always Wanted to Ask a Movement Disorders Specialist
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.
Board Member Since 2021
Dr. Janis Miyasaki is a Professor of Neurology and Medicine at the University of Alberta. She previously worked at the University of Toronto for 22 years, where she founded the world’s first Palliative Care Program for Parkinson’s Disease and Related Disorders. Dr. Miyasaki currently serves as Vice President of the Board of Directors of the American Academy of Neurology. She is the first director of Equity, Diversity, and Inclusion for the Department of Medicine at the University of Alberta and has held leadership positions at the International Parkinson Disease and Movement Disorder Society and the Parkinson Study Group.
For help finding a movement disorders specialist near you, contact our Helpline at 1-800-4PD-INFO (1-800-473-4636).
