Just as physical health is affected by lifestyle and exercise, so is your mental health. Cognition, mood and sleep all play integral roles when it comes to maintaining proper mental health.
Most people living with Parkinson’s disease (PD) experience changes and symptoms that impact cognition, mood and sleep as time goes on. Some people even experience cognition, mood and sleep symptoms as early PD signs. Below we highlight tips for how to support your mental health with changes in your cognition, mood and sleep.
Cognition Tips
Cognition is the act of mental processing. While tremors are a recognizable PD symptom, Parkinson’s may also impact cognition. Cognitive changes can include shifts in your thinking and behavior, along with slowness in memory. This non-movement symptom can impact quality of life. It can be scary to experience cognitive changes, but there are ways to support your mental health:
Create coping strategies like developing a routine and staying engaged with fun hobbies.
Find a counselor to help you adjust to these changes. You can see a counselor individually or with your care partner.
Everyone experiences mood changes; however, Parkinson’s can influence mood as a non-motor symptom. Mood changes may negatively affect your social life and emotional well-being. They may include depression, anxiety and other mood-related changes. Your mood may be affected by major life changes or medication. It is important to evaluate your mood and mental health. We have tips to help support you through these mood changes:
Create an exercise plan to support your emotional and physical health.
Connect with those around you to provide social support. Attend a support group and build your community — try attending a local PD event by using our In Your Area search tool.
Talk to a mental health professional who can help you process mood changes.
Focus on your nutrition. Eating healthy is important for helping manage Parkinson’s symptoms and optimizing PD medications.
Talk to a doctor about a treatment plan, especially if your mood changes are associated with pain.
Sleep is a vital part of mental health; our bodies and minds need rest. Parkinson’s can often affect your ability to sleep and daytime alertness. Sleeping problems may be the result of sleeping disorders like insomnia and sleep apnea. Your mental health may be affected by unhealthy sleeping patterns. Here are five tips that can help with sleep and Parkinson’s:
Set a schedule around sleep: avoid naps and try to set a consistent sleep pattern.
Practice exercise to get your body moving and ready for rest.
Avoid using electronic devices right before sleep.
Set aside time to relax intentionally as you get ready for bed. Avoid doing things that cause stress.
Discuss sleep issues with your doctor and healthcare team.
Although changes in your cognition, mood and sleep may feel overwhelming, you are not alone. It is very important to care for your mental health. The Parkinson’s Foundation has many resources to support you through these changes.
Tackling Disparities in PD Care: A Movement Disorder Specialist’s Story
For Lynda Nwabuobi, MD, a movement disorder specialist at New York-Presbyterian/Weill Cornell Parkinson’s Disease and Movement Disorders Institute, patient care is as much an art as a science.
Dr. Nwabuobi, whose specialized training was supported through a Parkinson’s Foundation Movement Disorders Fellowship, delivers compassionate, individualized care to her patients while also engaging in clinical research. The Parkinson’s Foundation believes in increasing access to specialized care for people with Parkinson’s and continues to do so through funding clinical fellowships and grants.
“I had an excellent fellowship — the availability of the grant to the university allowed me to benefit from exceptional training,” said Dr. Nwabuobi. “I was surrounded by some of the greatest minds in Neurology, and it has helped my career because it opened my mind to a lot of possibilities.”
Dr. Nwabuobi’s patients with Parkinson’s disease (PD) benefit not just from her expertise, but also from her passion for clinical research, which heavily focuses on documenting and addressing the root causes of healthcare disparities. Getting to know and better understand the needs of her patients in the clinic also inspires new directions in her research.
“Having such a large practice, you truly get to see what people with PD and their family members are dealing with,” said Dr. Nwabuobi. “It shows you what the gaps in care are, and points to ways that we can make things better today.”
A prime example is rooted in Dr. Nwabuobi’s observation that women with PD are more likely to come to her clinic alone. “In my previous research work, I examined sex disparities in homebound PD patients,” said Dr. Nwabuobi. “We found that women with PD who are homebound are more likely to be alone and less likely to have access to a neurologist. In addition, loneliness affects morbidity and mortality. This tells me that women, especially those who are homebound, are a group of patients that I need to pay closer attention to; we have to do better for them.”
During Dr. Nwabuobi’s Neurology residency, she led a study on care disparities between the majority-white, privately insured patients seen at the main hospital clinic of New York University (NYU) vs. the racially diverse, multicultural community of patients seen at the nearby public Bellevue hospital clinic, many of whom were uninsured. Both sets of patients saw the same specialist, and in fact, public hospital patients saw their doctors at a more frequent rate than the main campus patients, yet still experienced disadvantages in care.
Differences noted included reduced access to physical therapy, certain beneficial medications, and deep brain stimulation surgery for the public hospital group. This research was highlighted in the Journal of Cross-Cultural Gerontology in the article titled, “Racial and Social Disparities in Health and Health Care Delivery Among Patients with Parkinson’s disease and Related Disorders in a Multicultural Clinic Setting.”
"I am passionate about creating access to better care to marginalized communities and bringing more diversity to the clinic. I am very much affected when I see that people get different treatment based on the color of their skin, whether or not they are insured, or what language they speak. People are becoming more aware of the effects of racism in healthcare. My greatest hope is that we will live in a world that provides equitable care for everyone."
- Dr. Nwabuobi
At her Columbia University clinic during her fellowship, where over 80% of her patients were white (despite the racially and ethnically diverse community surrounding the hospital’s campus), Dr. Nwabuobi decided to take action to encourage marginalized people to seek the hospital’s neurological resources.
“I had an idea to set up a table at the community farmer’s market in Washington Heights as a way of creating awareness about PD and available resources,” said Dr. Nwabuobi. “I call it “Neurology at the Market!” I found that farmer’s markets are a good way to get into communities. This year, I expanded the effort, and I had my residents and medical students involved. It has been very successful!”
“Dr. Nwabuobi’s work embodies the Foundation’s belief that all people deserve quality care, and that may require us to think outside the box,” said Juanita Pharr, Director of Clinical Affairs at the Parkinson’s Foundation. “The benefits of Dr. Nwabuobi’s approach to clinical engagement for her patients and the wider community she shares, truly highlights why the Foundation is dedicated to supporting specialized training.”
Dr. Nwabuobi reflected on the Foundation’s resources and impact on her patients: “All the programs that Parkinson’s Foundation offers are helpful to my patients — especially virtual programs. Our biggest goal in the field is raising awareness. The current work of the Parkinson’s Foundation will create greater awareness.“
Thanks to the passionate people who help us raise funds, we make life better for people with Parkinson’s disease (PD), together. The strength and success of our 2021 community fundraisers translated to expansions in programs and resources that will keep the entire PD community connected and empowered in 2022 and beyond.
“Today, 87% of our revenue goes directly to critical research, care and education initiatives. We can only accelerate progress on these fronts thanks to our volunteers and fundraisers,” said Kayln Henkel, Parkinson’s Foundation Senior Vice President and Chief Development Officer. “The energy and enthusiasm of our Parkinson’s Champions, Moving Day participants and Parkinson’s Revolution riders brings us hope.”
Meet some of our fundraisers and volunteers who inspire us:
Alexandria Rides for Her Dad
“Living away from my dad I wanted to educate myself... I began using Parkinson.org as a resource, and then saw the opportunity to pair what I love doing — working out — and getting others educated through Parkinson’s Revolution.”
“At some point everyone is going to go through this life and have something bad happen to them… My response is trying to raise money to help the people who will develop this disease.”
“Each year, in the morning, after set-up is done and the volunteers are all in place, there is a quiet moment at sunrise. It is then that I always feel the presence of my grandfather.”
“Some of the brightest minds on earth are working around the clock to continue progress on advances towards a cure. This is why running with Parkinson’s Champions and continuing to raise awareness is so very important.”
Since 2011, Moving Day events have raised $35 million that directly funds our mission. Through do-it-yourself events, Facebook fundraising and endurance events, Parkinson’s Champions have raised nearly $15 million since 2008. In our newest fundraising program, Parkinson’s Revolution, riders generated awareness through in-person and virtual cycling events. Together, every volunteer, donor and person who attends these events brings us closer to a cure.
The way dopamine is released and how it influences other cells (called neurotransmission) is a critical factor in understanding how Parkinson’s disease (PD) affects the brain. The influence of dopamine is also critical for motor and reward, or reinforced, learning.
New York University’s Margaret Rice, PhD, has worked to understand dopamine neurons and their role in movement for decades, bringing new insights and understanding to Parkinson’s as well as a host of other neurological conditions and movement disorders.
The Parkinson’s Foundation caught up with Dr. Rice to discuss her research at the Rice Lab at New York University. She described the impact of the Parkinson’s Foundation early grant supporting her research and her hopes for encouraging a new generation of scientists to focus on Parkinson’s.
I was really interested in dopamine because it’s such a fascinating molecule. My research seeks to understand why dopamine neurons, the ones in the substantia nigra [the area of the brain that produces dopamine], are selectively vulnerable — it's a fascinating question, but also really important.
Can you describe the role of dopamine in understanding Parkinson’s?
Dopamine “wears” two main hats:
As a conductor, orchestrating in movement — acting through substantia nigra dopamine neurons in the midbrain, which degenerate in Parkinson's
As a motivational speaker, promoting motivation and reward — acting through nearby ventral tegmental area dopamine neurons
It makes sense that there are loops between these cell groups and that they're right next to each other, because movement and motivation are inextricably linked and dopamine neurons facilitate both processes.
I became particularly interested in somatodendritic dopamine release, which is an unusual way for neurons to communicate with each other. Typically, neurons extend long connections to release dopamine in a location called a synapse. However, the dopamine neurons in the midbrain not only make traditional connections but they also release dopamine directly from the cell body to influence their own activity, and possibly that of their immediate neighbors. My grant proposal was focused on studying that release process using carbon fiber microelectrodes (conductors) to detect dopamine release in brain slices.
The Foundation’s funding allowed me to pivot my research. I was able to use preliminary data from this work to get a National Institutes of Health (NIH) grant and I have had continuous funding since then to study dopamine. Our most recent work is addressing fundamental questions about this dopamine release. This work was published in 2021, so the trajectory has been onward and upward since that funding from the Foundation, which came at a crucial moment.
You have been dedicated to Parkinson’s research for 20 years. How has the impact of your work helped the PD community better understand this disease?
If you don't understand how something works, you're not going to be able to fix it. So, you have a cell phone and suddenly it doesn't turn on. Why? If you don't understand that you need to be charging it regularly, that it has a battery, it's useless for you.
A lot of our work is basic science. Understanding how this process of dopamine released by dopamine neurons happens is important. There is a dopamine toxicity theory of Parkinson's disease, for example, that theorizes that dopamine can oxidize [a chemical reaction], which can be toxic to cells and may contribute to the selective degeneration of dopamine neurons. Understanding factors that regulate dopamine release and uptake inside cells and understanding which aspect of this process might go awry and contribute to a degenerative process — all of this is critical in understanding Parkinson’s.
I continue to believe that this should be one of our most important missions — to help new investigators get seed money for bigger funding, but also to engage them in the Parkinson's field. We get fantastic proposals, and it would be great if those folks became interested in turning their attention to either fundamental neuroscience about dopamine, the basal ganglia function (brain structures responsible for motor learning) or disease processes. They are all important in moving the field forward.
What makes you most hopeful that we will reach an understanding of the disease that impacts people with Parkinson's?
The more we understand how circuits and cells of the basal ganglia function normally, the greater the chance of restoring that function. If we can understand how the components of this motor system work together, we could fill in a piece that may be broken even if we haven't fixed the cause.
Top Takeaways About Complementary Therapies and PD
People with Parkinson’s disease (PD) seeking to ease symptoms sometimes explore complementary therapies to support traditional treatments. Whether employing mindfulness to help manage pain or incorporating food as medicine, broad-ranging supplemental wellness strategies can boost well-being. Learn what to consider when exploring these therapies and how to work with your care provider for peak outcomes.
This article is based on Conversations About Complementary Therapies and PD, a Parkinson’s Foundation Expert Briefings webinar exploring treatments sometimes used together with medicine, presented by Natalie Diaz, MD, Neurology, Pacific Movement Disorders Center, Pacific Neuroscience Institute.
Up to 40% of people with Parkinson's in the U.S. incorporate complementary therapies into their self-care.
Advances in Integrative Medicine
Up to 40% of people with Parkinson's in the U.S. incorporate complementary therapies into their self-care.
There are more than 20 available prescription medications available today to treat Parkinson's symptoms. Complementary therapies are supplemental wellness products or strategies sometimes used alongside conventional medicine to alleviate the non-motor symptoms of Parkinson's, such as stress, nausea or constipation, or to improve sleep or well-being. Research shows up to 40 percent of people with Parkinson's in the U.S. incorporate complementary therapies into their self-care.
Integrative medicine — where medical providers combine traditional medicines and complementary therapies in a person's care — is also thriving. Doctors and healthcare experts can now receive board-certified integrative medicine fellowship training. A 2020 study found more than 50 percent of primary care physicians have recommended complementary therapies.
Data shows geographic differences in the use of complementary therapies. Americans tend to incorporate vitamins, dietary supplements and herbs and botanicals. Europeans and Scandinavians rely more on body-based practices, such as yoga and massage. Traditional medical systems in Asian and African countries incorporate a combination of all these practices.
There is also a socioeconomic gap in complementary therapy adoption – with people of greater incomes tending to use them. Many such treatments can be costly and are rarely covered by insurance.
Types of Complementary Therapies
Exercises, like Tai Chi and yoga
Vitamins and Supplements
Acupuncture
Meditation
Healthy Foods
Medical Cannabis
And more!
Benefits of Mind-body Wellness Practices
Types of Complementary Therapies
Exercises, like Tai Chi and yoga
Vitamins and Supplements
Acupuncture
Meditation
Healthy Foods
Medical Cannabis
And more!
Studies show mindfulness practice has physical and mental benefits. People with PD use mindfulness meditation to ease pain, minimize stress, increase focus and boost mood.
Other mind-body wellness practices proven to reduce stress and ease many symptoms of Parkinson's include exercises such as yoga and Tai Chi. These can lessen stiffness, increase flexibility and awareness of movement, and improve alignment, posture and core strength.
Acupuncture, where thin needles are placed at specific body points, is also sometimes used to alleviate PD pain. It's important to work with a qualified, skilled practitioner. Practitioners of reflexology, another mind-body technique, manipulate areas of a person's body to ease stress and aid digestion. As with exercise, effectiveness of these complementary therapies requires regular practice.
Making Sense of Supplements: Proceed with Caution
Despite the eagerness to incorporate supplemental strategies to live well, research shows more than half of Americans using complementary therapies don't consult their doctors before or during use. Open discussion with your care provider can uncover potentially serious side effects, prevent prescription medication interactions and ensure optimal outcomes.
Prescription medications go through rigorous U.S. Food and Drug Administration (FDA) approval processes to monitor and log potential adverse effects. However, alternative therapies such as nutritional supplements are instead regulated by the FDA as food, rather than medication. Although some companies use third-party verification to vet the supplements they sell, ingredients and dosages in over-the-counter vitamin, herb and dietary supplements can vary greatly. Be sure to seek a quality source.
Much of the science around nutritional supplements, herbs and botanicals is limited and inconclusive. Though some substances hold promise, more studies are needed.
Vitamins and supplements studied for complementary therapy by people with PD include:
Vitamin C – antioxidants that may protect brain cells.
Coenzyme Q10 – dosages of up to 2,400 mg daily are shown to be safe and well-tolerated, but there's currently no evidence of clinical benefits. This supplement interacts with blood thinners and aspirin. It can promote blood clotting and lower blood pressure.
Creatine – while studies currently show no effect on PD progression or symptoms, this supplement might possibly boost mood.
Vitamin E – one study shows this vitamin failed to stop Parkinson's progress. It can increase bleeding risk and interact with blood thinners and aspirin.
Glutathione – studied in oral, injected and intranasal formulations to show no PD benefit.
Omega-3 fatty acids – 1,000 mg of flaxseed oil and 400 IU vitamin E may decrease inflammatory markers and improve motor function. However, it can cause gastrointestinal and neurological side effects.
CDP-choline(cytidine diphosphate) studies show taking 400 mg three times daily may lower levodopa dose.
Phosphatidylcholine studies show using 100 mg three times daily can improve mood and motor function but can interact with other medications.
Resveratrol caninteract with aspirin, blood thinners and anticoagulants. It can also cause mild estrogenic activity.
Beta carotene can cause skin pigmentation.
Vitamin A might create nausea, dizziness and headaches.
Vitamin B3/Niacin can bring on facial flushing and tingling.
Vitamin D3 can lower the effect of statins and elevate blood calcium level when taken with certain diuretics.
Herbs and botanicals investigated for effectiveness in PD are:
Gallic acid
Ginseng
Gingko biloba – shown to cause headache, stomach upset, palpitations and constipation, and can interact with many medications, including blood thinners.
Curcumin, which might cause nausea or diarrhea.
Green, black and oolong teas (camellia sinensis) cancause weight loss, nausea, rash, jitteriness or liver toxicity.
Epigallocatechine-3-gallate (EGCG),can create dizziness and low blood sugar.
Lion’s mane (Hericium erinaceus) can increase bleeding and interact with blood thinners.
Milk thistle can cause abdominal bloating, diarrhea and loss of appetite. It also may lower blood sugar in people with diabetes.
Quercetin can cause headache and nausea.
Vincamine can cause low blood pressure, sedation and irregular heartbeat.
Red clover can cause headache, nausea or muscle aches or estrogen-like effects including bloating, weight gain or tender breasts.
Nutritional supplements potentially useful for Parkinson's include:
Melatonin, which may ease sleep-onset insomnia and dream enactment.
Chamomile or passionflower – to promote sleep and ease anxiety.
Valerian root might also promote sleep, but some people can experience headache, stomach upset and mental fog.
Ginger may help with indigestion, but can cause heartburn and diarrhea.
Peppermint oil might also help with indigestion.
Flaxseed or flaxseed oil might ease constipation.
Cranberry extract – may reduce the risk of recurrent urinary tract infections.
Mucuna Pruriens (velvet bean)
Seeds of mucuna pruriens, a legume found in tropical and subtropical areas, contain levodopa — the most powerful treatment for PD. Mucuna has been used in traditional medicine for millennia for a number of medical conditions. It's thought to have anti-inflammatory properties and may benefit diabetes.
It also might work as an antidepressant and has been documented in ancient texts to help what sounds like Parkinson's. A few studies compare this legume to traditional levodopa, however, more research is needed to explore its safety and long-term side-effects.
Cannabinoids
Cannabinoids are one group of hundreds of substances found in the cannabis sativa plant, known when dried as marijuana. There are more than 100 known cannabinoids.
Tetrahydrocannabinol (THC) is known for its psychoactive euphoric effects. Cannabidiol (CBD), another psychoactive, is associated with calming effects.
Medical marijuana is now legalized in more than 30 states, while recreational marijuana is legal in 15 states. Small studies have shown cannabis might have potential to ease some PD symptoms — such as anxiety, sleep disturbances, pain or gastrointestinal issues — but more research is needed to determine if there is any medical benefit.
Safety issues from use include potential medication interactions, delayed absorption and effects from edibles, and dangers of lung injuries from vaping. Side effects can also include low blood pressure, fatigue, dizziness, mood or cognitive changes, changes in balance, hallucinations and changes in weight.
The lack of quality control across products also has its dangers. No governing body regulates cannabinoid quality or labelling accuracy. Products can be contaminated with microorganisms, pesticides or other substances. Like nutritional supplements, studies show cannabinoid content differs between manufacturers and deviates from the label.
The Takeaway
Complementary therapies often focus on treating the whole person, rather than symptoms alone. They can inspire a sense of wellness or empowerment. Some therapies have even shown promise in Parkinson's studies, but research is still in the initial stages.
Discuss the pros and cons of any complementary therapy with your care team before beginning. When incorporating complementary therapies, only change one thing at a time. Monitor your progress. Noticeable changes can take time — give it anywhere from a few weeks to a month.
Explore the nonprofit U.S. Pharmacopeia (USP) scientific organization to discover supplement manufacturers who participate in USP's dietary supplement verification program. ConsumerLab.com also independently tests vitamins and nutritional supplements for quality and labelling accuracy.
Looking to amplify your wellness from home? The Parkinson's Foundation has everything you need to live better today. Join us weekly for PD Health @ Home.
April is Parkinson’s Awareness Month — a time to shine a light on Parkinson’s disease (PD) and share resources with the PD community. Whether that means navigating your own future with Parkinson’s or helping us create a world without PD, together we can make an impact on the #FutureOfPD.
The Parkinson’s Foundation is working toward a future where no one lives with Parkinson’s, and we want you to be a part of it. Here are three meaningful ways you can help change the #FutureOfPD:
1. Future of PD Research
Research leads to breakthroughs in treatment that bring hope. Participating in research can help us provide improved care for all people with Parkinson’s today.
Genetic testing can be a powerful tool to uncover biological pathways that cause Parkinson’s. If you have a confirmed Parkinson’s diagnosis, you are eligible to participate in PD GENEration: Mapping the Future of Parkinson’s Disease. This research initiative offers genetic testing for clinically relevant Parkinson's-related genes and genetic counseling at no cost for people with PD.
Enroll today to help accelerate scientific research and improve our understanding of PD and potentially identify better treatment options for you and future generations.
2. Future of PD Care
Receiving specialized care makes a difference. Our Global Care Network guides the future of care by creating opportunities for people with PD to access high-quality care.
Comprehensive care is varied and not easily accessible for everyone living with Parkinson’s. The future of PD care involves closing the gap between those diagnosed with Parkinson’s and those receiving comprehensive care, information and support. Help us ensure that all people with PD have access to equitable and quality care — getting what they need, where and when they need it.
How are you planning to define your Parkinson’s future?
"For my PD future it's all about sustainability for my physical health. I'm going to keep working out and taking time for myself. Self-care is really important."
Neuro Talk: How Does Basic Research Get Us Closer to a Cure?
How can understanding the basic biology of Parkinson’s disease (PD) help us prevent Parkinson’s altogether? In our latest Neuro Talk, Parkinson's Foundation Chief Scientific Officer James Beck, PhD, discusses what basic research is and how funding researchers early in their careers can lead to scientific breakthroughs. He also highlights the role that Parkinson’s Foundation initiatives like PD GENEration: Mapping the Future of Parkinson’s Disease and Reach Further play in furthering PD research.
New Survey Highlights Telehealth as Long-term Alternative To In-Person Visits
When the COVID-19 pandemic began in 2019, alternatives to in-person doctor visits became necessary. Many in-person visits were moved to telehealth. In fact, a previous Parkinson’s Foundation survey found that telehealth use increased from 10% prior to the pandemic to 64% during the pandemic among people with Parkinson’s disease (PD). However, little is known about the attitudes of people towards telehealth.
To better understand the attitudes of people living with PD on telehealth use and satisfaction, the Parkinson’s Foundation and Columbia University Parkinson’s Disease Center of Excellence administered a survey. The survey was titled: Attitudes towards telehealth services among people living with Parkinson’s disease: a survey study.
This survey is important as it helps to understand the use of telehealth and quality among the PD community.
Survey Results
The survey was sent to 16,026 email addresses from the Parkinson’s Foundation and Columbia University Parkinson’s Disease Center of Excellence mailing lists. There were 944 complete survey respondents.
The average age for respondents was 71.5 years old, and the average time they have lived with Parkinson’s is seven years.
Experiences with Using Telehealth
Of the 944 completed survey responses:
90% of participants were aware of telehealth
83% used it at least once
In the last 12 months, respondents reported using in-person visits most frequently
Experiences with Telehealth Satisfaction
Overall, people with PD were equally satisfied with most services via telehealth in comparison to in-person visits. Of those who had a positive telehealth experience:
The highest telehealth satisfaction was for speech and language pathology appointments (79%) and mental health appointments (70%)
The biggest reasons for telehealth satisfaction: reduced travel time (46%), ease and convenience (22%), and the option for follow-up appointments (19%)
The top reasons people preferred in-person visits include:
Health care professionals could notice symptom changes better in-person
Appointments were more thorough (20%)
Important of sight and touch in a physical examination (20%)
“It is difficult for my doctor to really see my gait, movement responses etc. when I am not there in person,” one survey participant said.
Experiences with Telehealth Quality
The quality between telehealth and in-person visits was similar. It seems that visits that require a physical exam were more preferrable to be in-person. However, people with PD expressed that telehealth saved time, reduced travel, was convenient, and a good option for follow-up appointments. Overall, people with PD saw telehealth video visits to offer the same quality of care as in-person visits.
Key Takeaways
Telehealth satisfaction and use is perceived be a good alternative to in-person visits among people living with PD.
Telehealth may help alleviate patient burden, especially by reducing travel with decreased mobility.
While most type of provider visits were equally satisfactory in-person vs over telehealth, speech language and pathology and mental health visits were preferred via telehealth.
Among the participants, appointments that required physical examinations were preferred to be in-person.
Telehealth should remain an option in the future.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about telehealth and PD with the below Parkinson’s Foundation resources:
Reference
Feeney, M. P. et al. The impact of COVID-19 and social distancing on people with Parkinson’s disease: a survey study. NPJ Park. Dis. 7, 10 (2021).
How a Doctor is Removing Barriers Between Clinical Care and Research
William Dauer, MD, has had an impressive and impactful career in neuroscience. His groundbreaking research has focused on the molecular basis of dystonia (disabling, involuntary movements) and the mechanisms of neurodegeneration (lost brain cells) in Parkinson’s disease (PD).
We spoke with Dr. Dauer, who is also the inaugural Director of the Peter O’Donnell Jr. Brain Institute and Professor of Neurology and Neuroscience at the University of Texas Southwestern Medical Center, about his work, the early encouragement of the Parkinson’s Foundation funding, and his broader interests in breaking down silos between clinical care and research.
You began your career as a neurology resident and fellow in movement disorders at Columbia University more than two decades ago. How did the support from the Parkinson’s Foundation impact your early career?
It's exciting when you're just starting out to get funding. It's validating, important and so critical… those early career awards really can make a huge difference. The Parkinson's Foundation was a dominant force in enabling what my research would be, it would have been inconceivable without that support.
The Foundation funded an ecosystem of people: Bob Burke, Dave Sulzer, Serge Przedborski, Leo Stefanis. To us, as young investigators, knowing that there was some degree of support year after year and that people believed in you, it just made a world of difference. It made a lot of things possible and allowed me to do things I otherwise would not have done.
Many things in science don't work! That's part of becoming a scientist and for people who want to find the answer, that's their drive. Getting early career funding from the Foundation provides a degree of predictability and allows you to explore those ideas that are burning questions — which may be out-of-the-box thinking that wouldn’t necessarily be funded by the National Institutes of Health (NIH). It led to different things that we discovered that I think otherwise would not have been possible.
How did the Parkinson’s Foundation research grant help shape your investigations?
The Foundation was important in bolstering a basic scientific interest in PD research — it was important that they made that path possible. When I first received funding, it was the very beginning of what I would call the genetic discovery era for Parkinson's. Alpha synuclein was discovered as I was doing my fellowship: synuclein was really the first Parkinson-causing gene discovered.
The work we were able to pursue with Parkinson’s Foundation support enabled us to explore whether there was a relationship between that gene and the neurodegeneration caused by the Parkinson-related neurotoxin MPTP. These studies allowed us to discover that there is a relationship between environmental-type toxins and genetics, and that understanding provided a focus for future work. The Parkinson’s Foundation funding provided a set of questions that could be used to help guide research on synuclein itself.
All of that made a difference for me doing that work. There's a good chance I wouldn't have done that work had it not been for the early support of the Parkinson's Foundation. The Foundation support allowed me to pursue this work in an internationally recognized laboratory expert in the most cutting edge mouse genetic technologies needed to pursue these questions.
The grant fostered high quality work and the development of new science and young scientists, as I was at the time and increasing the degree of rigor and what's expected to advance the field. These things are related in ways that are hard to know. Encouraging scientists that do solid work, outstanding, rigorous work that engages and elevates the conversation, has impacts that are diffuse.
One of the most groundbreaking aspects of your career was learning about the causes of dystonia. Can you tell us about this?
Dystonia is an important symptom in Parkinson's, and it can be very disabling. It can, in some cases, be the cause for surgery and deep brain stimulation. My initial passion was dystonia for a variety of reasons, and it has been an enduring passion. The Foundation and the environment at Columbia very much contributed to this interest and, of course, also my clinical care.
The work that the Foundation initially funded was on a form of dystonia discovered at Columbia, together with researchers at Harvard, called DYT1 dystonia [a form of early onset dystonia]. The identification of a genetic form of “pure” dystonia allowed us to be able to look at this piece of the puzzle in isolation. The idea was if we can understand the mechanisms of what causes dystonia — that piece gives us a clearer picture of one of the pieces of the Parkinson disease puzzle.
What's become interesting is that by pursuing the DYT1 research we've developed evidence that dystonia is caused by abnormal functioning, and perhaps even some degree of degeneration, of a particular class of cells in the striatum [area of the brain]. The influence of that work contributed to a focus on these cells in a range of abnormal involuntary movements, including in dyskinesia and dystonia in Parkinson's. A lot of this was developed with that original funding. It's inspired others and influenced other Parkinson’s Foundation-funded investigators.
“Science and medicine are not separate, they are intertwined and nurturing that relationship, as the Parkinson’s Foundation is doing, is critical for the breakthroughs to which we all aspire.”
- William Dauer, MD.
What is next for you in terms of Parkinson’s research and care?
People with Parkinson’s face a series of unique challenges. My move to UT Southwestern to direct the O’Donnell Brain Institute is an incredible opportunity to take all the scientific and clinical knowledge and experience I was so fortunate to get through places like Columbia and Michigan. I will try to bring the lessons I've learned to bear on a larger scale to tackle these diseases.
I've had this parallel career: I've always seen patients and have had this passion for rigorous research that is informed by my understanding of the illness, and also the quality of care for those with neurodegenerative disease. Creating high-level clinical care connects to the research.
When you have engaged healthcare for patients, when you're doing the right thing, they come back because you're taking care of them and educating their families. That leads them to become advocates for research, and in some cases to participate directly in patient-centered research. Science and medicine are not separate, they are intertwined and nurturing that relationship, as the Parkinson’s Foundation is doing, is critical for the breakthroughs to which we all aspire.
Researchers are lasered in on slowing and someday stopping Parkinson's disease (PD) in its tracks. Explore what they've discovered, see what the future might hold and learn how some of the strongest weapons in the fight against Parkinson's progression are practices you can put in place today.
This article is based on Can We Put the Brakes on PD Progression, a Parkinson’s Foundation Expert Briefing webinar presented by Joash Lazarus, MD, Multiple Sclerosis Center of Atlanta.
PD symptoms stem from a protein, called alpha-synuclein, that clumps and accumulates in certain areas of the brain. This process depletes dopamine, which is critical to many body processes, including smooth, coordinated movements. Though dopamine declines for everyone who lives with Parkinson's, each person experiences disease symptoms differently.
But is there a way to slow Parkinson's progression? While scientists are evaluating everything from medications to mindfulness practice for clues, they've discovered some of the biggest benefits start at home.
Healthy Eating and Regular Exercise: A Powerful Combo
Making nutritious food the mainstay of your meals and enjoying regular exercise has countless proven benefits. Studies show targeted nutrition may slow Parkinson's advancement. Eating a whole-food, plant-based, Mediterranean-style diet — including fresh vegetables, fruit and berries, nuts, seeds, fish, olive and coconut oils and more — may be linked to slower PD progression.
When you live with PD, exercise is also critical to optimal health. In fact, the Parkinson’s Outcomes Project shows at least 2.5 hours a week of physical activity can slow PD symptom progression. Research reveals regular exercise also shows neuroprotective effects in animal models with Parkinson's.
Exercise benefits people of all ages. As people get older, their risk for falls increase. For people with PD, the chance of falls is two to three times higher. Up to half of these falls can result in major injury. Exercise is the only thing to notably minimize a person’s risk of falling. Regular physical activity can also boost balance, improve heart and lung function, increase memory, thinking and problem solving, minimize depression and more.
Here's how to make exercise work for you:
Maximize benefits by exercising moderately to vigorously 150 minutes a week.
Plan a weekly routine that includes aerobic activity, strength training, balance and stretching exercises.
Visit a physical therapist with Parkinson’s expertise for a functional evaluation and exercise recommendations.
Reference this Parkinson’s Exercise Recommendations PDF in English or Spanish to help guide your physical activity plan.
Specialized Parkinson's movement and speech therapies, such as the Lee Silverman Voice Treatment (LSVT) BIG and LOUD programs, have also shown potential to lessen symptoms and slow PD progression.
Exploring Therapy Advances
People with Parkinson's take a variety of medications to manage symptoms. PD researchers have spent decades working to discover therapies powerful enough to slow or stop Parkinson's. Some of these include:
Rasagiline
The 2009 ADAGIO study looked at whether rasagiline — a monoamine oxidase-B (MAO-B) inhibitor (these can minimize the enzyme MAO-B's breakdown of dopamine and ease movement symptoms) — could put the brakes on disease progression for people in early-stage Parkinson's. The results suggested the possibility that a 1 mg daily dose of rasagiline might hold disease-modifying potential, but a 2mg daily dose did not.
Despite the study's uncertainties, it still showed ample evidence that rasagiline better controlled symptoms for people with PD, which is why it's used in concert with levodopa, currently the most powerful medication for Parkinson's and a treatment mainstay since its discovery in the 1960s.
Levodopa
Levodopa is a proven effective therapy throughout the Parkinson's journey. In the past, people often delayed starting levodopa therapy based on the myth that it would stop working after a few years. A 2019 study looked at whether starting levodopa earlier or later could change the course of Parkinson's. While research showed levodopa didn't slow PD, it proved starting the medication early on in Parkinson's is safe.
Deep Brain Stimulation
When people who live with PD begin to experience severe motor fluctuations, tremors and dyskinesia, involuntary muscle movements that can't be controlled by optimal medication doses, a surgically implanted deep brain stimulation (DBS) device can deliver electrical pulses to the brain, easing symptoms and boosting quality of life.
Results of a 2020 study proved people with Parkinson's disease can also get long-term symptom relief with DBS. The research shows people who have DBS therapy early on — coupled with optimal medication — generally do better with dyskinesia control. Despite the profound benefits of DBS, it's not proven to delay disease progression.
As researchers work to solve the Parkinson's puzzle, empower yourself by prioritizing your well-being. Wholesome food paired with regular exercise habits and comprehensive team-based treatment are the building blocks of a better life with PD.
