Anicea Gunlock had goosebumps for hours after her patient went from using a walker to two-stepping.
Starting from their first session, Anicea knew her patient “Larry” was frustrated. He’d had physical and occupational therapy before to help with his Parkinson’s disease (PD) symptoms. His cognition was perfect, but his body wasn’t listening to his brain. Anicea went through her standard physical therapy exercises, but sought to do more for Larry.
“There has to be something else out there that might work better than just telling him to do the same thing over and over,” Anicea said. “That method wasn’t really helping anyone.”
She went home after their initial session and researched. She came across a study that used music to help facilitate a smoother gait pattern for people with PD. She set out to try it for their next session. She knew Larry liked country music, so she chose “Good Ole Boys Like Me” by Don William because it had a steady, slow rhythm, perfect for gait training.
There they were, in their second physical therapy session: Anicea, Larry and Larry’s wife. Anicea pressed play, the music started and Anicia told Larry to take his time, use his walker for support and stand in place for as long as he needed to, until he felt the beat.
“So we stand there for 20 seconds, he starts moving to the beat and off he went,” Anicea said. “It was instantaneous. He took off walking. I’ve never seen anything like it. No freezing, shuffling, going up on his toes. It was amazing. His wife was watching behind us with her hands on her mouth. She was shocked.”
It’d been years since Larry could move like that. After about 15 minutes he pushed his walker to the side and started dancing without it,” Anicea said.
“It was one of the best experiences I’ve ever had doing therapy,” Anicea said. She hit repeat on the song for the rest of the session. It was her first time trying dancing for gait training. She wasn’t equipped with more of a playlist because she couldn’t predict such a great outcome.
Since then she’s tried other songs, but the rhythm and beats didn’t work. “The song really has to have the perfect pace — it can’t be too fast, slow or all over the place,” Anicea said.
For their third session, Anicea asked Larry if she could record the dancing portion of their session. She never thought the video would turn viral. “The whole reason I posted it was to show other therapists how well music worked for gait training in hopes that they can have the same results,” she said.
Since then, Anicea and Larry’s occupational therapist have tried doing activities of daily living exercises to music. While the music helped, and sped up his movement it wasn’t as big a difference as his gait training.
“I’ve never participated in music or dance therapy classes, but I’m definitely interested in learning more about them now,” Anicea said. Since she’s posted the video she’s had other therapists tell her that music has also helped their stroke and dementia patients with exercises as well.
At the end of the day it’s all about her patients. Anicea still works with Larry. “We two-step every other session,” she said. “I try to incorporate his wife as much as possible when she’s there. I’ll play the music and let them dance the song away.”
Whether diagnosed at 31 or 72, tremor or no tremor, fast or slow progression, feeling relief or anger at hearing the words “You have Parkinson’s,” every Parkinson’s disease (PD) story is different. Every person who shared their PD Story with the Parkinson’s Foundation has one thing in common — they hope their story might just help someone else.
Each of the top PD stories below inspire us to keep making life better for people with Parkinson’s. Let these testimonials remind you that you are not alone. We thank everyone who has found the courage to share their story with us and our global PD community.
MY PD STORY: Senator Johnny Isakson
“The Parkinson’s Foundation is taking aggressive steps towards a future without Parkinson’s disease through the Reach Further campaign, and I am proud to support these ambitious plans.”
“If I learned one thing from being diagnosed young, at 21, it is that getting young-onset Parkinson’s is not a death sentence. Life will get tougher; you just have to find a way to adapt.” Read Samantha’s story now.
“From a time before my formal diagnosis, I have understood that exercise is important therapy... but humans are not good at connecting future consequences with immediate actions.”
“On the morning of my first day of ski lessons, my hands were shaking uncontrollably. I wasn't able to hold my cup or eat cereal. At first, I thought that it was just nerves...”
“In 2017 I noticed my husband Scott’s right pinky twitching… A few weeks later, Scott’s whole hand was trembling, and he could no longer hold a glass of water without spilling.”
Parkinson’s disease (PD), skin and bone health are closely intertwined. Researchers are exploring how they are connected to uncover information that could improve lives. Higher bone fracture risk, flaky or dry skin and too much or too little sweating can be common in Parkinson’s. Simple tips can help you tackle these and other related changes.
This article is based on a Parkinson’s Foundation Expert Briefing webinar exploring these connections presented by Nicki Niemann, MD, Muhammad Ali Parkinson Center at Barrow Neurological Institute, and Kenneth W. Lyles, MD, Duke University Medical Center. Barrow and Duke are Parkinson’s Foundation Centers of Excellence.
Parkinson’s and Skin Health
Research shows an overlap in skin health and PD. Overall cancer risk is reduced in Parkinson’s disease, but skin cancer risk — especially melanoma — increases.
In Parkinson’s, misformed alpha-synuclein protein builds up and clumps in the brain. Skin cancer biopsies of people with PD also show increased alpha-synuclein in the skin, compared to the general population. Additionally, people diagnosed with rosacea — facial flushing, redness and sometimes, bumps — are nearly two times as likely to be diagnosed with Parkinson’s.
PD and other neurological disorders also increase the risk for bullous pemphigoid (a skin condition causing itching, redness and large, fluid-filled blisters that can break and cause blood-borne infection).
Connections such as these have scientists exploring skin health as a possible biomarker (a measurable sign, such as heart rate, that can clue doctors in on your health) to help detect Parkinson’s sooner. Skin biopsy holds promise as a potential future Parkinson’s disease diagnostic tool. Earlier diagnosis can improve outcomes for people living with PD.
Skin Cancer Safeguards
Despite past misconception, levodopa, the most commonly prescribed PD medicine, does not increase risk of melanoma. However, though the association is not yet clear, some of the same shared risk factors for PD can also increase melanoma risk. These include being male, Caucasian, having red hair, fair skin and previous pesticide exposure.
Protect yourself by reducing direct sun exposure, wearing sunblock and visiting the dermatologist annually.
Asymmetry –the shape of a spot or mole is unequal Border – an irregular or scalloped edge Color – blues, reds, browns or black; suspect spots can vary in hue Diameter differs, too; melanomas can be the size of a pencil eraser, larger or smaller Evolution in spot color, shape or size should also be shared with your doctor
Skin Health Strategies
Studies estimate between 20 to 60% of people with Parkinson’s may also live with seborrheic dermatitis, compared to just three to four percent of people without PD. Symptoms can include itching, scaling, oiliness, redness and burning — mainly on the scalp, but for some people, the face, chest or back, too.
Over-the-counter medicated shampoos containing salicylic acid, zinc, selenium, tar or ketoconazole can help. A dermatologist can recommend treatment for severe symptoms, such as prescription-strength shampoos, steroids or other immune suppressants.
Excessive drooling can also be common in Parkinson’s. It can cause perioral dermatitis — redness and irritation around the mouth. Anticholinergic medications and botulinum toxin A (BOTOX ®) can be used to decrease drooling.
Sweating Changes
Sweating too much — whether on the head, neck or trunk — is more common in Parkinson’s than not sweating enough. Excess sweating can also happen on the foot soles, palms or at night. It’s often experienced even prior to a Parkinson’s diagnosis.
Sometimes changes in the autonomic nervous system, an area controlling automatic body functions such as rate of breathing, are responsible. Carbidopa-levodopa-related motor fluctuations, or “wearing off,” can increase sweating, as can other medications unrelated to PD, such as certain antidepressants. Infections, sleep apnea, endocrine conditions and cancer can intensify sweating, too.
Though not as common, decreased sweating can also pose problems for some people with Parkinson’s. This is often related to anticholinergics, including amantadine and trihexyphenidyl. Review your medication list with your doctor who can adjust prescriptions, identify other causes or offer treatments, such as:
topical medications, including prescription antiperspirant aluminum chloride hexahydrate
Wear breathable cotton clothes and socks, and non-synthetic shoes
Take lukewarm or cold showers
Increase fluid intake
Drink cold liquids
Use antiperspirant
Skin Changes
Sometimes, PD treatments can cause skin issues. While there are few reports of true levodopa/carbidopa allergy, the 25/100 formulation can cause a rash for some people, possibly due to a yellow dye. If this side effect occurs, your doctor might switch you to formulation without yellow dye, including 10/100, 25/250, Parcopa, Stalevo or Sinemet CR.
Some Parkinson's medications can also cause leg edema (swelling due to trapped fluid). These include amantadine and dopamine agonists, such as ropinirole, pramipexole, rotigotine and apomorphine. Talk to your doctor if leg swelling occurs within a few months of starting a medication.
People using Duopa therapy, levodopa/carbidopa intestinal gel delivered by pump through a small, surgically placed hole in the stomach, can also experience skin issues, including redness, leakage around the opening or abscess. Proper pump tube care and increased healthcare provider access is essential.
Deep brain stimulation (DBS) uses surgically placed electrodes in the brain and with an implantable pulse generator to block abnormal nerve signals in the brain that cause motor symptoms. Though skin-related complications are uncommon, a small percentage of users might experience hardware-site infection, or skin erosion near components.
Parkinson’s and Bone Health
Caring for bone health when living with Parkinson’s is critical. Exercise, regular bone mineral density screenings are key.
It’s estimated that about 45 million Americans have low bone mass, putting them at risk of joining the more than 12 million people in the U.S. who live with osteoporosis (a condition where bones become thin, fragile and prone to fracture). Such skeletal problems are often associated with aging.
People with PD are at higher skeletal fracture risk than others, experiencing fractures two to three times more frequently. Hip fractures occur four times as frequently. At best, less than five percent of people with Parkinson’s who experience fractures are treated. However, addressing and treating fractures is crucial: It can take someone who lives with PD longer to recover from a fall injury or fracture, and they may experience worsening symptoms, loss of independence and cognitive decline.
Fortunately, there are many ways to reduce fracture rates in people with PD and current research is exploring further ways to minimize bone risks.
Who’s at a high risk of osteoporosis?
People living with Parkinson’s
Women
Older people
Those with low body weight
Those with a family history of osteoporosis
Those with a history of fractures or low-impact fractures
Smoking and excessive alcohol intake increase risk
Glucocorticoid therapy, medicine used to reduce inflammation, can increase bone loss and fracture risk. Other medications can too — including proton pump inhibitor therapy, anticonvulsants, aromatase inhibitors, tamoxifen, Depo-Provera and steroids. Conditions that are associated with bone loss include gastrointestinal and autoimmune diseases, genetic issues, diabetes and others.
Boosting Bone Health
What’s good for your body is also good for your bones:
Stop smoking
Limit alcohol
Avoid sedating medications
Exercise can keep bones strong and strengthen muscles and in Parkinson’s, it can also improve many disease-related symptoms. Find something that makes you want to move and stay active. Physical therapy can help, too.
Maintaining optimal levels of calcium and vitamin D3 benefits bones and overall health. Because calcium in dairy foods can inhibit levodopa absorption, people with PD can find it hard to get the recommended 1200 mg daily for women over 50 and 1000 mg daily for men over 70. Calcium-fortified foods, such as juices, rice and breakfast cereals, can boost calcium levels. Chewable calcium citrate tablets can be taken without food and are easily absorbed. Doctors recommend limiting single doses to no more than 600 mg elemental calcium, splitting the dose if needed.
The body also needs adequate vitamin D to take in enough calcium. Research shows depressed vitamin D levels in people living with Parkinson’s. Vitamin D is easy to absorb if you live in a sunny place — wear sunscreen. If this isn’t possible, a nutritious diet, including fatty fish, such as salmon, liver, eggs and fortified milk or cereals, can help. Your doctor might also recommend vitamin D3 supplements.
Osteoporosis Medications
Medicines are also available to treat bone density loss. Hormonal medications include estrogen therapy and raloxifene, a selective estrogen receptor modulator, or SERM.
Prescription therapies that stop bone breakdown, called antiresorptives, include bisphosphonates such as alendronate (Fosamax®), risedronate sodium (Actonel®), ibandronate sodium (Boniva®) and zoledronic acid (Reclast ®). Anabolic medications boost bone building, and include teriparatide, abaloparitide and romosozumab.
The Parkinson’s Foundation strives to make Parkinson’s resources available to all, reaching learners through more access and a range of platforms — from audio to visual. To expand our reach, we worked with our Helpline team to select key podcast episodes to transcribe. Below find a list of our newly transcribed episodes:
About 70% of people with PD experience tremor sometime during the course of their disease, mainly affecting their hands. In this podcast episode, movement disorders neurologist Muhammad Nashatizadeh, MD, discusses ways to control tremor. Looking beyond today’s therapies, one of his research objectives is to identify new treatment options for debilitating movement disorders.
One of the findings of the Parkinson’s Outcomes Project is that anxiety is a major factor affecting the overall health of people with PD. As many as 40% of people with PD will experience some form of anxiety. In this episode, clinical psychologist Roseanne Dobkin, PhD, discusses the difference between reasonable worry and problematic anxiety and explains some of the ways mental health professionals can help when feelings become distressing or all consuming, interfering with day to day life and activities.
It is estimated that about one in six people with Parkinson’s taking dopaminergic medication will develop an impulse control disorder (ICD) sometime during the course of their disease. In this podcast episode, Gregory Pontone, MD, discusses forms of ICD’s, how to recognize them and tools for discussing them.
From the time of diagnosis and throughout the course of the disease, movement and staying physically active are essential. Exercise and physical therapy can help people with PD keep moving well. In this episode, Heather Cianci, PT, MS shares how physical therapists with a neurological specialization are an important part of the PD health care team and should be consulted early, for an initial evaluation, to address any movement problems and encourage exercise as a part of treatment to minimize problems later.
Sexuality is much more than just physical sexual functioning. It encompasses self-image, attraction and a broad spectrum of emotions. Complex problems may arise for people with Parkinson’s, including motor and non-motor symptoms, sexual functioning, diminished pleasure and changes in relationship dynamics due to symptoms or medications. In this podcast, Gila Bronner, MPH, MSW, CST talks about some of the sexual problems one may encounter with PD and offers practical advice for dealing with them and enhancing intimacy.
Two important issues regarding Parkinson’s medications are when to initiate them in the early phases of the disease and how to ensure that people use their medications on time, every time. In this episode, Indu Subramanian, MD, discusses the timing of when to begin medication and ways to get the most benefit from medications.
Social isolation can have harmful effects on health. It often increases with age because of loss of loved ones, hearing or vision deficits or loss of mobility. Loneliness may lead to poor sleep and depression, two symptoms already experienced by people with PD. In this podcast, Dr. Subramanian discusses loneliness and social isolation and offers suggestions for keeping them at bay.
People with Parkinson’s may experience two seemingly contradictory movement problems. Bradykinesia (slowness of movement) is a cardinal symptom of the disease. Dyskinesias are involuntary, erratic, writhing movements. In this episode, neurologist Benjamin Walter, MD, describes how bradykinesia and dyskinesia can affect people’s lives, how to alleviate the discomfort, how to work with your neurologist to minimize them and what is in development to help.
Among the many non-motor symptoms of Parkinson’s are blood pressure changes. One manifestation is neurogenic orthostatic hypotension, a condition in which blood pressure drops sharply when one moves from a reclining to a more upright position, such as standing up. In this podcast, neurologist Katie Longardner, MD discusses the problem, how it is diagnosed, what people can do to alleviate it and current research.
When to consider an assisted living facility or a skilled nursing facility for someone with Parkinson’s is a monumental decision. Joan Gardner, BSN and Rose Wichmann, PT explore many of the issues that are central to choosing an assisted living or skilled nursing facility as well as ensuring the best experience once someone resides there.
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."
