Meet four fundraisers and volunteers who inspire us:
Volunteering Helps Kathleen Find Community and Comfort
“I saw right away that Moving Day was more than just a walk, and I wanted to see how it changes people. I also wanted to help raise even one extra dollar for research so that the next person to get diagnosed doesn’t feel like I did. I want them to feel that there is hope.”
Allie Takes Action Against PD Diagnosis through Parkinson’s Revolution
“Part of my goal is pushing for a cure for Parkinson’s and making sure people are aware of it, but the other part is finding people who look like me. The Parkinson’s Revolution ride reminded me I have a long road ahead but right now, I’m fighting and feeling great.”
Karan Completes Remarkable World Marathon Challenge for His Father
“One of the lessons my dad taught me early on is you’re meant to test your limits and if you’re going to do that, find a cause that’s near and dear to your heart and raise awareness and money for it.”
Cornerstone Parkinson’s Fit Community Combats Parkinson’s By Moving Together
“We love Moving Day. We all think the Parkinson’s Foundation is important because they have so much to offer people with Parkinson’s. When someone new comes to the gym, the first thing I tell them is to connect with the Foundation and use their resources. We are so happy we can help raise money to support the Parkinson’s Foundation.”
Research Training Tailored to Black and African American Parkinson’s Community Aims to Advance Health Equity
As researchers advance treatments for Parkinson’s disease (PD), there is a critical need to engage with the Parkinson’s community early and often during the research process. Populations of focus — including Black and African Americans,hispanics/latinos, women and others — are often underrepresented in, and historically excluded from, research. Engaging these communities in the development of drugs and the design of clinical trials creates an opportunity for greater representation in research. The Parkinson’s Foundation is committed to making research inclusive and creating a systemic change in the PD research space.
In September 2023, the Parkinson’s Foundation hosted a new, tailored version of its Learning Institute, which trains people with Parkinson’s and care partners in research and advocacy to work alongside scientists and government agencies in the drug development process.
Held in Atlanta, GA, in collaboration with Morehouse School of Medicine, the new training sought to engage the Black and African American Parkinson’s community (people with Parkinson’s, care partners, neurologists and professionals). During a three-day training, participants found community, learned how to confidently work alongside researchers and use their voice to advocate for changes in research.
“As a Foundation, we are actively creating programs and developing partnerships that will advance health equity for populations of focus,” said Evelyn Stevens, senior director of community engagement at the Parkinson’s Foundation. “We designed this educational and interactive training to deepen our understanding of the current needs of Black and African American people living with Parkinson's, and their care partners.”
The training included exclusive insight into the Foundation’s global genetics initiative, PD GENEration: Mapping the Future of Parkinson’s, and the opportunity to enroll and receive on-site genetic testing as part of the study. Before the training, 29% of attendees had reported participating in a research study. By the end of the Learning Institute, 100% of participants with Parkinson's had completed their first research study, PD GENEration.
“Being part of the faculty for the Learning Institute to advance health equity in Parkinson’s care for the African American community was remarkable.”
- Reversa Joseph, MD, movement disorders specialist at Chalmers P. Wylie Veterans Outpatient Clinic
“I was honored to present on ethics in research as it was vital to empower participants with an understanding of the research process, enabling them to make informed decisions about clinical trial participation,” said Dr. Joseph.
Ensuring diversity and inclusivity in Parkinson’s research is critical to accelerating breakthroughs toward a cure, which is why PD GENEration is designed to increase racial diversity among participants. In 2023, it announced Morehouse School of Medicine as the first historically Black institution of medicine to become a PD GENEration research site (read the article).
As of January 2024, 14.9% of PD GENEration participants are racially diverse. For perspective, U.S. clinical trials generally achieve less than 2% of diversity among participants.
“PD GENEration has established a strong relationship with the community through engagement and programs,” said Amasi Kumeh, director of research partnerships at the Parkinson’s Foundation. “We have become a gateway to research, helping recruit diverse participants for clinical trials and providing information about the process.”
The Learning Institute also emphasized community. The YMCA of Metro Atlanta, The Center for Movement Challenges, and a physical therapist from Emory University hosted a movement break for attendees, as exercise is proven to help people with PD manage symptoms. On the final afternoon, community members of Atlanta were invited to learn more about PD, get resources and meet the graduates of new class of 2023 Research Advocates.
No Topic Off-Limits
Black and African Americans experience health disparities when navigating Parkinson’s from day one — and are more likely to be diagnosed later in the disease stage than white people. Knowing this, the event was designed to welcome open conversation. “We wanted to provide a safe space for everyone to share their experiences and learn from one another,” Evelyn said.
For the first time, roundtable discussions were hosted. Every table was assigned a PD expert, neurologist or Parkinson’s Foundation staff member to lead a PD topic — from symptom management to best ways to reach the Black and African American community and how to connect people to PD resources.
“The moment that I stepped into the conference room for my first day of training, I knew this would be a life-changing experience.”
- Vanessa Russell Palmer, a person with Parkinson’s and Learning Institute attendee
“Interacting with other African Americans with Parkinson's, neurologists that look like me and sharing our daily challenges was empowering," said Vanessa. Becoming a Parkinson's Foundation Research Advocate has provided me with a new village of support, and I feel empowered to fight this disease every day and to work to bring more information about Parkinson's research and access to care to the African American community.”
Discussing the ethics of research was central to the training, directly addressing medical mistrust and the historical mistreatment the community has experienced in research and care. “Understanding past mistakes is crucial to preventing their recurrence, and it was rewarding to highlight the oversight that is now in place to ensure ethical research practices. Discussing the root causes of medical mistrust is necessary for acknowledgment and progress, fostering a path towards informed and empowered healthcare decisions,” said Dr. Joseph.
Through this training and other initiatives, the Foundation aims to continue addressing the ethical barriers associated with research in its effort to help all people live better with Parkinson’s.
3 Ways You Can Help Improve Health Equity for People with PD
Participate in research studies. Help diversify research. Before enrolling, review the informed consent form with someone on your care team and let your care team know about the barriers you may have with participating in research. Learn more about Getting Involved in Research.
Help spread Parkinson’s awareness. Follow us on social media and share stories and news that interest you. The more people know about Parkinson’s, the more they know this disease goes beyond a single demographic. When people know the early signs of Parkinson’s, the sooner they can get diagnosed and have a better quality of life.
Share your story. Your story may inspire someone who has a similar experience navigating Parkinson’s disease. Submit your story now.
Diversifying Research
Diversity in research accelerates the rate that researchers can better understand PD and drives better outcomes for the entire PD community. Research advocates return to their communities, activated and inspired to raise awareness and educate their community about the importance of taking part in clinical trials. “Diversifying research gets us one step closer in our efforts to advance treatments and find a cure for Parkinson’s disease.” said Evelyn.
Next, the Parkinson’s Foundation is working to tailor more trainings and local educational events to populations of focus. As with every Foundation event, the focus remains to ensure all people with PD and their families have what they need to manage this disease and live better with Parkinson’s.
For better or for worse, for richer or for poorer, in sickness and in health, till death do us part! If you have ever been married, you remember those words. However, no one knows when, or if, the worst and the sickness will come.
I have been married to the love of my life for 29 years. We have had a great married life. We have experienced ups and downs like any other married couple, but I can honestly say that the years have taught us the meaning of true partnership.
We have learned how significant our roles are in our relationship. We have learned the value of what we have built, and we have learned how to love one another without overwhelming each other with unrealistic expectations. But we have now been placed in the challenge of our lives, and we are being tested like no other.
In 2019, my husband Michael was diagnosed with Parkinson’s disease (PD). The diagnosis was welcome, as I had begun seeing changes in him at least two years prior. He is a creature of habit and always has a routine, but I began to see differences in the way he walked, talked and even with his memory.
Mike didn’t have what some would consider the classic symptoms of Parkinson’s. He did not have the tremor made famous by legendary boxer, Muhammad Ali, or involuntary twitches like Michael J. Fox. Instead, Mike’s primary Parkinson’s symptom was slowness of movement and speed (called bradykinesia). He also experiences chronic stiffness that is sometimes so debilitating it renders him in a statue-like state.
After my husband was diagnosed with Parkinson’s, I made it my mission to learn as much as possible. I found out about the Parkinson’s Foundation and joined a support group, where I heard about the Learning Institute. Attending the Learning Institute was eye-opening, informative and inspirational. Mike met other men living with the disease, I met other caregivers I could relate to, and it helped us feel less alone on this journey.
Back in the day, it was uncommon for older people, especially African Americans, to seek medical attention for physical and mental needs. Now, as a Research Advocate, I can ask questions and help raise awareness for PD. I use this role to spread information about the importance of clinical research and genetic testing.
Parkinson’s is a progressive disease, and Mike’s PD has slowly progressed over the last two years. On what we call a Parkinson’s good day, Mike can get out of bed on his own, feed himself, dress himself and even drive to the store. On a Parkinson’s bad day, I must bathe him, feed him and dress him. He also experiences hallucinations, falls and dementia. These are the days when my wife hat doubles as the caregiver hat.
My husband is now living on disability, and I work a full-time job from home. It has been a blessing to be able to stay home with him because his bad Parkinson’s days are becoming more frequent. This 5’11” former Marine who has lived his life so fearlessly and unapologetically, has turned into a man that slumps over, shuffles when he walks and constantly drools. But my husband is a trooper. He believes that his condition is what it is, and he has yet to complain.
Caregiving is the ultimate gesture of providing kindness to another person. It is the ultimate sacrifice of love and commitment. In my case, it solidifies the vows that I made to my husband 29 years ago: to love and to cherish, for richer or for poorer, in sickness and in health, till death do us part. It means, “I know that you matter, and I will prove it to you.”
Everyone wants to know they matter and that their life means something. I try my best to prove it to my husband every single day. Out of everything we go through in our lives, the best thing I can do for him is let him know that his life will not go unwitnessed or unnoticed because I will witness it and notice it, always.
I do what I need to do to ensure that Mike has the best quality of life. I refuse to let Parkinson’s win. This isn’t the life I thought we would have together, but it’s the life we have been given. I am still looking forward to our days ahead, even if I don’t know what those days will look like.
Help us improve Parkinson’s research. Become a Research Advocate today.
Plastic Waste Contaminants Could Promote Parkinson’s
A new study indicates that tiny particles of polystyrene can promote the clumping of a protein involved in Parkinson’s.
Plastic waste is a growing problem, and as plastics break down the pieces can be problematic. A new study in Science Advances suggests that tiny plastic particles may be the latest environmental contributor to Parkinson’s disease (PD).
Microplastics are defined as particles smaller than 5 millimeters in diameter — for comparison, a grain of rice is 6 millimeters— and can also include nanoplastics (less than 1 micrometer). According to past research, it is common for blood samples to contain polystyrene nanoparticles, which come from pieces of foam packing materials, cups and cutlery. Research has also shown that unlike other kinds of plastic, polystyrene nanoparticles can enter the brain.
Parkinson’s disease is diagnosed when a protein, called alpha-synuclein, begins to clump in vulnerable neurons in the brain. The clumping ultimately affects dopamine, the neurotransmitter that gets progressively lost in PD, leading to early signs of the disease. This new study shows that polystyrene nanoparticles can interact with alpha-synuclein and promote its clumping in test tubes, in brain cells grown in a petri dish, and in mice.
Researchers mixed alpha-synuclein “seeds” with nanoplastics in test tubes to see if the presence of nanoplastics triggered the clumping of alpha-synuclein. After three days, they observed that, when combined with alpha-synuclein seeds, the nanoplastics promoted the acceleration of alpha-synuclein clumping formations.
Nanoplastic contaminants interact with alpha-synuclein at very specific regions of the protein.
Using computer modeling, the research team predicted a strong interaction between polystyrene nanoparticles and a region of alpha-synuclein. To validate this prediction, the team created a shortened version of alpha-synuclein that lacked the region the nanoparticles were predicted to interact with. Without that part of alpha-synuclein, the nanoparticles did not stick to the protein in lab experiments, indicating that the computer model was accurate.
Nanoplastic contaminants accelerate alpha synuclein clumping in neurons.
In mouse neurons grown in a petri dish, the researchers observed that nanoplastics were internalized into a specific compartment within the cell, called the lysosome, where alpha-synuclein tends to clump. They found that the nanoplastics accelerated the accumulation of pathogenic alpha-synuclein in these cells.
Nanoplastic contaminants accelerate alpha synuclein clumping in the mouse brain.
The researchers injected alpha-synuclein seeds and nanoplastics into the brains of live mice and found that about 20% of dopaminergic neurons — those thought to be crucial in the development of Parkinson’s — internalized both. Injecting the combination into mice led to an increase in alpha-synuclein clumps in dopaminergic neurons and an increase in alpha-synuclein pathology (as measured by molecular markers) compared to injecting the seeds alone. In 3 of 10 mice injected, nanoplastics alone led to alpha-synuclein pathology.
Traces of polystyrene can be found in human brain tissues. Finally, in brain tissue samples obtained from people with Lewy body dementia, a condition characterized by the presence of alpha-synuclein aggregates, the research team identified traces of polystyrene. This discovery suggests the potential presence of plastic nanoparticles in the human brain.
Highlights
Alpha-synuclein clumping was triggered and/or accelerated by nanoplastics in three different models — test tubes, brain cells grown in a petri dish and in mice brains.
The interaction between polystyrene nanoparticles and alpha-synuclein occurs at a specific region in the alpha-synuclein protein.
In brain tissue samples from people with Lewy body dementia, traces of polystyrene can be detected, suggesting that plastic nanoparticles may be present in human brains.
What does this mean?
Plastic waste may be contributing to Parkinson’s as an environmental factor. However, we do not yet know how such interactions might be happening in humans and whether the type of plastic might play a role.
What do these findings mean to the people with PD right now?
People are exposed to and consume microplastics every day, through breathing, eating foods and drinking liquids — whether they are packaged in plastic or not. Studies like this one are integral to disentangling how the effects of environmental toxicants contribute to the development of PD — we now know that polystyrene nanoparticles can make their way into the brain. Explore the environmental risk factors connected to Parkinson’s.
People who are concerned that they may be experiencing Parkinson’s symptoms should talk to a healthcare provider.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and the topics in this article through our below resources, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.
Meet a Researcher Working to Delay Parkinson’s via Midbrain Neurons
“I study the brain’s immune cells, called microglia,” said Lindsay Mitchell De Biase, PhD, from the University of California, Los Angeles. “Any population of neurons, including dopamine neurons, are intimately surrounded by and permeated by these cells. Whenever there is a challenge to the central nervous system, whether that is an injury or an infection, these cells change the way they function and interact with neurons.”
Through her 2021 Parkinson’s Foundation Stanley Fahn Junior Faculty Award, Dr. De Biase is studying how microglia influence vulnerability of dopamine neurons to Parkinson’s disease (PD). She and her research team hope to find ways to harness the transformative nature of microglia to preserve dopamine neurons and slow PD progression.
What are microglia?
Microglia are brain immune cells that are “first responders” to brain infection, injury, and disease. They make up about 10% of brain cells. New research shows they also regulate brain development, help maintain neuron health and repair injuries.
Microglial cells regulate central nervous system inflammation and the signaling connections between neurons. Emerging research suggests that mitochondria, organelles which generate the energy necessary to power cells, play an important role in regulating how microglia function. Understanding this interaction between mitochondria and microglial function, particularly the ability of these cells to influence the health of dopamine neurons, is where Dr. De Biase’s research comes into play.
“Many gene mutations that increase the risk for Parkinson’s are mutations in genes related to mitochondrial function,” said Dr. De Biase. “We think that some of these mutations are increasing disease risk, not only by affecting energy production within neurons, but by pushing microglial cells into a damaging, inflammatory state.”
Dr. De Biase is using novel technology to study the role of microglial mitochondria in a mouse model of PD. The intervention strategy she developed could be used in people who are at high risk for developing Parkinson’s, to delay disease development or prevent it. In people with PD, the strategy could create a more neuroprotective environment and preserve remaining dopamine neurons to delay PD progression.
Dr. De Biase’s research involves manipulating the function of microglia to see if it can protect midbrain dopamine neurons, which regulate movement, and play an important role in PD progression. Microglia play a key role in promoting neuronal health by mitigating overactivity and assisting in the formation of new connections between neurons. Dr. De Biase is working to harness these beneficial actions, seeking to “program” microglia to protect dopamine neurons and slow PD progression.
“Microglia are dynamic, malleable cells and could represent therapeutic targets that are highly distinct from others that have been explored thus far,” said Dr. De Biase.
“My greatest hope from our work comes from the fact that microglial cells are so dynamic,” she said. “These cells really can change their properties in many different contexts, and I think that makes them one of the most targetable cell populations in the brain. So, my hope is that what we are learning will reveal strategies that are really feasible for harnessing the neuroprotective abilities of these cells.”
Environmental Exposures in Veterans with Parkinson’s
December 14, 2023
he U.S. Department of Veterans Affairs (VA) estimates that 110,000 veterans have Parkinson’s disease (PD). While the exact cause of Parkinson's is unknown, research suggests that its cause can be linked to genetic and environmental factors. This webinar will discuss how, for some veterans, environmental exposure and toxins can increase the risk of PD, and the role head trauma plays in the development of PD.
Caroline Tanner, MD, PhD, Neurologist
The Center for Parkinson's Disease & Movement Disorders
San Francisco VA Medical Center
Patrick W. Welch, PhD
Retired US Marine Corps
Parkinson's Foundation Ambassador
Gretchen Glenn, LCSW
Associate Director of Education
Philadelphia Parkinson's Disease Research, Education, and Clinical Center
Science News
Top Parkinson’s Science News Articles of 2023
To solve a puzzle, you need all the pieces. Right now, Parkinson’s disease (PD) researchers are working to identify all the pieces in the brain and how they fit together to form Parkinson’s. Every year, scientists get closer to gathering all the pieces, understanding how this disease works in order to solve it.
Our Science News blog series focuses on the latest Parkinson’s studies and how they can impact you or your loved one living with this disease. 2023 was a busy year for PD research. Explore the top Science News articles of 2023:
Parkinson’s is not always easy to diagnose or monitor. Unfortunately, there is no single test — besides a doctor assessing symptoms — to diagnose Parkinson’s or predict the course of the disease.
Prior studies have shown a connection between Parkinson’s and breathing patterns. Using this data, researchers created a new AI system that uses breathing patterns while a person is sleeping to help diagnose and monitor disease progression — with 90% accuracy.
Diagnosing and treating Parkinson’s early on can lead to better disease management and a higher quality of life. This study found evidence of molecular changes in the blood that mirror changes in the brain of people with Parkinson’s who experience cognitive and movement symptoms.
Understanding and identifying these molecular changes is essential for developing new minimally invasive tests that would not only diagnose Parkinson’s but help track its progression and how it responds to treatment. To connect these dots, this study looked at RNA (a molecule essential for various biological processes) for answers.
Constipation impacts more than 60% of people with Parkinson’s. Of those with PD who suffer from constipation, it is often chronic, severe and unresponsive to standard treatments. A new drug is hoping to change that.
In Parkinson’s, the protein called alpha-synuclein clumps in the brain. These clumps can also form in the nerves of the gastrointestinal (GI) tract, which can decrease the strength and coordination of the bowels, resulting in constipation. In a clinical trial, the biotech company Enterin tested ENT-01, a compound designed to act on nerve cells in the GI tract and prevent this protein from clumping. This drug was found to help people with Parkinson’s who experience constipation.
By the time a doctor makes a PD diagnosis, the disease has most likely progressed for years before early signs even show. However, this study adds promising new data to support a test that may allow Parkinson’s to be diagnosed before symptoms appear.
In the brains of people with Parkinson’s, the protein alpha-synuclein clumps. There are different types of clumping, including a type that act as “seeds” that spread, much like a red sock in the washing machine can turn everything pink. When these misfolded proteins clump together, they eventually kill brain cells, and PD symptoms appear. This study used a test called an alpha-synuclein seed amplification assay (SAA) that distinguishes between people who do or do not have Parkinson’s. The study found that SAA detected early Parkinson’s 87% of the time.
Inflammation plays a key role in helping the immune system recognize and fight illness and disease. However, if inflammation persists over long periods of time — which might be the case in Parkinson’s — it can begin to do more harm than good. New research suggests that inflammation may play a critical role when it comes to predicting and treating Parkinson’s.
In this study, researchers sought to determine whether inflammation is present early in Parkinson’s, and whether certain markers of inflammation were connected to particular symptoms.
From constipation to medication absorption and nutrition, the gut plays a role in Parkinson’s. This is why a team of researchers set out to design a study that links a stool sample test to a PD diagnosis.
To develop a test for a disease, researchers often rely on a biological indicator (called a biomarker). The alpha-synuclein protein is a potential biomarker of Parkinson’s, and when it clumps, it can be detected in the saliva, tears, urine and blood of people with Parkinson’s. However, there is no test that can reliably predict or diagnose Parkinson’s using these samples. This new investigated how alpha-synuclein levels detected in stool samples could predict Parkinson’s.
In a word, momentum was the theme for the Parkinson’s Foundation in 2023. Thanks to the Parkinson’s community, especially our donors, we worked hard to make life better for people with Parkinson’s disease (PD) through advancing research and prioritizing access to care.
Here are 11 ways you helped us keep the momentum in 2023:
In July 2023, we published a study that found that only 50% of people with Parkinson’s saw a general neurologist. As a result of these findings, we are expanding disease-specific training to neurologists and other healthcare providers, and pursuing ways to improve access to care across all demographic and population groups.
2. Provided Genetic Testing and Counseling to 11,000 people with PD
In 2023, our global genetics study PD GENEration: Mapping The Future of Parkinson’s Disease reached the milestone of providing genetic testing and counseling to 11,000 people with Parkinson’s. PD GENEration test results empower people, help them work alongside their doctor to tailor PD treatment, and can match them to gene-specific clinical trials. Thus far, PD GENEration data shows that 12.7% of people with Parkinson’s have a genetic link to the disease — much higher than the originally believed 5-10%.
To bring specialized Parkinson’s care to more people, we designate medical centers that know how to treat this complicated disease. In 2023, we designated eight new centers as part of our Global Care Network, with the first-ever designations in Wisconsin and Washington, and the country of Japan.
The Parkinson’s Virtual Biotech, a partnership with the Parkinson’s UK, is currently funding 13 potential medications in development that either address PD symptoms or aim to slow, stop, or prevent the disease altogether. This initiative gets us closer to delivering life-changing treatments in years, not decades.
A Parkinson’s breakthrough can happen at any time, in any lab, which is why we directly fund scientists who are conducting innovative studies attacking Parkinson’s from every angle. In 2023, we awarded $2.8 million across 30 promising research grants.
Dr. Wang is exploring a new way to target the cause of PD by using RNA-degrading technology. His lab is working to prevent over-accumulation of alpha-synuclein (a protein) in the brain, hopefully paving the way to halt the development of the disease.
Ensuring diversity and inclusivity in Parkinson’s research is critical to accelerating breakthroughs toward a cure. In 2023, we partnered with Morehouse Healthcare to expand genetic research in the Black community, making Morehouse the first historically Black institution of medicine to become a PD GENEration research site.
We awarded nearly $1 million in community grants to PD programs across 35 states. From non-contact boxing classes to educational events and wellness programs, we have invested more than $10.4 million in 787 community-based programs since 2011.
Even though 90,000 Americans are diagnosed with Parkinson’s every year, most healthcare professionals — including nurses, pharmacists and general practitioners — do not receive in-depth PD care training. We added new accredited online courses to our Education Series for Community Providers, which are designed to improve treatment and outcomes for people with Parkinson’s.
We launched 50 new Spanish pages on Parkinson.org. From symptoms to managing PD, these pages are designed to reach the Spanish-speaking Parkinson’s community and connect them to key information and tools.
10. Raised $3.5 million through Parkinson’s Champions
Parkinson’s Champions are a dedicated group of people in the PD community who fundraise to help us fight Parkinson’s. Parkinson’s Champions do it all, they run in prestigious races, cycle for Parkinson’s Revolution, host Facebook fundraisers, and more. In 2023, Parkinson’s Champions raised $3.5 million to propel us towards a cure.
Photo credit: Tricia Baron
On April 11, the producing team behind the Broadway hit, A Beautiful Noise: The Neil Diamond Musical presented $500,000 to the Parkinson’s Foundation in honor of legendary singer, songwriter and performer Neil Diamond, who is living with Parkinson’s.
Every year, the top neurologists and Parkinson’s experts in the world attend renowned conferences to share new information about PD treatments and research. In 2023, the Parkinson’s Foundation shared numerous research and care findings at two premier conferences.
As much as we accomplished in 2023, we are committed to doing more for the PD community in 2024. Your continued support is the only way we can make that happen. Thank you.
Detecting Early Parkinson’s with a Wearable Movement-Tracking Device
According to a new study, data from smart devices may be able to detect Parkinson’s disease years before a diagnosis.
What if a smartwatch could detect Parkinson’s disease (PD) before you knew something was wrong? A new study in Nature Medicineused digital movement sensors, the kind of technology found in smart devices, to detect Parkinson’s disease years before a clinical diagnosis.
By the time a person is diagnosed with Parkinson’s, they have already lost 50% to 70% of dopamine neurons. Their brain cells involved in memory, movement, motivation, mood and attention have degenerated. Due to this reality, researchers are eager to find accurate, affordable and non-invasive tools to help detect Parkinson’s sooner.
The Methods
For this study, researchers used smart devices with a movement tracker to collect information on participants’ movement and activity levels. The study assessed years of data points to find patterns that point to Parkinson’s. Researchers utilized data from a randomly selected group of 103,712 people participating in the UK Biobank, a study of more than 500,000 people aged 40–69 years with ongoing follow-up of clinical status. They used a wrist-worn accelerometer, which can detect movement and rate of speed changes (acceleration), to study average acceleration for each hour of the day, as well as sleep patterns, over a seven-day period.
The Results
Reduction in acceleration can be seen before PD diagnosis. Over the course of two years, 273 participants were diagnosed with Parkinson’s. Another 196 people received a new PD diagnosis more than two years after they collected the data. Remarkably, in the 196 people who received a PD diagnosis after the study, researchers saw a reduction in their average daytime acceleration several years before their PD diagnosis, during what is known as the prodromal stage (where early signs are present but no clinical diagnosis has been made).
No other diagnosis shows a similar pattern. Parkinson’s disease was the only diagnosis associated with a reduction in movement before (the prodromal stage) and after diagnosis. This reduction did not correlate with other diagnoses, including Alzheimer’s, dystonia (a sustained or repetitive muscle twisting, spasm or cramp) or osteoarthritis.
Sleep disturbances are more marked in PD than in other disorders. Using the movement data, researchers found reduced quality and duration of sleep both before and after PD diagnosis compared to people without PD. People diagnosed with PD slept fewer hours overall, had fewer consecutive hours of sleep and slept more frequently during the day than both people without PD and those in the prodromal stage. Sleep deterioration was observed in other diagnoses, but not to the same extent as seen in PD.
Acceleration data predicts prodromal PD. To test whether prodromal PD could be predicted based on the data, researchers created a model using age, sex and average acceleration. They successfully identified cases of Parkinson’s before diagnosis from the UK Biobank population. This model was better at predicting PD than a model that relied on other PD markers, including genetics, lifestyle (such as smoking or heavy alcohol use) and blood biomarkers.
Acceleration data predicts time to diagnosis. Finally, researchers leveraged the data to build a model to accurately predict the amount of time until a PD diagnosis. They also found that their model could predict the probability of not receiving a Parkinson’s diagnosis in the following several years.
While several studies have shown that changes in movement (including the use of digital gait measures) can be associated with prodromal PD, this is the first study to show the potential usefulness of accelerometers in detecting PD years before a clinical diagnosis.
Highlights
Wrist-worn movement trackers could detect changes in average acceleration years before a PD diagnosis, during the prodromal stage.
Only participants with PD experienced a reduction in acceleration both before and following a diagnosis, suggesting this measure is disease-specific and can potentially be used in early identification for people likely to be diagnosed with PD.
The accelerometry model could predict who would develop PD, and when the diagnosis might be expected.
What does this mean?
This study shows that the reduction in acceleration is PD-specific and can be detected years before a clinical PD diagnosis. This may mean that in the future, doctors may be able to leverage activity data from a smart device to diagnose Parkinson’s disease earlier.
However, more studies are needed before smart device data become a widely available diagnostic tool. Overall, more research is needed to help clinicians detect and confirm an early Parkinson’s diagnosis.
What do these findings mean to the people with PD right now?
People who are concerned that they may be experiencing Parkinson’s symptoms should talk to a healthcare provider.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and the topics in this article through our below resources, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.
I was diagnosed with Parkinson’s disease (PD) 30 years ago. For me, it started as an achiness. My hands were in a lot of pain and stiff, but they weren’t trembling yet. I started looking for answers and one day, a doctor walked in the room, looked at me and said, “you have Parkinson’s” which I thought was a pretty bold statement for never having seen him before, but he was right.
After that appointment, I cried the whole way home. I was overwhelmed with questions. What does this mean for me? What does it mean for my spouse and my family?
I did not find any peace in those questions, and I did not know what to tell anybody. So, I kept it to myself. I had Parkinson’s for 15 years before I told anybody, including my kids. I was a clinical nurse, and I worried about how sharing the news would affect my job, social life and family life.
I did a lot of overthinking and watched my behavior. I held on to the things I could control until PD made it impossible. Any uncontrolled movement sent me spinning, wondering if anyone noticed. Part of my job as a nurse and diabetes educator required me to travel to different clinics to teach people how to manage their diabetes. When I was teaching the classes, my mouth would get dry, and I could hear changes in my voice. It was getting harder to hide. I just wanted to look and feel like everyone else around me, but once I hit the 15-year mark, I couldn’t hide it anymore.
When teaching those classes, I told participants they needed to focus on what they could control and the positive things they could do to manage their disease and I realized I needed to do the same thing for myself. I decided I wasn’t going to focus on the negatives of having Parkinson’s and I was going to do everything I could to slow its progression and improve my health.
Staying active is vital, and I made sure I exercised for at least 45 minutes to an hour every day.
I started to tell people in my life about my diagnosis, including my kids. That was hard and I didn’t want anyone to look at me and only see the disease. My kids were shocked, worried about me and wondered if it was hereditary. I think it took them some time to digest the news, but if anything, it has driven them to offer more help to me and my husband. They have been so supportive. My friends were also shocked. Some of them were angry I kept it from them, but I did what was best for me at the time.
Now, openly living with Parkinson’s is just part of life. As one of my friends says every time he watches me take a handful of pills, “better living through chemistry.” And in my world, that works.
I also want to share some of the things people don’t usually think about when they hear “Parkinson’s disease.” There are so many little and big ways this disease affects you.
It makes your eyes dry. I use daily eye drops and my doctor recommended I wrap plastic wrap around my head to keep my eyes moist. All I need is a CPAP machine to look like Darth Vader when I go to bed.
It affects your voice. My voice crackles now and I start to sound like Mae West.
It makes opening bags difficult. Those plastic bags at the grocery store are impossible to open. So is a bag of potato chips.
It changes the way you eat. I must have salads chopped extra fine or I end up wearing them. And do you know how hard it is to eat peas with a fork?
It makes putting on makeup a small feat. If I’m not careful, I’ll end up looking like Lucille Ball, painted all over, or a two-year-old with a coloring book. And put on mascara at your own risk!
It means small tasks are more difficult. Mending clothes, putting on jewelry, decorating a cake and buttoning buttons or pulling up zippers can feel impossible.
It affects how I interact with technology. I have an iPad, but I haven’t been able to master a lot of things on it because tremors cause me to touch the same button two or three times. Same with the cash machine, where punching in my PIN number wrong has caused me to lose my card.
These things are just a matter of fact for people with Parkinson’s. These little annoyances add up and change your life. I have found ways to deal with them, and there are worse things than living with Parkinson’s, but some days, it moves to the top of the list. Which is why I got involved with the Parkinson’s Foundation. I have met many people through them, and they have made a lot of information available and have excellent resources, like Centers of Excellence, for people to receive better care. The work the Parkinson’s Foundation is doing is offering hope to those affected by PD — and everyone needs hope.
But we need to do more. We need more research so we can find new treatments and a cure for Parkinson’s. We need to make sure everyone can access the best care and find support through the Foundation’s resources.
My friends ask me how they can help, and I say the best thing they can do is make a donation. We need to invest in research so we can find a cure. We need to provide support for people with PD and their care partners. The Parkinson’s Foundation is doing this work, but they need our help. We all need to do our part and support this work. No one should have to live like this.
