In sessions with Dr. Rush, we explore different dimensions of a mindfulness practice. She will share ways to ground and settle the mind and body. These mindfulness techniques can offer moments of respite and clarity that can be useful throughout your week. Find a comfortable seat and join your mindful Parkinson's community for a special session. Whether this is your first mindfulness Monday, or you are a returning participant, these sessions are created with the intention of including everyone. There will be time for questions following the practice.
Speaker
Taylor Rush, Ph. D.
Health Psychologist, Director of Behavioral Services and Interdisciplinary Programs, Center for Neurological Restoration, Cleveland Clinic
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.
Managing a chronic condition can bring up feelings of overwhelm and anxiety. In this session we will think together about the cultivation of equanimity through mindfulness practice and offer a meditation specifically designed to build equanimity in the face of life’s most pressing challenges.
Speaker
Devon Hase
Author, Meditation Teacher
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.
In sessions with Dr. Rush, we explore different dimensions of a mindfulness practice. She will share ways to ground and settle the mind and body. These mindfulness techniques can offer moments of respite and clarity that can be useful throughout your week. Find a comfortable seat and join your mindful Parkinson's community for a special session. Whether this is your first mindfulness Monday, or you are a returning participant, these sessions are created with the intention of including everyone. There will be time for questions following the practice.
Speaker
Taylor Rush, Ph. D.
Health Psychologist, Director of Behavioral Services and Interdisciplinary Programs, Center for Neurological Restoration, Cleveland Clinic
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.
Study Finds Potential Link Between Parkinson's and Gut Health
Inflammatory bowel disease (IBD) — conditions like Crohn's disease and ulcerative colitis — are linked to an increased risk of developing Parkinson's disease (PD), a neurodegenerative disorder affecting movement. Scientists are working to figure out why the diseases are linked, and a key player may be the community of microbes living in our gut, often referred to as the gut microbiome.
The gut microbiome is a complex ecosystem of trillions of bacteria, fungi, viruses and other microorganisms that live in our digestive system. It plays a crucial role in digestion, immunity and brain health. An imbalance in this gut microbial community, known as gut dysbiosis, can contribute to various health issues.
A recent study compared the gut microbiomes of people with Parkinson’s disease, IBD and healthy individuals. It also examined larger, publicly available microbiome data from people with Parkinson’s or IBD. This research is the first to directly compare gut microbiomes across these three groups.
Parkinson’s Foundation Scientific Advisory Board member Malú Gámez Tansey, PhD, led the study, which was published in npj Parkinson's Disease; Michael S. Okun, MD, Parkinson's Foundation National Medical Advisor, was also a study contributor. The results revealed previously unknown similarities between the gut microbiomes of people with Parkinson’s and those with IBD.
The study found a reduced number of a certain type of microbe in both people with inflammatory bowel disease and Parkinson’s, suggesting that these specific microbes may influence the risk of Parkinson’s.
Study Results
The study recruited 54 people with Parkinson’s, 24 people with IBD and 16 people without these diseases. The researchers used fecal samples and special techniques to identify the microbes that make up each participant’s microbiome. When they compared the microbes, they observed clear differences as well as certain overlaps in the species of bacteria in the guts of people with IBD and Parkinson’s compared to healthy individuals.
Additionally, in large sets of data from past studies of people with IBD or Parkinson’s, they found that even though there are unique changes in each condition, there are also specific bacteria and metabolic processes that are either more or less common in both IBD and Parkinson’s.
In people with Parkinson’s or IBD, the study found that there tended to be a decrease in the levels of certain types of bacteria known for producing short-chain fatty acids (SCFAs), which are important fuel and signaling molecules for our gut and brain. The study highlighted a few specific SCFA-producing bacteria that were lower in both the Parkinson’s and IBD groups.
Furthermore, researchers also found a reduction in the biological machinery responsible for producing the bacteria in both conditions. As SCFAs play a role in maintaining gut health and may have neuroprotective effects, these findings suggest that the depletion of SCFA-producing bacteria in people with IBD might increase their susceptibility to developing Parkinson's disease. A lack of these beneficial compounds could potentially impact brain health over time.
This research underscores the connection between our gut and our brain — often referred to as the gut-brain axis. It suggests that a healthy and diverse gut microbiome may be important for brain and gut health, and a lack of these beneficial bacteria could potentially impact brain health over time. However, more studies are needed to show whether interventions to change diet or microbiome could help with IBD or Parkinson’s.
Highlights
The study recruited 54 people with Parkinson’s, 24 people with IBD and 16 people without these diseases. The researchers used special techniques to identify the microbes that make up each participant’s microbiome. They also analyzed publicly available data from past studies of people with IBD or Parkinson’s.
They found previously unknown overlap between the gut microbiomes of people with Parkinson’s and people with IBD.
They found a decrease in the amount of certain types of bacteria known for producing short-chain fatty acids (SCFAs), which are important fuel and signaling molecules for our gut and brain, in both people with Parkinson’s and IBD.
Their findings suggest that the depletion of these important bacteria in individuals with IBD might contribute to an environment that increases their susceptibility to developing Parkinson's disease.
What does this mean?
This study has identified new shared features between the microbiomes of people with PD and IBD. Because there is a link between these two conditions, improving our understanding of the specific microbes involved in both diseases may potentially lead to new therapies.
While this research provides insights into the potential link between gut dysbiosis, IBD, and Parkinson's disease, more studies with larger sample sizes are needed to fully understand the complex mechanisms at play and whether any interventions could help.
What do these findings mean to the people with PD right now?
About 80% of people with Parkinson's experience gastrointestinal (GI) issues. These issues can develop up to 10-20 years before a PD diagnosis. Therefore, the gut microbiome is a ripe target for future treatments that could potentially stop or slow PD progression at an early stage.
However, the gut microbiome is very complex and unique to each person. If you are suffering from gastrointestinal issues, try eating more fiber-rich foods and less starchy ones, drinking more fluids and increasing exercise. Speak to your doctor before trying pro- or pre-biotic supplements that alter your gut microbiome, since they may affect people differently.
PD-related gastroparesis (the impaired ability to empty the contents of the stomach) and other GI issues can impact how medications are absorbed. People with gut issues may find PD medications such as carbidopa/levodopa take longer to take effect or seem less effective. Additionally, the medications themselves can alter the structure of your gut microbiome. Bring up any GI issues to your PD doctor who might refer you to a gastroenterologist, a doctor specializing in GI issues.
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.
Moving Day is an inspiring and empowering annual fundraising walk event that unites people around the country living with Parkinson’s disease (PD), their care partners and loved ones to help beat PD. Moving Day is more than just a walk. It’s a celebration of movement – proven to help manage Parkinson’s symptoms.
Leading up to the event, participants and teams fundraise to help the Parkinson’s Foundation provide everything people with Parkinson’s need to live better — from lifesaving resources to delivering quality care to more than 196,700 people living with Parkinson’s to improving Parkinson’s treatments through research.
Moving Day proceeds help bring quality care to more people with Parkinson’s, further Parkinson’s research, education and outreach initiatives. Moving Day raises awareness of Parkinson’s both nationally and in the local community.
Moving Day is an inspiring and empowering annual fundraising walk event that unites people around the country living with Parkinson’s disease (PD), their care partners and loved ones to help beat PD. Moving Day is more than just a walk. It’s a celebration of movement – proven to help manage Parkinson’s symptoms.
Leading up to the event, participants and teams fundraise to help the Parkinson’s Foundation provide everything people with Parkinson’s need to live better — from lifesaving resources to delivering quality care to more than 196,700 people living with Parkinson’s to improving Parkinson’s treatments through research.
Moving Day proceeds help bring quality care to more people with Parkinson’s, further Parkinson’s research, education and outreach initiatives. Moving Day raises awareness of Parkinson’s both nationally and in the local community.
How PD GENEration Accelerates Clinical Trial Recruitment
The Parkinson’s Foundation study PD GENEration: Mapping the Future of Parkinson’s Disease provides genetic testing and counseling that empowers people with Parkinson’s disease (PD) to discover new insights about their genetic makeup and their family’s risks. Its valuable data also connects people to research. But what many may not realize is that PD GENEration is also here to drive research towards a cure.
Next-generation clinical trials for Parkinson’s disease are targeting the genetics underlying the disease. These trials require participants to carry known genetic mutations to test the safety and effectiveness of these new therapies or drugs. Equipped with knowledge of their mutations, participants in PD GENEration can move science — and potentially a cure — forward by participating in trials that rely upon their unique genetic backgrounds.
How PD GENEration Helped Activate the ACTIVATE Trial
In 2023, the biopharmaceutical company BIAL began a clinical study, nicknamed “ACTIVATE,” of its promising new PD drug called BIA 28-6156. This drug was designed to restore the activity and function of a protein called GCase, which is impaired in people with Parkinson’s who have a mutation in the GBA1 gene. For that reason, the ACTIVATE study needed participants with PD and a confirmed GBA1 mutation.
“Finding enough patients with this mutation is a major challenge,” said Kathleen McKee, MD, MPH, Director of Movement Disorders at Intermountain Medical Center in Salt Lake City, UT. “If patients are not already identified through prior genetic testing, then you are looking at six months to a year to get all your patients through and test them, which is too slow for enrollment.”
Intermountain Medical Center was one of the healthcare sites that BIAL reached out to when it first began recruiting ACTIVATE study participants. Dr. McKee was tasked with finding which people with PD at their medical center had a GBA1 mutation and could be eligible for the study.
This task was made much simpler as many members of the center’s PD community had already received genetic testing and counseling through PD GENEration. “We were able to look at a spreadsheet and instantly identify all our PD patients who had identified their GBA1 mutation through PD GENEration,” said Dr. McKee.
With more than 24,000 people globally enrolled in PD GENEration and growing every month, this ease of finding eligible ACTIVATE study participants was likely accelerated for many other collaborating healthcare sites as well.
In just under a year, the BIAL study met its recruitment goal of more than 230 people with PD and a GBA1 mutation, an impressive feat in no small part due to PD GENEration. With the study designed to monitor BIA 28-6156's effects over a year and a half for each participant, initial results from this study are expected to be released in mid-2026.
Beginning the Path to a Cure
PD affects people in different ways, largely because of the wide range of genetic mutations associated with disease. Through PD GENEration, people with PD can not only better understand their personal diagnoses but also use that knowledge to help support studies investigating treatments designed for their specific PD mutations.
“I’m excited for PD patients to participate in trials unique to their mutation. I think this is how we will start to discover the cure for PD,. We will discover the cure for one genetic mutation, it will help us learn more about the disease overall, and for patients with that mutation it will be life changing,” said Dr. McKee.
Learn More
The Parkinson’s Foundation works to improve care for people with PD and advance research toward a cure. Learn more with these resources:
Discover how we are working to close gaps in knowledge about PD: Advancing Research
Learn about and enroll in PD GENEration — a global genetics study that provides genetic testing and counseling at no cost for people with Parkinson’s.
Living with Parkinson’s can make daily tasks more challenging—but with the right tools and strategies, you can stay safe and independent. This session offers practical tips to help you move with confidence and ease at home, especially if you live alone or manage most of your care. Join us to learn small changes that can make a big difference in your daily safety and well-being.
Speaker
Judith Sachs
Certified Dance for PD, Certified A Matter of Balance
There is no charge to attend, but registration is required.
Due to the nature of our social engagement programs and to protect the privacy of participants, we will not be recording or archiving these programs. By not recording, it's our hope that the program provides a comfortable environment that encourages meaningful participation.
For a long time, I knew something was wrong. Deep down inside I knew. My handwriting was getting bad, I had a tremor in my hand, my arms no longer swung when I walked, and I had trouble standing and walking because of my balance. I didn’t want it to be true. I prayed that it was not.
The first 10 years of my marriage was spent helping my Dad. He had Parkinson’s disease (PD). I did all the normal things a son would do. I did yard work, took him for haircuts and ran errands. I helped when I could. I was raising a young family myself and only had so much time.
We talked about support groups and clinical trials. He was set in his ways, hard and not willing to give. He told me that for him, going to a support group was like looking into his future. He didn’t need it.
Suddenly, my wife’s mother was diagnosed with Parkinson’s. I saw all the early signs and steady decline. I witnessed firsthand the impact and demands of being a primary caregiver that were placed on my wife.
I finally got up the courage to stop ignoring my symptoms. I had had enough of lying to myself and hiding it from others. It was time to get this out in the open. I have Parkinson’s disease. There, I said it. As it turned out, it was not a surprise to those who know me best.
The diagnosis was devastating, expected, but none the less devastating. I accepted it, after all I had been preparing myself for some time. What I didn’t expect, was the guilt I felt for my wife. I didn’t care about myself, but rather why was this happening to her? She cared for me and our family as we helped my dad. She cared for her mother for all those years, and now she was literally going to be caring for me. The guilt was overwhelming!
I was surprised; the basic treatment of Parkinson’s had not changed much since my dad’s diagnosis in the late 1980’s. A lot is now known and there are many new treatments to eliminate or reduce the symptoms. But for all intense purposes, you treat the symptoms. Slowing or halting the progression of this disease is still in the future. Everyone I talked with said, the single most important finding was to keep moving. If anything seems to slow the progression, it’s exercise.
My father and my mother-in-law both laid down and accepted it. I was not going to go without a fight. I was going to make the best of this situation. I am a firm believer that each life event is preparation for something else that will happen in your future. I am young, and in relatively good health, no heart problems, no cancer, good vitals and active. Surely, I’ve been placed into this position for a purpose?
As is her passion, my wife (she’s a librarian) immediately jumped into research mode. We set out to find the right doctor for us, and she started exploring emerging treatments and therapies. That lead us to clinical trials.
I knew nothing about clinical trials. How to find one, what was involved, what was expected, how long they lasted, the screening process, the commitment, the potential risks, the potential benefits and least of all what it would mean for me.
There are many places to look for clinical trials:
Once we contacted Quest, there was a screening process and a series of questions asked over the phone to determine if you are a potential candidate for a trial.
If you meet the criteria, you are invited to continue the qualification process, and an office visit is scheduled. The initial visit is generally a review of the information provided during the screening call and a physical exam.
An Informed Consent document is provided, which provides a detailed description of the specific clinical study. This tells you exactly what to expect and what is expected of you.
Assuming the screening process goes well, and you sign the consent form, a schedule is developed to meet the trial’s protocol. This details what is being done and when it will be. Phone calls, office visits and procedures. This schedule is different for every trial and reflects the study’s requirements and goals.
My PD research experiences have always been positive, I have received:
Early access to the newest drugs and therapies.
Access to expert medical care by physicians who are focused on advancing the treatment of Parkinson’s and have your best interest in hand and understand the ups and downs of PD.
Met others Parkinson’s patients on a similar journey, compared notes, created new friendships, realize that I’m not alone.
I have seen others that are in subsequent phases of a drug trial. Knowing I helped move that drug along earlier in its approval cycle.
As a patient volunteer in several trials, I have participated in simple trials that required a single office visit, drug studies that lasted 1 to 3 months and required several overnight stays and even completed a trial that required a 30-day inpatient stay.
I’ve got to tell you, my own fears and anxieties about doctors and medical procedures cause me more stress than the actual examination and procedure. I have consented to having my vitals taken, EKG’s, blood draws, CAT scans, MRI’s, DAT Scans, IV infusions and Lumbar Punctures. Not to mention the psychological evaluations and cognitive testing, which are more unnerving for me than any medical procedure!
Did you know that one of the biggest reasons bringing a new drug to market takes so long is the lack of patient volunteers to participate in clinical trials?
"Next to marrying my wife and fathering my children, participating in clinical trials is the single most rewarding accomplishment in my life."
I never expected this. I don’t do this to be the recipient of the advancement, but so others won’t have to endure this journey. I don’t kid myself. My Parkinson’s is progressing, and the development and approval of new drugs is a time-consuming process. This is my purpose!
My participation in clinical trials, overcoming my fears and anxieties, contributing to the advancement of a cure and knowing that my contribution to the Parkinson’s community may someday prevent others from having to walk this same path is my single greatest moment.
My wife and I act as a mentor team (person with PD and caregiver) for the newly diagnosed. We participate in a mentorship program and regularly learn from and reference Parkinson.org in emails and as resources to our mentees.
So, I end this by asking you to please consider volunteering for a clinical trial. We are on the verge of a cure. We need those both with and without Parkinson’s. Without your support, progress toward our common goal, a cure, will be slow in coming.
