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.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
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.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
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.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
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.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
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.
This guide is designed for veterans with Parkinson’s disease (PD) and their care partners. It covers frequently asked questions about Parkinson’s, as well as the specialized care and benefits available to many veterans through the U.S. Department of Veterans Affairs (VA). Inside, explore essential information about PD, tips for living well, an overview of resources and how to access support.
I was diagnosed with Parkinson’s disease (PD) in a strange way. I was at a pain clinic getting a steroid shot in my back when it was suggested that I should see a neurosurgeon. I agreed, so an appointment was made. When I met him, he kept looking at my hand. After a few minutes he stopped talking and said he wanted me to see a neurologist for an EMG (a diagnostic test that measures muscle response). Not being sure what that was I said OK, and another appointment was made.
When the neurologist appointment came, I met her and before the EMG I was asked many questions and went through a series of tests. Not really knowing why, but knowing there must be a reason, I complied. Finally, I had the EMG, and then a cognitive test.
She took very detailed notes the whole time and excused herself for a few minutes. When she came back, she said we had several things to talk about and proceeded to tell me that I had Parkinson’s.
My reaction was what it might feel like if you were hit in the face with a football. I never saw it coming.
The neurologist was very kind and explained what led to the diagnosis. It turns out the neurosurgeon noticed my tremors and sent me to her thinking that she needed to look further. It took me two weeks to process this information.
I was in complete denial but after that, I was able to take a physical therapy (PT) class designed for Parkinson’s called BIG movement. It has changed my life. It has been the best thing I could have ever done.
My outlook is positive, I am boxing now, I walk confidently, my balance is better. I participated in my first research study, the Parkinson’s Foundation genetics study, PD GENEration, because this hits as close to home as you can get. I want to do whatever I can to help find a cure so that hopefully no one in my family or anyone else’s family ever has to go through this experience.
I wanted to participate in this study for a couple reasons. The first was for my family. I felt it was important to find out if I had a genetic link to PD they wanted to know about. Once I submitted my genetic sample, I asked each person in my family if they wanted the results and told them I would respect their answer with no judgement. The second reason was for myself because having Parkinson’s has opened my eyes to just how much I have never known or understood, and more information could only help me.
It felt great to participate in this study because I felt that I was being proactive. For me, anything that can help get answers is one step closer to hopefully finding a cure for this disease.
I will tell anyone who is newly diagnosed, don't feel bad if you get angry, or are in denial, that's a normal response. In my area there is a wonderful group that I connected with that we meet once a month and share news about research we have found, diet, PT, anything. It’s great because we all understand where we are coming from without having to explain.
Parkinson's is hard but you don't have to travel that road alone even if you have family at home who help you.
Preparing for extreme weather is a burden for anyone in the path of a storm or fire. People with Parkinson’s disease (PD) and their caregivers should take these tips into consideration to ensure that all PD-related needs are accounted for when preparing for a hurricane or any other natural disaster:
Check all your medications. Take inventory of all medications and reorder any that are running low.
Write your medication list down. Write down or print a list of all your medications (not just PD medications). Include medication name, strength, times taken and dosages. This customizable medication schedule can help.
Make a list of your doctors. Make a list of your doctors and their contact information and take it with you if you need to evacuate before a storm.
Water and food preparedness. Medications may need to be taken with a meal and usually water. Calculate five gallons of water per person per day. Buy enough water and food to last three to five days.
Order or print your Hospital SafetyGuide in the event you need to educate an emergency responder or health care professional about your PD needs. Order one here.
Check in with your support network before and after. Arrange for at least one friend or family member to call you during a weather emergency, especially if you live alone.
Practice anxietyreduction techniques. The stress of possibly losing power or being evacuated could make anyone anxious, but stress can worsen PD symptoms. Download a meditation or breathing app or try to distract yourself by reading a book.
Know your nearest shelter. Visit the Red Cross website to find yours. Depending on where you live and your PD symptoms, you may qualify for a Medical Special Needs Shelter where you can get additional assistance with basic tasks.
Preparing for power loss:
Avoid overheating. If you lose air conditioning, monitor your body heat. Drink more than the recommended nine to 13 cups of water per day. Exercise in the early morning or late afternoon when cooler outside. Know the signs of heat stroke: flushed face, high body temperature, headache, nausea, rapid pulse, dizziness and confusion. If heatstroke is suspected, go to your nearest emergency room or urgent care for treatment.
Address lightheadedness. Many people with Parkinson’s experience Neurogenic Orthostatic hypotension (nOH), characterized by a drop in blood pressure when going from a seated position or lying down to standing. Exposure to heat can make nOH worse. If you regularly or occasionally experience lightheadedness or dizziness when you stand up, take extra precaution if you lose power and air conditioning by staying hydrated and standing up slowly.
Prepare your devices. If you have a deep brain stimulator (DBS), make sure your patient controller is charged. If you use a DUOPA pump, plan ahead to keep your DUOPA cassettes refrigerated. Call your doctor to ask if you should have extra oral medication on hand in case you are unable to use your pump at any point.
Preparing for an evacuation:
Write and follow a packing list. Make sure to include all medications, water and snacks.
Know your community response plan. Learn about your area’s response and evacuation plans before a storm hits. Find your state’s emergency management agency here.
Take all your medications in their bottles with you. Try to keep them all in one travel bag.
Take your walker, cane or wheelchair, even if you only use it occasionally.
Consider your devices. If you have a deep brain stimulator, remember to bring your patient controller. If your DBS neurostimulator is rechargeable, be sure that your recharger is fully charged and bring it along with the charging dock.
Download or order a Hospital Safety Guide today. Looking for more information about preparing for extreme weather with Parkinson's? Call our Helpline at 1-800-4PD-INFO (1-800-473-4636).
