The Parkinson's Experience podcast

For some reason, I've always been fascinated by grief and the grieving process. It seems to be everywhere—in the TV shows I watch, the podcasts I listen to, and the conversations I have with friends. Every one of us experiences grief, yet no two people grieve in exactly the same way. I've become curious about why that is and what we can learn from one another's experiences. That curiosity led me to attend a Support Group Leader session on grief at the World Parkinson Congress last May. One of the presenters was my friend, Karen McIntyre, who introduced an idea that really resonated with me: grief doesn't begin only when someone we love dies. For people living with Parkinson's, grief can occur every time they lose an ability that was once part of everyday life—driving a car, walking long distances, writing by hand, or even enjoying the smell of a favorite meal. What does that kind of grief look like? Is grieving the loss of an ability different from grieving the death of a loved one? Or do they share more similarities than we realize? To explore those questions, I invited Karen, who writes thoughtfully about grief on her Substack, to join me in interviewing an expert in grief and bereavement. Together, we discuss how grief affects all of us, why it takes so many different forms, and how people with Parkinson's and their care partners can better understand and navigate the losses that accompany the disease. This episode is truly for everyone because, at some point in our lives, we all grieve someone or something that has mattered deeply to us. https://clairebidwellsmith.com/ https://www.elegy.co/ https://substack.com/@inmyshoesmemoir Thank you to our sponsor – Boston Scientific, the maker of Vercise Genus, a Deep Brain Stimulation or DBS system. To learn more about the latest treatment options for Parkinson's disease at https://DBSandMe.com/17branches

I have told this story many times. After my diagnosis, my doctor wanted me to learn the "Big and Loud" program or LSVP. The physical therapist at the outpatient clinic saved my life. He told me I was going to live a long life and how to exercise Big. He told me to do something for my brain like play Mahjong. I followed his directions. I go to physical therapy every year to continue to work on balance, posture and gait. I think a good PT is a key member of your medical team. Physical therapy is one of the most powerful tools available for living well with Parkinson's disease, and in this episode, Dr. Jennie Allex explains why movement is truly medicine. As a board-certified neurologic physical therapist and Parkinson's specialist, Jennie shares how targeted exercise can help people maintain mobility, improve balance, reduce fall risk, and preserve independence throughout every stage of the disease. In this episode, we are focused on one issue which is very important to address – balance. It turns out there is a lot going on in your brain and body to keep you upright. Jennie discusses how Parkinson's affects the three systems that work together in order to prevent falls. She emphasizes how important it is to get an assessment from a qualified PT so you get the best treatment to improve your balance. The conversation explores practical strategies for balance while highlighting the importance of consistent exercise between therapy visits. Jennie explains how specialized Parkinson's programs, including evidence-based approaches such as PWR!Moves® and other Parkinson's-specific interventions, help retrain movement and build confidence. Whether you're newly diagnosed, have been living with Parkinson's for years, or care for someone with the disease, this episode provides practical, encouraging guidance on how physical therapy can help you move better, stay stronger, and continue living to the fullest. https://www.dailydosepd.com/ https://theparkinsonsfitnessproject.com/ Thank you to our sponsor – Boston Scientific, the maker of Vercise Genus, a Deep Brain Stimulation or DBS system. To learn more about the latest treatment options for Parkinson's disease at https://DBSandMe.com/17branches

I love bringing you innovative ideas that are improving the lives of people with Parkinson's—and this one truly surprised me. I never thought learning to play the harmonica would make the list, but here we are. In this episode, I share the story of an inspirational physical therapist in Hawaii who received a grant to study how learning the harmonica can impact speech in people with Parkinson's disease. Even though it was a small study, the results were encouraging, and he's now expanding his work to bring this creative therapy to more people. It turns out the harmonica isn't just about making music—it's a powerful tool for strengthening breathing, mouth muscles, and coordination, all of which are essential for clear speech. Similar to established speech therapies, this approach helps build vocal strength and breath control, but with a fun and engaging twist that keeps people motivated. To make it accessible, he's even creating a program-in-a-box that includes everything you need: a harmonica, a lesson book, and access to a companion website and YouTube tutorials.You have to listen to this episode—even if you're not musically inclined. This is about so much more than music; it's about discovering creative, effective ways to improve quality of life. https://harmonicaparkinsonsproject.com/ (Lauching soon) kevin.lockette@bsci.com (email address for our guest) https://store.bookbaby.com/Book/the-harmonica-parkinsons-project (purchase book) Thank you to our sponsor – Boston Scientific, the maker of Vercise Genus, a Deep Brain Stimulation or DBS system. To learn more about the latest treatment options for Parkinson's disease at https://DBSandMe.com/17branches

At the Parkinson's Experience podcast, we love a powerful, uplifting story — and this is one you won't forget. After battling Parkinson's disease for nine years, Hank Bode passed away in January 2025. Throughout that journey, Hank and his son Lincoln closely followed the work of the Michael J. Fox Foundation, inspired by its commitment to directing 100% of donations to Parkinson's research and its relentless pursuit of a cure. To honor his father and raise funds for Parkinson's research, Lincoln decided to do something extraordinary. As a member of Team Fox, he took on the World Marathon Challenge — running 7 half marathons in 7 days across 7 continents. Beginning January 31, 2026 in Antarctica, Lincoln raced through Cape Town, Perth, Dubai, Madrid, Brazil, and finished in Miami on February 6, 2026. For seven days his life was run, eat, fly, sleep then repeat. He pushed his limits, carried his father's legacy across the globe, and completed the challenge with a story that will inspire anyone facing adversity. You dont want to miss this one. https://give.michaeljfox.org/fundraiser/6877830 https://www.instagram.com/team.fox.777/ Thank you to our sponsor – Boston Scientific, the maker of Vercise Genus, a Deep Brain Stimulation or DBS system. To learn more about the latest treatment options for Parkinson's disease at https://DBSandMe.com/17branches

Do you have trouble sleeping? It's a topic you can't avoid once you reach a certain age. And while sleep problems are common in people with Parkinson's disease, they certainly aren't limited to them. Because of that, treatment is often the same as it is for anyone else. Until researchers uncover more specific biological causes in Parkinson's—progress is being made—we rely on standard, evidence-based treatments for insomnia. In this episode, we speak with an expert about one such treatment: a non-medication approach called Cognitive Behavioral Therapy for Insomnia, or CBT-I. It helped me tremendously, and I hope you'll listen. It may be something you want to try. https://cbti.directory/ Thank you to our sponsor – Boston Scientific, the maker of Vercise Genus, a Deep Brain Stimulation or DBS system. To learn more about the latest treatment options for Parkinson's disease at https://DBSandMe.com/17branches

This year I have been highlighting some of local areas in the U.S. where people with Parkinson's take classes designed for their needs, provide social support, and community. It is truly magical to have this kind of central location just focused on your needs as a person with Parkinson's. Just last month we highlighted Parkinson's Body & Mind in Connecticut. They have done and continue to provide spaces where PWP can gather for exercise, wellness and community programs – all for free. If you didn't listen to that episode, check it out soon. In this episode, we talk with the co-founders of InMotion, which offers community-based wellness programs for people with Parkinson's disease. They provide this service free of charge in the greater Cleveland area and online. They talk about giving People with Parkinson's the "power to change the script "and to "feel better every day." This is a true success story, and they continue to learn and grow. Learn more by listening to this conversation with Dr. Karen Jaffe and Ben Rossi of In Motion. How might you form a similar organization in your part of the country to provide valuable wellness programs and a greater sense of community? Thank you to our sponsor – Boston Scientific, the maker of Vercise Genus, a Deep Brain Stimulation or DBS system. To learn more about the latest treatment options for Parkinson's disease at https://DBSandMe.com/17branches https://beinmotion.org/

This year I have been highlighting some of local areas in the U.S. where people with Parkinson's take classes designed for their needs, provide social support, and community. It is truly magical to have this kind of central location just focused on your needs as a person with Parkinson's. If this exist in your area, like Power for Parkinson's in Austin and my guest today from Parkinson's Body & Mind in Connecticut, please take advantage of it. Exercise is the only proven way to slow the progression of the disease. Let's exercise and build a community together. Lynn Hagerbrant is the co-founder of Parkinson's Body & Mind. It is a not-for-profit organization that provides exercise classes in partnership with local YMCAs and now offer them virtually. They have a speaker series, support groups and mentorships. It is a one stop shop for PwP and their care partners. Most this is free for the PWP and their care partner removing a barrier for some to access these kinds of wellness programs. Learn more by listening to this conversation with Lynn. How might you form a similar organization in your part of the country to provide valuable classes and a greater sense of community? https://www.parkinsonsbodyandmind.org/ https://www.dbsandme.com/17branches Thank you to our sponsor – Boston Scientific, the maker of Vercise Genus, a Deep Brain Stimulation or DBS system. To learn more about the latest treatment options for Parkinson's disease at https://DBSandMe.com/17branches

September is Fall Prevention month. As we age, falling—or even the fear of falling—becomes increasingly common. For people with Parkinson's, the risk is often higher due to specific changes in the body that affect balance, strength, and coordination. Almost all of us will experience a fall at some point, which is why it's so important to understand your abilities, recognize your tendencies, and keep open communication with your neurologist and care team. The good news is that there are effective ways to improve balance, manage dizziness, and build strength. Prevention truly is key. Today, I have two special guests joining me: · Dr. Ospina, a Movement Disorder Specialist (MDS), who explains why people with Parkinson's are more likely to face fall risks as part of the disease process—and what's happening in the body that leads to falls. She also shares strategies and treatments that can help reduce those risks. · A home safety expert, whose company evaluates living spaces and provides personalized recommendations to make your home safer. Their process is clinically guided, ensuring that the solutions fit your individual needs. This service is incredibly valuable for anyone looking to prevent falls at home. As we recognize Fall Prevention Month, I'd love to hear from you. Do you have a personal story about a fall, or tips you've used to reduce your ownl risk? Please share your experiences in the comments section or email at info@17branches.org. Thank you to our sponsor – Boston Scientific, the maker of Vercise Genus, a Deep Brain Stimulation or DBS system. To learn more about the latest treatment options for Parkinson's disease at https://DBSandMe.com/17branches https://www.dbsandme.com/17branches https://measurabilities.com/ https://www.cdc.gov/falls/about/index.html

Listening to personal Parkinson's stories offers valuable insights for everyone. In this episode, we interview Greg Ritscher, who responded to his diagnosis with determination shaped by his business and personal experiences. Greg also shares a notable DBS story. His journey highlights motivation, positivity, community support, and advocacy. Enjoy our inspiring conversation with Greg. https://gregritscher.com/ https://www.dbsandme.com/17branches Thank you to our sponsor – Boston Scientific, the maker of Vercise Genus, a Deep Brain Stimulation or DBS system. To learn more about the latest treatment options for Parkinson's disease at https://DBSandMe.com/17branches

One of the possibilities along the Parkinson's journey is losing the ability to drive safely. This possibility is a scary one. For many, driving equals independence. So, it means more than just the hassle of getting around. It means losing your independence. It can lead to depression and anxiety. However, it is important to be safe on the road while driving a multi-ton vehicle. We must protect ourselves, our family, and others on the road. So, we are talking today with an Occupational Therapist who is so passionate about this topic that she started a business focused on helping people keep their independence if possible. She will take us through the when, why, how of driving while diagnosed with Parkinson's. OTs are the professionals trained to assess patients on activities of daily living which includes testing people on their driving skills. We discuss the testing process and the legal implications. There are many options for people once it is determined there is a driving defiicit. So, don't give up. Ask an Occupational Therapist for suggestions. Listen in to learn everything about driving with PD. https://drivingtoindependence.com/ https://www.aded.net/? https://www.dbsandme.com/17branches Thank you to our sponsor – Boston Scientific, the maker of Vercise Genus, a Deep Brain Stimulation or DBS system. To learn more about the latest treatment options for Parkinson's disease at https://DBSandMe.com/17branches

Do you have trouble falling asleep, staying asleep, getting enough sleep? Well, you are not alone. It seems lack of sleep is an epidemic in the US. In particular, getting a restful night's sleep is very difficult for the majority of people with Parkinson's. Why? What is going on and how can we improve our the quantity and quality of our sleep? This is a meaty topic to tackle. It is very important to understand it and make changes to improve your situation. Luckly, we were able to get a highly qualified expert on sleep disorders with experience helping people with Parkinson's. Dr. Joyce Lee-Ianotti is fantastic and speaks in layman terms so we can understand the information. If you have sleep problems or if you know someone who does whether you are a person with Parkinson's or not, this is the episode for you. https://dbsandme.com/17branches https://aasm.org/ for more information and to find a sleep specialist close to you. https://www.thensf.org/. Another resource https://www.barrowneuro.org/person/joyce-k-lee-iannotti-md-faan-faasm/. Our guest expert

This is a very important topic and one in which you can make a difference. Our environment is sickening the population. Parkinson's disease is one example of a condition that likely was caused by pesticides and other toxic chemicals in our water, food, air and soil. All of us can contribute to preventing future generations from getting Parkinson's and other diseases. Those already diagnosed may benefit as well. If we avoid these chemicals now, we may slow the progression of the disease just as exercise has been proven to do so. Bottom line: we need to work together to get these destructive chemicals banned forever. I spoke with Dr. Ray Dorsey on this topic. He and his colleagues have been sounding the alarm on all the ways certain chemicals are causing the increase in PD cases all over the world. Their first book, "Ending Parkinson's", started the conversation on preventing and treating the disease. In their new book, "The Parkinson's Plan", there is specific plan for each person or community to follow in order to live a healthier life and advocate for change to help prevent future generations from suffering due to exposure to these toxic substances. Listen on to hear Dr. Dorsey's passion and efforts to ban harmful chemicals still being used in our communities. Let's make our voices heard and advocate to ban pesticides and harmful chemicals. https://pdplan.org/ https://www.michaeljfox.org/news/national-plan-end-parkinsons-act-makes-progress-congress https://www.atria.org/ info@pdplan.org (Dr. Dorsey's email address) https://www.congress.gov/members/find-your-member https://www.dbsandme.com/en.html

Some of my favorite episodes are when we hear personal stories from people on the same journey as us. Every story is different but all of them can help us find our way, learn from each other and get motivated to live your best life. On today's episode, I have a conversation with Lisa Volenec. She was diagnosed as young onset PD which is defined as diagnosed at age of less than 50. It is estimated that only about 10% of the PD population is diagnosed with young onset. However, we know this is growing due to many factors including pesticides and our diets. This is a growing concern for health policy and community support organizations. Lisa represents this demographic. Still working at a TV station and under a lot of stress, you'll hear how she navigated her disease and employment over the years. How she came to a place where she decided to "own her truth." She will also open up about the decision to have DBS surgery and the outcomes from that. https://www.dbsandme.com/en.html https://www.michaeljfox.org/news/early-onset-parkinsons-disease https://www.3newsnow.com/rebound/positively-the-heartland/stunned-by-an-early-onset-parkinsons-diagnosis-omaha-woman-now-finds-purpose