The Parkinson's Experience podcast

Sheryl Lowenhar
  • 2.3 (3)
  • Health & Fitness
  • Monthly

The Parkinson's Experience is a podcast hosted by a Person with Parkinson's (PWP) and based on her daily experiences. Listen in on her journey living with the disease and how she lives her best life with humor, generosity, empathy and knowledge. Her conversations with experts and patients like you are fascinating and authentic. They cover relevant topics from DBS (Deep Brain Stimulation) to exercise to diet to medications to much more difficult subjects like personal relationships. Of the few podcasts available on this topic, don't skip this one from the viewpoint of a patient. Thank you to my sponsor – Boston Scientific, the maker of Vercise Genus, a Deep Brain Stimulation or DBS system. To learn more about Parkinson's treatment options, please visit DBSandMe.com

  1. 1 day ago

    143 Why Am I Crying so Easily

    I cry readily and often and this is new to me. I rarely cried until about 5 years ago. Now I cry at commercials! Do you experience this?  I asked my support group and about half of us share the same feelings. What is happening? Parkinson's disease affects much more than movement. It can also change how we experience and express emotions. Some people living with Parkinson's find themselves tearing up more easily than they used to—during a touching movie, a meaningful conversation, a beautiful piece of music, or even a moment of kindness. These emotional responses can feel surprising, particularly when the person isn't necessarily sad. Research suggests that Parkinson's can affect the brain networks involved in regulating emotions. However, increased tearfulness can have several different explanations. Depression and anxiety may contribute, while another neurological condition called pseudobulbar affect, or PBA, can cause sudden, involuntary episodes of crying or laughing that may not match how a person actually feels. Researchers have documented PBA in people with Parkinson's, although estimates of how common it is vary considerably across studies. It is important to recognize that becoming more emotional does not automatically mean someone is depressed or has PBA. In this episode, we talk with movement disorder specialist, Dr. Ospina to better understand why this occurs and what therapy is available if this symptom is undesirable.  Most importantly, people with Parkinson's should know that emotional changes deserve the same attention and understanding as the physical symptoms of the disease. 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

  2. 20 Oct

    142 Planes, Pills & Parkinson's: Tips for Traveling

    Traveling with Parkinson's can require a little more planning, but it doesn't mean you have to stay home. In this episode, we talk about practical ways to make traveling with PD safer and less stressful—from preparing your medications and medical information to navigating airports, arranging assistance, managing long flights, staying comfortable, and planning for the unexpected. We'll share tips to help you feel more prepared before you even leave home. One of the biggest challenges when traveling internationally is medication timing. What happens when you're traveling to a destination that is several hours ahead—or behind—your normal schedule? We'll discuss strategies for maintaining your medication schedule across time zones, using alarms and timers, and making sure you have enough medication in case of delays or other travel problems. Whether you're flying across the country or around the world, a little preparation can go a long way toward making your trip more enjoyable. Hope these tips are helpful. https://www.michaeljfox.org/news/tips-traveling-parkinsons-disease 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

  3. 18 Sept

    141 Stay on Your Feet: Preventing Falls with Parkinson's

    If you have Parkinson's, chances are you've thought about falling—or perhaps you've already experienced one. A fall can be more than just a bruise or a broken bone. It can affect confidence, independence and the willingness to keep moving. And once you become afraid of falling, it can be tempting to do less, which can create its own challenges. For Falls Prevention Week, September 21–25, this episode looks at the connection between Parkinson's and falls. Why do we fall? What role do freezing, balance problems and medications play? Can exercise and physical therapy really help? And what changes can we make at home to reduce the risk? I spoke with Jennie Alex, PT at The Parkinson's Fitness Project and Daily Dose PD. She helped us understand balance issues in Episode 135. We explore these questions and share practical strategies for people with Parkinson's and their care partners. The goal isn't to stop living because we're afraid of falling—it's to find ways to keep moving safely and confidently. https://theparkinsonsfitnessproject.com/ https://www.dailydosepd.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

  4. 18 Aug

    140 ON, OFF, and Dyskinesia: The Medication Roller Coaster

    After living with Parkinson's for 10 years, I still struggle to recognize when I'm experiencing OFF time. And dyskinesia? I never quite know when it will happen or why. I'm sure I'm not alone. So, as part of our "Dr. Ospina Explains" series, I asked Dr. Ospina to break down the terms we hear so often in Parkinson's: ON, OFF, dyskinesia, dystonia, and more. She walks us through the medication roller coaster—what it looks like, why it happens, and how it can change over the years. She also explains how to tell the difference between OFF symptoms, dyskinesia, and dystonia, and why it's important to pay attention to more than just movement. Non-motor symptoms can also fluctuate with medication and may even signal an approaching OFF period before motor symptoms appear. This is an episode you may want to bookmark and come back to. Understanding these differences can help you recognize what's happening in your own Parkinson's journey—and, ultimately, better communicate with your care team about how symptoms are affecting your quality of life. 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

  5. 5 Aug

    139 The Future of Parkinson's Care Is on Your Wrist

    In our last episode, we featured a wearable device that uses gentle vibrations to help people manage Parkinson's symptoms and reduce anxiety. If you haven't listened yet, I encourage you to do so. It's a fascinating conversation about how something as simple as a vibrating wristband—BeechBand—may influence the brain in ways that help ease anxiety and tremors. Best of all, it's easy to use and fully refundable if it doesn't work for you in 100 days.. This episode also explores wearable technology, but with a very different purpose—one that could transform how we manage Parkinson's and partner with our healthcare teams. StrivePD, developed by Rune Labs, is an app that pairs with your Apple Watch to track movement, heart rate, sleep, and other important health data. It then provides easy-to-understand reports that highlight trends over time, giving you a clearer picture of how your Parkinson's is changing between doctor visits. Imagine arriving at your next appointment with objective, actionable information instead of relying on memory alone. That kind of insight can lead to more informed conversations and better care decisions. And this is only the beginning of what's possible with StrivePD. I thoroughly enjoyed my conversation with Rune Labs CEO Amy Gordon Franzen and learning about the future of digital health for Parkinson's. I think you'll find it both informative and inspiring. https://www.strive.group/ https://www.runelabs.io/post/strivepd-empowering-parkinsons-patients-with-personalized-insights amy@runelabs.io  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

  6. 27 Jul

    138 The Wearable That's Getting People Talking

    Today we're talking about BeechBand, a wearable wellness device designed to support people living with neurological conditions, including Parkinson's disease. If you've spent any time in the Parkinson's community lately, you've probably heard the name. Carl Beech, the co-inventor and founder, seems to be everywhere sharing the story behind this innovative wearable. Friends of mine who have purchased a BeechBand rave about the results. Carl regularly appears in my Instagram feed, and when I attended the World Parkinson's Congress (WPC) in May, his booth was consistently packed with people eager to learn more. It's clear that the word is getting out, and BeechBand appears to be gaining real momentum. I have to admit—I became a believer myself. In this episode, Carl shares the origins of BeechBand, the personal story that inspired its creation, and how the device is designed to help people with Parkinson's. Listen in to discover what makes this wearable so intriguing. You just might become a believer, too. https://www.beechband.com/pages/about 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

  7. 21 Jul

    137 Learning to Grieve, Learning to Live

    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

  8. 14 Jul

    136 Intimacy: Staying Connected Through Change

    Intimacy is one of the most important topics we can discuss, yet it's also one that I've hesitated to bring to this podcast. For many of us, it's still considered a taboo subject. But the reality is that intimacy and relationships are an important part of life for everyone—and they can become even more important, and sometimes more challenging, for people living with Parkinson's disease and their care partners. Since I'm certainly not the expert on this topic—and I'll admit it makes me a little uncomfortable—I've invited someone who is. Dr. Kelly Rees is a licensed sex therapist in private practice who has a remarkable ability to discuss intimacy in an open, approachable, and judgment-free way. In our conversation, she explains why nurturing intimacy is so important throughout the Parkinson's journey, offers practical insights for navigating the changes that can occur, and reminds us that connection comes in many forms. So, whether you're living with Parkinson's, supporting someone who is, or simply interested in strengthening your relationships, I think you'll find this conversation both informative and reassuring. Let's listen https://drkellyrees.com/ https://www.aasect.org/referral-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

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Ratings & Reviews

2.3
out of 5
3 Ratings

About

The Parkinson's Experience is a podcast hosted by a Person with Parkinson's (PWP) and based on her daily experiences. Listen in on her journey living with the disease and how she lives her best life with humor, generosity, empathy and knowledge. Her conversations with experts and patients like you are fascinating and authentic. They cover relevant topics from DBS (Deep Brain Stimulation) to exercise to diet to medications to much more difficult subjects like personal relationships. Of the few podcasts available on this topic, don't skip this one from the viewpoint of a patient. Thank you to my sponsor – Boston Scientific, the maker of Vercise Genus, a Deep Brain Stimulation or DBS system. To learn more about Parkinson's treatment options, please visit DBSandMe.com

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