The Parkinson's Experience podcast: Recent Episodes
Sheryl Lowenhar
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
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
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
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
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
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
Today we are going to describe and explain neuropathy. What is it? Why am I experience the symptoms? What causes the symptoms to come and go? Is it due to my Parkinson's disease or just old age?
This is the second of three episodes in the "Dr. Ospina Explains" series. In this episode, we learn all about neuropathies. So, if you have or had or anticipate having any tingling, numbness, burning, weakness is your feet or elsewhere, this is the episode for you.
https://www.apdaparkinson.org/article/peripheral-neuropathy-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
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
In this episode we explore Tai Chi for Parkinson's disease - how this gentle, low-impact mind–body practice can support people living with the condition. As we know, Parkinson's affects movement, balance, and coordination due to changes in the brain's dopamine system. We will highlight how Tai Chi's slow, controlled motions can help counter these challenges.
We spoke with a long time Tai Chi instructor who has modified his instructions to include all people with Parkinson's. He focuses on key benefits backed by research, such as improved balance, reduced risk of falls, better posture, and increased flexibility. He describes how Tai Chi emphasizes weight shifting, body awareness, and deliberate movement—skills that are especially valuable for individuals with Parkinson's. Other benefits may be cognitive and emotional, including reduced stress and improved focus.
Overall, Tai Chi is a complementary therapy—not a cure—that can be integrated alongside medical treatment to help manage symptoms and promote overall well-being.
Box4Bucks fitness challenge fundraiser. To donate click this link. https://give.michaeljfox.org/box4bucks
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
This is the first episode in a three-part series I'm calling Dr. Ospina Explains. In this series, we'll dive into topics many of you have been asking about recently. One of my favorite Movement Disorder Specialists, Dr. Ospina, has a wonderful way of explaining all things Parkinson's in terms that are easy for the rest of us to understand. I hope you'll tune in to all three parts as they're released — I truly believe you'll learn a lot.
We're starting with Botox. Like many people, I used to think Botox had only one purpose — cosmetic. But after speaking with Movement Disorder Specialist Dr. Marie Ospina, I learned that Botox can actually help treat several symptoms that occur in people living with Parkinson's.
You'll discover exactly what those symptoms are when you listen to my conversation with Dr. Ospina. I think you may be surprised — and you might even find yourself asking your MDS or neurologist whether Botox could help relieve some of your pain or muscle tightness.
Stay tuned!
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
The World Parkinson Coalition is bringing its triennial World Parkinson Congress to Phoenix in May 2026—the first time the Congress has been hosted in the U.S. since 2016. This is truly a can't-miss event for anyone in the Parkinson's community.
The Congress will bring together approximately 4,000 attendees from around the world, including researchers, healthcare professionals, people with Parkinson's, and care partners. It's a unique opportunity to learn about the latest research, emerging therapies, and the global effort to improve care—while also connecting with an incredible community of people and resources. Guest, Eli Pollard, describes the gathering as an opportuntity to cross pollinate ideas with peers around the world - all working to cure the disease.
I'm especially excited to share that I've been invited to serve on the local organizing committee and the support group leadership subcommittee. I can confidently say this will be an important and inspiring gathering of the world's Parkinson's experts, with some fun events mixed in as well.
📅 Mark your calendars: May 24–27, 2026 📍 Location: Phoenix, Arizona
Don't miss it—add it to your calendar and register using the link below.
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://wpc2026.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. 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/
While often overshadowed by better known movement disorders, dystonia affects thousands and can dramatically affect quality of life. This episode explains what dystonia is, why it frequently appears alongside Parkinson's, and what therapies - from medications to DBS to physical therapy – are helping people regain control.
So, listen on as a movement disorder specialist, Dr. Niemann, breaks down dystonia. He helps us understand symptoms, treatment options and everyday strategies for living your best life with dystonia.
https://www.barrowneuro.org/person/nicki-niemann-md/
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
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
Who doesn't like magic tricks? I love watching magicians trying to surprise the audience with their slight of hand tricks. Always fascinates me and asking how do they do that. What does this have to do with the Parkinson's Experience?
Well, my guest today turned to learning magic after he was diagnosed with PD and could no longer work as a nurse. Although his main symptom is bradykinesia or slowness of movement, he is able to perform magic with a little help from getting Deep Brain Stimulation surgery.
He performs and has recruited a community of magicians to join him is raising awareness of Parkinson's and fundraise for PD research. His organization is called Slow Motion Magic, and his book and fundraiser is called Conjuring for a Cure.
This is an inspirational, positive story you don't want to miss.
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.amazon.com/s?k=conjuring+for+a+cure&crid=4BAMLO9ZLUWQ&sprefix=conjuring+for+%2Caps%2C229&ref=nb_sb_ss_p13n-expert-pd-ops-ranker_1_14
https://slowmotionmagic.org/
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
I’ve been eager to share with all of you in podcast land some important information and history about what I believe is one of the key drivers in helping fulfill the Michael J. Fox Foundation’s mission to cure Parkinson’s disease. The Parkinson’s Progression Markers Initiative (PPMI), launched in 2010, is a groundbreaking study involving people both with and without Parkinson’s. It gathers data over time to help researchers better understand how Parkinson’s starts, how it progresses, and — most importantly — how to stop it.
Sound important? It absolutely is. And it’s still going strong, continually recruiting new participants to join its large and growing community of volunteers. The more data we collect through PPMI, the faster we can accelerate the path to a cure.
Maggie Kuhl and Alyssa O’Grady are at the heart of this effort — overseeing the data, bringing in new participants, and tracking the initiative’s progress every step of the way.
Listen to what the experts say about how you can contribute to the solution to the Parkinson's puzzle.
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.michaeljfox.org/ppmi
https://www.ppmi-info.org/
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
The range of symptoms and affected body systems in Parkinson’s disease is extensive. One area that is less frequently discussed is the vestibular system—the inner ear structure directly connected to the brain, responsible for balance and spatial orientation. When this system malfunctions, individuals may experience dizziness, balance problems and an increased risk of falls, highlighting its importance in your overall health.
With aging, the inner ear naturally becomes less robust. Although current research has not yet identified a definitive cause for the higher incidence of vestibular dysfunction in people with Parkinson's disease, effective interventions are available. In this episode, Christopher Taylor, Occupational Therapist at Mayo Clinic, will provide insights into the diagnosis and treatment options—namely vestibular therapy—that can assist with symptoms such as dizziness, gait disturbances, freezing, and postural instability.
This discussion aims to enhance our understanding of the crucial role played by the inner ear and its connections.
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://vestibular.org/
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
Where do you exercise? Is there a place you can take classes specific for people with Parkinson’s? Is it convenient? I know of only a handful of cities where there is a one stop fits all approach to PD wellness. Most are created and managed by someone stepping up and doing the work to make it happen for their community and beyond.
I am excited to highlight some of these magical places where people with Parkinson’s take classes designed for their needs, provide social support, and community. I am thrilled to bring. you this first magical place. It is in the greater the Austin, TX area and on their YouTube chamnnel. Power For Parkinson’s was founded by two women, Dr. Nina Mosier and Susan Stahl. They both had fathers with Parkinson’s and saw a need, so they found a way to provide research-based exercises while offering them for FREE. With nine locations, the classes are very accessible. Add in the YouTube channell with available streaming and on demand videos all for free, well that is magical.
After listening to my guest today, you are going to want to have a similar opportunity in your area as well. Listen on.
https://www.powerforparkinsons.org/
https://www.powerforparkinsons.org/youtubeq
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
Did you know there is a connection between loss of smell and Parkinson’s disease? In fact, it may turn out to be a predictor of the disease up to 10 years before a clinic diagnosis of PD. Here are some interesting stats:
- · 100% of major brain disorders are associated with smell loss
- · 96% of newly diagnosed people with Parkinson’s have lost some ability to smell
- · 70% of people living with smell loss don’t know it until they are tested
- · 50% of people over the age of 60 may be living with smell loss
I am fortunate to have spoken to a leader in the research of smell loss, Dr. Richard Doty. We had a fascinating discussion on smell loss and what it can mean for those suffering including a loss of taste which may lead to weight loss. Additionally, we chatted about the work the MJFF is doing with its landmark smell loss study through the PPMI program. Using Dr. Doty’s scratch-and-sniff test, PPMI hopes to help scientists learn more about this risk factor for PD. I’ve taken it twice. I don’t think I passed it.
https://www.michaeljfox.org/smell-loss-brain-health-request-your-smell-test
https://mysmelltest.org/mjffbsd
https://sensonics.com/product/smell-identification-test/
https://www.dbsandme.com/en.html
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
$41M, 41 days, 2800 miles. Those are the stats for Team Human Potential who competed in the World’s Toughest Row. The boat race happens annually and showcases teams of four, rowing across the Pacific Ocean from California to Hawaii. Patrick Morrisey with Team Human Potential became the first person with Parkinson’s to finish the race. They raised over $41M for the Michael J Fox Foundation for Parkinson’s research. Amazing.
We spoke with Patrick and his skipper, Brendan Cusick about their experiences, challenges, commitment, and learnings on the trip. What did it reveal about working together and becoming close brothers in the end? How did Patrick manage his symptoms while rowing and living on a small boat for 41 days? What did they learn about their mental and physicial limitations? What’s next?
Listen on to enjoy some time with this engaging, generous and courageous team.
https://humanpoweredpotential.org/
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
Have you heard about the new medication delivery systems or pumps recently approved by the FDA? It has generated a lot of buzz at support groups, clinics and social media. What do these pumps do that makes them different and a new tool for our Movement Disorder Specialist to use to help People with Parkinson's live well with Parkinson’s? What can you expect? When should I ask my doctor about if its right for me?
I asked Dr. Ospina these questions and more, including the new long-acting oral levodopa called Crexont. She has answered other important questions in the past and has a great way of explaining things so regular people can understand.
If you want to learn more about the pumps or even a recommendation of when to go from oral to pump to DBS, this is your episode.
https://www.vyalevhcp.com/
https://www.onapgo.com/
https://crexont.com/.
https://www.dbsandme.com/en.html
As the earth continues to get warmer and we see record high temperatures across the globe, scientists tell us that this pattern is going to continue and be more common. Higher temperatures, more frequently has led to more heat strokes and other conditions when people aren’t prepared for this situation. Additionally, people with neurodegenerative diseases like Parkinson’s are at greater risk for heat related complications,
A recent article published in JAMA Neurology, describes the issue, what to look for, and how we, as individuals and community, can help to prevent people from heat related complications. It was co-written by my guest today, Indu Subramanian, MD, a neurologist and movement disorders researcher at the University of California, Los Angeles (UCLA), and Al Saad, MD, a neurologist with expertise in climate change at the University of Colorado.
With summer around the corner, this is a great time to prepare for the heat and work with your healthcare team on a plan to prevent any heat related issues. We as a community need to look out for our neighbors, friends and family. Our neighbors may be isolated or scared if they have Parkinson's diseasae or are older. As a community, we should come together to identify people who may need our help during a difficult situation such as heatwaves and higher temperatures, especially in areas in the world where they are not prepared to assist. We should keep in touch, check in, offer some water.
Learn all about how to prepare, provent, find help as well as recognizing the symptoms of heatstroke on this episode of the Parkinson's Experience.
https://www.parkinsonsecrets.com/
https://parkinsonsnewstoday.com/news/heat-intolerance-rising-parkinsons-risk-climbing-temperatures/
https://www.uclahealth.org/providers/indu-subramanian
https://www.dbsandme.com/en.html
We are well into 2025 so saying Happy New Year is not appropriate anymore. I think now people are asking others how they are doing with their resolutions. I have just one goal this year and that is to learn something new. I’ll let you know how I do. Send me your resolutions in the comment section.
I am excited for you to listen to my conversation with Dr. Brian Fiske, Chief Scientist for the MJFF. I like to kick off the new year/new season with a medication update. This year we are going to get an update on the research landscape and what it means compared to previous years. There are therapies in various stages of clinical testing using several different therapeutic approaches. It is exciting to learn about what to expect in the future and how we all can contribute to move things forward faster.
Let’s learn from Dr. Fiske what we now know about the biology of Parkinson’s, genetics and the environment’s contribution, the advances in testing for a Parkinson’s diagnosis, and where we stand in slowing the progression of the disease.
This podcast is sponsored by CND Life Sciences, home of the Syn-One Test ® - the first commercially available skin-based test to help clinicians diagnose Parkinson’s and related disorders. CND Life Sciences supports the care of patients facing the potential diagnosis of a neurodegenerative disease. CND’s Syn-One Test® helps clinicians to diagnose suspected synucleinopathies using skin biopsies to detect, visualize, and quantify phosphorylated alpha-synuclein located in nerves in the skin. The Syn-One Test is performed in CND’s CLIA-certified and CAP-accredited laboratory located in Scottsdale, AZ.
https://www.michaeljfox.org/state-field
https://www.michaeljfox.org/ppmi
https://www.michaeljfox.org/trial-finder
https://cndlifesciences.com/
https://cndlifesciences.com/syn-one-test/
I had a random request from a listener a few months ago. She was struggling with her hearing and wondered if it could be another symptom of Parkinson’s. My first thought was no, I hadn’t heard of that before. But, I told her I would look into it. To my surprise, hearing loss and Auditory Processing Disorder (APD) is another gift PD can give.
So, let’s explore the what, how, and why People with Parkinson’s may experience hearing loss or APD. First we will learn about the differences between hearing loss and APD which is important to understand. I spoke with an expert on this topic who has a professional and personal connection.
Let’s listen to the discussion.
https://search.asu.edu/profile/192444
https://www.asha.org/
https://www.hearingloss.org/
https://www.dbsandme.com/en.html
As we wind down the year with a final couple of episodes, this may be the most important topic. November is caregivers’ awareness month. The Caregiver Action Network (CAN) mission is to promote resourcefulness and respect for tens of millions of family caregivers across the country. This not-for-profit organization is responsible for caregivers’ awareness month. It is vital that we recognize this important person in our lives. They are the unsung heroes in our journey with Parkinson’s or any other chronic disease. They are often overworked, overlooked, and overwhelmed. These important people are part of the care team and should have access to the resources and assistance they deserve.
So, let’s get some insight into the care giving from a couple of real-life caregivers who care for their partners with Parkinson’s. Each has a different situation determined by the progression of the disease, current working status as well as other factors.
This episode is for everyone. You never know when you might become a caregiver for a loved one. 17 Branches and the Parkinson’s Experience recognizes and appreciates all of you who care for your partners and your family.
Happy Thanksgiving. I am grateful for all the people who listen to the Parkinson’s Experience podcast.
https://www.dbsandme.com/en.html
https://www.caregiveraction.org/
https://www.parkinson.org/library/fact-sheets/coping-care-partners
https://www.pingpongparkinson.org/
This episode is one of the reasons I started this podcast called the Parkinson’s Experience. We have four people with Parkinson’s including myself sharing their lived experiences with all of you. The subject is the hacks we use to compensate for challenges we face while living our best life with Parkinson’s.
So, what is the definition of “hacks’? If you Google it, you will first see links to the HBO show of the same name. Not helpful for this purpose. Basically, most definitions I found were of negative connotations like hacking a computer or IT system. The word “hacks” in this context means shortcuts or tips. In other words, this episode is about the various strategies or compensations or adaptations people use to complete a task when their PD symptoms prevent them from accomplishing them they way they used to. For example, if you have trouble buttoning your shirts, what would be a hack you could use? Only wear shirts with no buttons? Do some hand exercises before buttoning? Allow more time to get dressed? Purchase a tool that helps you button our shirts?
What hacks do you use to get by? We all have them. I think you will enjoy listening in on the conversation the four of us had on this topic. I learned some new tips and insights. Frankly, it is very affirming to learn you are not alone and share the same struggles and same hacks with other people with Parkinson’s. As you listen, if we didn’t mention a hack you found helpful, please share in the comment section or on our Instagram or Facebook page. You can help out people in our community.
https://www.dbsandme.com/en.html
https://parkinsonsbuddynetwork.michaeljfox.org/v2/
After the series on Art Therapy, I was reflecting on all the great stories of how each guest truly benefited from their experiences with their mode of creative expression. It isn’t just people with Parkinson’s benefiting. Everyone can benefit from attempting a new art activity or going back to what you used to enjoy.
Then I started thinking what happens in our brains and body? How do these activities provide such joy and symptom relief? I spoke with the Chair of the Department of Neurosurgery at University of Arizona about the effects of the arts on the brain. Listen on to listen to our discussion.
https://neurosurgery.arizona.edu/profile/julie-g-pilitsis-md-phd-mba
https://www.dbsandme.com/en.html
I’ve had a wonderful time this summer speaking with people with Parkinson’s who have found joy, meaning and symptom relief using one or more forms of artistic expression - let’s call it art therapy. If you haven’t listened to the first three, please do. I found inspiration and information in each one. I hope you will as well.
This is the fourth episode in our art series and the topic is music. Just like the others we have discussed; music therapy involves no pills and side effects. There are ongoing research on music’s effect on the brain. We will have to stay up on the findings over time. For this episode, I interviewed a university dean with young onset PD who discovered the joy in making music. He learned how to play the guitar along with his daughter and good enough to perform with her on stage. Dean Cole is a force to be reckoned with and an established Parkinson’s advocate. Listen on to hear about his experience finding joy in making music.
https://www.schoolofrock.com/
https://pdwise.com/
https://video.austinpbs.org/video/the-only-day-we-have-qtwu1l/ ("The Only Day We Have" from PBS Austin
https://socialwork.utexas.edu/directory/allan-hugh-cole-jr/
https://www.dbsandme.com/en.html
Welcome to Part 3 of our series on the influence the Arts have on people with Parkinson’s and frankly most other conditions. It’s amazing what scientists are discovering about how much music, dance, painting, etc can be beneficial for brain health.
I’ve been humbled by our guests. The more I listen to these amazing, brave people, the more I’m impressed by their skills, reliance and courage. It takes guts and dedication to start something new or continue to hone your craft while managing a progressive neurodegenerative disease.
In this episode, we are really lucky to speak with a NY Times best selling author with a large fan base, Fiona Davis. She describes what it is like to write a novel and how it has helped her to manage her PD symptoms. I think you will be impressed. Listen on.
https://www.fionadavisbooks.com/
https://www.fionadavisbooks.com/newsletter
https://www.writingclasses.com/
https://www.dbsandme.com/en.html
Welcome to part two of our four-part series on the arts and Parkinson’s disease. If you haven’t listened to part one, you can definitely listen to this one but I encourage you to listen to part 1 on photography and hearing from our guest, Torrance York, who spoke passionately about photography and how it helps her gain perspective on her journey with Parkinson’s.
In this episode, I am thrilled to have Pat Beilman as my guest to discuss dancing and it’s benefits for PwP and others. Dancing can help with your coordination, balance, core strength and posture. It also provides a way to interact with others avoiding isolation. It can help build your confidence in walking. And, it can bring some joy into your life. There is an actual dance program just for people with Parkinson's disease called Dance for PD. If any of this resonates with you, keep listening.
https://danceforparkinsons.org/
handson4exercise@gmail.com
https://www.dbsandme.com/en.html
So, I hope you enjoyed the first episode in our four-part series on the Arts and their potential for a better quality of life for people with Parkinson’s. We are going to take a quick brake in the series since this is the 100th episode of the Parkinson’s Experience.
To celebrate and acknowledge he 100th episode, the interviewer became the interviewee. One of my fellow support group attendees and an upcoming guest on the podcast , asks if she could interview me for the 100th episode. So, we are reversing the mic. Let's learn more about the podcast and host, me, Sheryl Lowenhar.
But, before I share the interview, I often get asked what the most listened to episodes are. Great question so I looked it up. The Top 5 episodes of all time are: #76 PD Tech Remote patient monitoring, #62 What is it like living with PD, #64 What should I eat, #70 Parkinsonisms Explained, #67 PD Medication Review; the art and the science.
https://17branches.org
https://www.dbsandme.com/en.html
This episode kicks off our 4-part series featuring people with Parkinson’s who found one form of the arts to be helpful with managing symptoms and gaining perspective. We will explore four different art disciplines – photography, dance, writing and music. We wanted to hear directly from the person with Parkinson’s rather than an expert on the research on why the arts can be an important part of your Parkinson’s therapy. So, each episode will be a personal story about that person’s challenges and struggles with their PD journey and how each used a different art to find understanding, insights and joy.
Up first is an accomplished photographer whose work is in galleries and books. She will tell us how her perspective of herself changes after being diagnosed with Parkinson’s. This lead her to publish a book with photos which draw connections to her experience with PD.
This is a fascinating and interesting conversation about how you can use art to help in so many ways. For example, the art of photography in this case being used to visually confront the disease and learn to find calm and joy in the final product and the work to get there.
We hope you consider picking up a forgotten art interest or learn something new. It could bring you joy and help with your symptoms.
https://www.torranceyork.com/semaphore
https://www.dbsandme.com/en.html
Last episode we spoke with a MDS and Assistant Professor at Vanderbilt University about integrative medicine. This episode is a great follow up to the previous one. This time it is student at the University of Cincinnati leading the charge to bring an integrated approach to Parkinson’s care. She formed a not-for profit organization called Parkinson’s Together. It brings students from multiple disciplines to help with patient care. That may include law students, engineers, finance but mainly students interested in the medical field and with interest in helping others.
I had a delightful conversation with Mallika Desai about her efforts. She is a very dedicated, inspiring, smart young woman determined to make a difference in the quality of life for people with Parkinson's disease. We need more like her and her colleagues in our world. Enjpy the discussion.
https://parkinsonstogether.us/
https://www.dbsandme.com/en.html
What is integrative medicine and how is it different than what we are used to which is mostly silos of care and mostly Western medicine? My guest today will offer an alternative to this, a better way to treat a patient with a condition or disease.
Dr. Britt Stone, an Assistant Clinical Professor at Vanderbilt Medical Center, spent her pandemic time pursuing a fellowship in Integrative Medicine at University of Arizona. She will describe how clinicians can work together with the families of people with Parkinson’s to make for a better experience and a healthier outcome. She believes treatment should include prescribed exercise, a healthy diet and, possibly complimentary medicines.
We had a great discussion. She opened my eyes to possibilities and the team approach to a better quality of life. If you like what you hear, let’s see if we can change the healthcare system together.
https://www.vumc.org/neurology/person/britt-stone-md
https://www.herbsociety.org/
https://integrativemedicine.arizona.edu/health_hub/awcimagazine/what_is_integrative_medicine.html
https://www.dbsandme.com/en.html
In April 2010, Allison (Allie) Toepperwein experienced a tremor in her left hand while living in Austin, Texas after giving birth to her daughter. Around eight months later, in December 2010, Steven Eury noticed a tremor in his right hand while filming the birth of his son 1100 miles away in North Carolina. The following year, Steven received a diagnosis of Young Onset Parkinson's Disease (YOPD). It took another 4 1/2 years, and 2 1/2 months after Allison's divorce before she, too, was diagnosed with YOPD New Year's Eve of 2014.
Allison went on to make history by becoming the first person with Parkinson's to compete on the popular TV show American Ninja Warrior. She began blogging, delivering motivational speeches, and advocating for single moms, women, and young adults with diseases.
In May 2020, Steven, who had recently gone through a divorce, purchased property on a street named Allison. He intended to build a new home and embark on a fresh chapter of life with his children and his dog named Allie.
In August 2020, one of Steven's friends sent him a blog post written by a stranger named Allison, sharing her experiences of "Dating With Parkinson's." Steven felt an inexplicable connection and decided to reach out to her. Two months later, in October 2020, the two finally met. Two years later the couple were married. They now reside on the very street named Allison, alongside Steven's dog Allie, their three children, a cat, a bunny, and a new puppy.
In September 2022, the pair joined 10 other people with Parkinson's to run the Blue Ridge Relay, which is an arduous 208 mile relay through the Blue Ridge mountains, two states and more than 16,000 Feet of ascent.
Then, in December 2023, one week before Christmas, the couple created a new spark between them, by both undergoing deep brain stimulation (DBS) surgery. The couple had brain surgery on the same day, by Baylor's Dr. Sameer Sheth and team, in the same operating room, in the same hospital, Baylor St. Luke's Medical Center back to back. It is now considered standard of care for people with PD that qualify to have DBS.
Let’s check in with them and learn what it is like for the two PwP to live together and have surgery/recovery together.
https://litwithin.com/
https://www.youtube.com/watch?v=Xz0hlJ6mzD4
https://www.dbsandme.com/en.html
What stage are you in? Do people ask you that question? If so, do you tell them? Do you even know? What are the stages and what do they mean? Frankly, I have never asked my movement disorder specialist neurologist what stage I am in. I don’t know why. We have never discussed it. However, learning and knowing more about how your doctor is tracking the progression of the disease is, I think, important.
So, today we are going to speak with a movement disorder specialist. He will explain the stages of Parkinson’s disease. What they are and what that means to individuals and their families. I think you will find this episode interesting and helpful.
https://www.honorhealth.com/physicians/daniel-savitt
https://www.parkinson.org/understanding-parkinsons/what-is-parkinsons/stages
https://www.dbsandme.com/en.html
Earlier this season on episode number 088 titled “the Skinny on Skin” we learned about the various skin disorders that can manifest in people with Parkinson’s. Well, on the flip side, the skin is the largest organ in our body. It must hold all kinds of secrets to our health. It turns out alpha-synuclein gets deposited in the skin of patients with synucleinopathies, which includes Parkinson’s and related diseases. Therefore, a skin biopsy can be used to diagnose and confirm these diseases. Not only can this advancement in the diagnosis important, the skin biopsy can also be used to speed up clinical trials. The company leading the way with this procedure and process, CND Life Sciences, has only just getting started. They continue to investigate what the skin can provide clinicians and researches to help bring new therapies to market quicker.
The director of medical affairs for CND and a person with Parkinson’s explains how this all works. Listen on…
https://cndlifesciences.com/
https://www.dbsandme.com/en.html
What do you know about your gut? In the last several years, research has led us to a more detailed understanding of the role of the gut – which includes the stomach, intestines, and colon. This isn’t your father’s understanding of the gut. So, what does the gut have to do with it? It being the possible cause of many diseases including Parkinson’s disease.
In this episode we will learn about how the gut has a direct communication with the brain. We all know the saying, “follow your gut”. The direct connection explains why this saying is meaningful. In addition, we will learn the importance of a healthy microbiome - which is the bacteria living in your gut - and how we can make changes in our diet to help maintain a healthy gut. Most notably, we’ll learn what this all has to do with living our best life with Parkinson’s.
I hope you take the time to listen to this episode. It could improve your journey with PD.
https://foothillsneurology.com/staff/maria-ospina-m-d/
https://www.dbsandme.com/en.html
https://www.parkinson.org/blog/awareness/gut-brain-connection
The topic today is one of those difficult to discuss symptoms that most of us try to avoid and deal with it on our own. Not a great idea. So, let’s learn about and discuss our bladders. You might have an overactive one which is also referred to as hyperactive or underactive one also referred to as hypoactive. Unfortunately, the probably of anyone having bladder problems grows as we get older. However, people with Parkinson’s have an even higher incident.
Listen on to learn why bladder problems occur in people with Parkinson’s and treatments available. I think you will find the treatment my guest, Dr. Tory McJunkin, offers is unique and, possibly, a game changer for those needing some bladder relief. You could get your life and freedom back.
https://bladdercenter.com/
https://www.axonics.com/
https://www.facebook.com/BladderWellness/
https://www.dbsandme.com/en.html
Welcome to the third episode in our three-episode series on exercise. During the process of researching for this episode, I have found more and more studies showing that exercise does help reduce symptoms of PD. Very exciting to be able to take control of your journey by including certain exercises in your day and week. My guest today, Dean Laws, did just that. After a period of denial and apathy, his buddies, or mates since Dean lives in Australia, urged him to take control and start running again. They went even further and formed The Dean Team to support Dean and the whole PD community.
So, this is a story about the power of exercise and the importance of friendship, family, and the wider community. Listen on for a heartwarming dialogue with Dean. Plus, you will like his accent.
Welcome to our new listeners in Australia. Our journey is the same no matter where you live. We can all use each other’s support and share our experiences to live our best lives. Oh, and I hope you like my accent.
https://www.pitchinforparkinsons.org.au/event/dean-team/home
https://www.dbsandme.com/en.html
Welcome to part two in our series on exercise and how it has been proven to reduce the symptoms of PD. As one of my guests, Dr. Daniel Corcos, explains, “It is crystal clear, exercise slows the progression of Parkinson’s.” In this episode, Kristine Meldrum and Dr. Corcos, authors of the book “Parkinson’s: How to Reduce Symptoms Through Exercise,” continue to discuss the research and real life experiences of the positive effects realized from a personalized exercise “cocktail”.
What should PWP be focused on achieving with our exercise cocktail in order to maximize our time and the benefits? What are the recommended exercises, how do we measure progress, how many minutes do we spend on each part of the cocktail? I know I have been waiting for the answers to those questions. Now, I can find them in this book. And you, the listeners, can get some of the answers by listening on and the rest are in the book!
https://www.parkinsonsbook.com/
https://www.feinberg.northwestern.edu/faculty-profiles/az/profile.html?xid=29101
https://www.feinberg.northwestern.edu/research/podcast/can-exercise-slow-parkinsons-disease-progression-with-daniel-corcos-phd.html
https://www.dbsandme.com/en.html
OK, I know what you are thinking. Another exercise episode, really? Yes, but this isn’t your run of the mill plead for people with Parkinson’s to exercise more. Up until now, we have been told to exercise but not given any direction on which exercises are best for us. Recently friends recommended a book that is filling this deficit. It is based on research completed over 30 years in this area. As one of my guests, Dr. Daniel Corcos, explains, “It is crystal clear, exercise slows the progression of Parkinson’s.” I found the book very useful. The author, Kristine Meldrum uses real people with Parkinson’s stories to highlight the positive effects they benefited from their personalized exercise “cocktail”.
The book is titled "Parkinson's: How to Reduce Symptoms Through Exercise". My conversation with authors was wide ranging and long. So, it became two episodes. This is Part One - the first part of our conversation. Please look out for Part Two - the second half where we get more specific about the exercises that will help you the most in reducing symptoms.
https://www.parkinsonsbook.com/
https://www.feinberg.northwestern.edu/faculty-profiles/az/profile.html?xid=29101
https://www.dbsandme.com/en.html
Did you know that people with Parkinson’s disease have a higher risk of developing certain skin disorders than the rest of the population including melanomas? Have you had a skin issue pop up on you and not know what it is or how you got it? There is a good chance you were experiencing a manifestation of the Parkinson’s disease process or a side effect of the medication you are taking. Just one more thing to worry about. Right? On the other hand, our skin might provide a non-invasive way to help with the diagnosis of Parkinson’s disease and maybe shorten the clinical trial process.
On this episode, a Movement Disorder Specialist who has researched the dermatological conditions related to Parkinson’s disease and published an important scientific article on this topic will discuss the various skin conditions that PwP are susceptible to, how to prevent and treat them. He is going to give us the skinny on the skin! This might just answer the questions you have about that dark spot on your arm.
https://www.barrowneuro.org/person/nicki-niemann-md/
https://www.dbsandme.com/en.html
My guest from the last episode on Nutrition, Debbie Polisky, is back to talk about stress and stress management. Research has shown stress can reduce a person’s life expectancy. How many years are we losing is determined by other factors and lifestyle choices. However, I am pretty sure everyone experiences stress in their lives so this episode is important and relevant to all listeners.
Specific to People with Parkinson’s, we have many stressors that come with living daily with PD. And, there are other kinds of stressors in our lives – family issues, work issues, the weather, driving at night, horror movies, etc. Everyone’s reaction to stressors is different. How do People with Parkinson’s experience stress? How can we manage our stress better?
We get answers and tips from Debbie. Keep listening and find out!
https://www.wordsandhealth.com/en/home
https://nutritiontango.com/
https://www.dbsandme.com/en.html
It’s our first episode of 2024. How many of you have already stopped working on your New Year’s resolutions? History would suggest most people fail early. Some of you probably are striving to eat better for your Parkinson’s health and for your overall health. Therefore, it is the perfect time to discuss nutrition and diet. My guest is a dietician who helps the Parkinson’s community understand and practice good nutrition. She breaks down what is good and bad for us and why. She teaches how to shop for the ingredients that are healthy and suggests ways to throw together a meal quickly.
You can never know enought about nutrition. This episode is a great way to learn how food can be a part of your treatment and good for your overall health.
Don't skip this episode.
https://www.wordsandhealth.com/en/home
https://nutritiontango.com/
https://www.dbsandme.com/en.html
Well, I can’t believe we find ourselves at the end of 2023. Where did the time go? I hope you had a good year. It was a fantastic year for Parkinson’s research and for this podcast. We witnessed a breakthrough in the study of PD with the discovery of a biomarker and how to test for it. That is a game changer. And this is my 85th episode of the Parkinson’s Experience. I’m kind of an old pro at this (emphasis on old). Who knew?
On this episode, I follow up on this year’s first episode where I interviewed People with Parkinson’s on their New Year’s resolutions. Do you recall that episode in January? Episode 66 if you want to revisit. Who stuck to their goals for 2023? Who fell short? Who never even started? You’ll find out because I followed up with them in December. What about yours truly? You’ll hear my confession after you hear from the others. So, keep listening…
OK, let’s get listening!
https://www.dbsandme.com/en.html
This episode is about communication via your voice. Are you being heard? Speech issues is one of those symptoms People with Parkinson’s most likely will need to address as part of the journey with this disease. Does Siri or Alexa understand you? Is it frustrating to use these smart voice assistants? Well, my guests are working to change all of that.
This episode is about how technology may be able to help us with communicating when our speech isn’t as understandable as it once was. A very smart team at the University of Illinois Beckman Institute for Advanced Science and Technology is working to collect voice recordings that are being used to train AI technology how to recognize speech patterns from people who are having speech issues due to their disease progression including Parkinson’s, ALS, and stroke. They are partnered with all the big names in the tech world with the goal of improving the tech in order to improve our quality of life.
Let’s find out about this important effort and how all of us can get involved.
https://speechaccessibilityproject.beckman.illinois.edu/
https://www.dbsandme.com/en.html
When you or a loved one has a chronic condition, where do you go to find support, information and your “community”? People with Parkinson’s may not all have the combination of symptoms, but we are all better off when we seek out and find others like us who will be there for you and lift you up. I am grateful to have found a couple groups that have helped me along the way. I’ve formed friendships that go beyond the confines of my disease journey. As I have heard others say, I didn’t want Parkinson’s disease, but the Parkinson’s community is very special and caring.
I happened to randomly get introduced to and invited to join a women-only group which meets on Zoom every other week. Most of these women are located on the East Coast – mostly in the tristate area of NY, NJ, Connecticut. I love this group and the women. We have honest, open and real conversations, and we laugh. We are all there to support each other, share our experiences and help in any way we can. No topic is prohibited.
I so enjoy this community, I wanted to share with you. So, I asked four members of the group if we could record what our conversations are like and release it as an example for others to recreate if they want. What follows is this recording. I think you will really enjoy the conversation.
https://www.dbsandme.com/en.html
This episode is a feel good, inspirational story about the decision to have Deep Brain Stimulation (DBS) surgery. Basically, it’s brain surgery and a major decision. I have the privilege of knowing my guest today and have followed her decision-making process and outcomes. As we know, every person with Parkinson’s is different. However, the decision process will mostly be similar. We focus on that as well as her circumstances and outcomes.
This episode is for everyone – people thinking about getting DBS, people who haven’t heard about it and their family and friends.
https://www.dbsandme.com/en.html
Gene therapy has been a previous topic on this podcast. However, it was from a neurosurgeon’s perspective. I continue to be very excited about the possibility’s gene therapy might have for modifying the effects of Parkinson’s disease - stopping the progression. My guest and the company he works for are on the cutting edge of gene therapy research.
In this episode, I speak with someone in the trenches of making this possibility into a reality. So, what is gene therapy? How is it different from stem cell replacement? Where are we on knowing more about this therapy in treating Parkinson’s disease? What are the next steps in the research? How can you help make this a reality?
Let’s find out. Listen on.
https://www.prevailtherapeutics.com/
https://www.dbsandme.com/content/DBS-Patient/us/en.html/
One of the most important problems to solve in the treatment of a disease is to find out how to measure its status in the person. In order to do that you need a biomarker to measure. For example, we take a blood test to measure cholesterol. If it is higher than normal, the physician can prescribe a diet and medication to treat it. Then, measure it again to see if it is working.
Well, for Parkinson’s we didn’t have a biomarker. Diagnosis and progression of PD have been mostly measured subjectively with various visual tests by a neurologist. Something objective, like a biomarker, would be huge improvement. This year all that has changed when it was announced that a biomarker was discovered, and a test developed.
Finding a biomarker for this disease is a huge scientific breakthrough. It’s one that the Parkinson’s community has been waiting for and the MJFF has been working on for over a decade and one my guest has been working on for just about 10 years. She will explain how it was discovered, what is involved in the testing process and why we all should care.
Don’t miss this episode. It’s good news.
https://www.michaeljfox.org/news/breaking-news-parkinsons-disease-biomarker-found
https://www.michaeljfox.org/ppmi
https://www.dbsandme.com/en.html
Have you ever felt completely exhausted or fatigued during the day? Does this happen frequently? Not sleepy but totally fatigued or tired. Well, this could be one of those non-motor symptoms of Parkinson’s disease or a medication side effect or something else. Either way, it is really annoying and can affect our quality of life.
We discuss fatigue with an expert on the topic during this episode. He tells us what science has discovered about the causes of fatigue and what has yet to be learned. Listen to find out the difference between fatigue and sleepiness as well as possible treatments and lifestyle changes that may help. We tried to keep the conversation lively, so no one gets bored and nods off during this episode.
https://vivo.brown.edu/display/johfried
https://www.dbsandme.com/en.html
This is the fourth and final episode in our tech series. We could probably highlight many more innovative ideas and companies. It is a very exciting time for the use of technology in the treatment of Parkinson’s disease.
In this episode, we talk with a company whose product, StrivePD, is really cool and very useful. It is an app which communicates with the Apple Watch to monitor your motor symptoms throughout the day. You can monitor your symptoms, set medication reminders, and even share your progress with your care team using the app. Providing your neurologist with direct access to daily logs of your symptoms and medication adherence allows them to make appropriate adjustments to your care, and help you improve your well-being. The data from the Apple Watch is combined with data you input directly on the app like medications, how you feel and timing of symptoms. With this data, your care team will be able to help you manage your Parkinson’s better.
I also speak with a person with Parkinson’s about their experience using the StrivePD app.
Enjoy!
https://www.strive.group/
https://www.dbsandme.com/en.html
This is our third episode in our series on the topic of using technology to assist you along your journey of living with Parkinson’s disease. In this episode, I speak with a representative of a company offering a telehealth platform specifically for neurodegenerative diseases including Parkinson’s. We all quickly adopted to seeing our doctors via the Internet during the pandemic. Some of us grew to like it or even prefer it over in person appointments. It offers conveniency, expertise and a care team approach. Who might be interested in utilizing such a service? Anyone. More specifically, someone without easy access to a Movement Disorder Specialist in their area. Also, people who are looking for a second opinion. Or, someone who is finding it hard to get an appointment with their neurologist any time soon to discuss medications and other concerns.
Toward the end of the episode, I speak with a person with Parkinson’s who is a client of Synapticure, the telehealth platform, who lives in a smaller city in Georgia. Don’t miss her perspective.
https://www.synapticure.com/
https://www.dbsandme.com/en.html
This is our second episode in our tech series. In the first episode we introduced you to a couple of physical items developed to help People with Parkinson’s improve their gait and avoid freezing. The other episodes, including this one, will be more about using the internet and software/apps to help you and your doctor monitor your symptoms and provide you with the best care possible.
What if all you had to do is push a button and remote monitoring of your symptoms would begin? You and your doctor will know the exact times you are on and off – when your medicine is working or not. If you have dyskinesia or tremors. Information on your gait meaning an abnormal walking pattern. In this episode, I talk with a co-founder of NeuroRPM. They recently won FDA approval for their AI and data analytics platform for doctors, patients and partners. Basically, you wear an Apple Watch which communicates to an app on your iPhone and shares data with your doctor to assist with your care. It’s remote monitoring at its best.
I also had the privilege of speaking to a person with Parkinson’s who uses this technology. Find out what he has to say later in the episode. He is very insightful and a dedicated Army vet, a treasure and clinical trial advocate. Enjoy the show.
https://www.neurorpm.com/
https://www.dbsandme.com/en.html
We are kicking off our tech series with this episode. Technology has changed the way we interact with the world over the last couple of decades. The pace of change keeps accelerating. We can ask a small box any question and get an answer within seconds. We can pay for items with our phones. The list goes on. However, the healthcare environment hasn’t really caught up to the other sectors when it comes to using tech to assist consumers/patients in improving their lives. We have definitely seen tech improvements when it comes to surgeries like DBS as well as machines used for imaging. Yet, not much for the consumer/patient experience. Well, we at the Parkinson’s Experience found four companies determined to change all of that for the Parkinson’s community. And, don’t worry, these episodes will be easy to understand no matter what your tech skills are. Like Tech 101.
Up first is a company called Walk With Path. They invented a device that fits on top of any shoe and emits a light for people to follow. It is proven to help people with gait, freezing and other walking issues. Also, they are in clinical trials for ‘smart’ insole for the shoe to help with balance and mobility problems. So, your shoe will be communicating information to an app on your phone. Wow. It's high tech for your feet. Keep listening.
https://www.walkwithpath.com/
https://www.dbsandme.com/en.html
When we hear the word “rehab,” what do we think of first? Some might think of a place where addicts go to get clean. Others might think of traumatic injuries sustained in an accident and the road to recovery. And still others might think of the place you go after a hospital stay of any length.
In this episode, we will focus on rehab or rehabilitation for People with Parkinson’s no matter what the reason for which you were admitted to the facility. However, the principles we discuss are basically the same for any illness or injury. Rehab is the process of helping an individual achieve the highest level of function, independence, and quality of life possible. Rehabilitation does not reverse or undo the damage caused by disease or trauma, but rather helps restore the individual to optimal health, functioning, and well-being.
Let’s find out more and some specifics. This episode is for everyone. Best to understand it before you need it.
https://encompasshealth.com/
https://www.dbsandme.com/en.html
I really like the story you are about to hear. It’s uplifting because my guest is uplifting and inspiring with a nonstop positive outlook and genuine desire to help others. And, I also have come to love the sport of Pickleball. Pickleball is quite the popular sport and growing. About 48 million people in the US play. But, can it help with your Parkinson’s symptoms. Is it safe to play? Let’s explore Pickleball for Parkinson’s with my guest and find out. Oh, and be sure to listen to the end. We had a great conversation after we stopped recording. I’ll fill you on some more interesting facts about my guest toward the end of this episode. OK, as they say in Pickleball…dink on. For those who don’t play , Google it!
https://www.indypickleballclub.com/
httsDBSan
Pain. We have all felt it over the course of living our lives. However, it isn’t often discussed or attributed as a non-motor symptom of Parkinson’s disease. And yet, it can be one of those symptoms that most negatively impacts our quality of life. How common is it that people with Parkinson’s experience pain? Is it due to the disease or another cause? Does it matter in how to treat the pain? Where should we go for help?
In this episode, we talk with an expert specialist in pain management who will break down the five categories of pain in Parkinson’s disease and help us understand the treatment options for each of those categories.
Whether you have experienced pain in the past, present or not yet, you don't want to miss out on this very infomative episode.
https://pisapain.com/providers/efrain-cubillo/
https://www.dbsandme.com/en.html
Maintaining good overall health and quality of life is important to everyone. Part of the maintenance, my parents always taught me, is regularly visiting the dentist for cleanings and cavity checks. It turns out dental care is particularly important for people with Parkinson’s. Dental hygiene can be challenging for people with Parkinson’s due to their symptoms, both motor and non-motor like apathy and depression. It is so critical to have a healthy oral environment. An unhealthy one can lead to bigger issues. Luckily, there are solutions to some of these challenges. We will break it all down for you – what to avoid, what to anticipate, and solutions – in this episode. Keep smiling and listen on.
https://dbsandme.com
https://www.atsu.edu/arizona-school-of-dentistry-and-oral-health
It wasn’t that long ago that I heard the word Parkinsonism. What is that? Is that what I have? Why am I just now hearing this term? It turns out that a couple of friends were reassessed and found to have a different, but related, diagnosis than Parkinson’s disease. Each had a different variant of PD. There are several conditions that have similar symptoms as PD. They fall under the umbrella term of Parkinsonism. It is very important to get the correct diagnosis in order to get the appropriate treatment.
In this episode, Dr. Holly Shill, a Movement Disorder Specialist takes us through each of the Parkinsonism conditions, what are the symptoms, how to get an accurate diagnosis and how to treat each. We had a very interesting conversation on this topic. Take a listen.
https://www.barrowneuro.org/person/holly-shill-md-faan/
https://DBSandMe.com
Someone suggested I read a book titled “Dancing in Small Spaces.” I downloaded it from Amazon and read it quickly. It is a gripping true story of a couple’s life together. Leslie Davidson and her husband Lincoln get diagnosed with Parkinson’s disease and Lewy Body dementia, respectively, around the same time. Although it can be tough to read if you are currently a person with either Parkinson’s disease or Lewy Body dementia, in the end it is a story of love, support and compassion. I really wanted to speak with the author after I finished the book and bring the story to you, the listeners of the Parkinson’s Experience podcast.
What’s it like to be both a patient and care partner at the same time? How do you balance your needs with your partners? How do you make difficult, life altering decisions when you used to make them with your partner?
This is not a sad story although there are sad moments. It is a story of true love that you will be grateful you have read it. Listen on.
https://dbsandme.com
https://www.leslieadavidson.com/
This episode is about one person’s persistence, resilience, and positivity and how these characteristics can lead to be more friendly with your Parkinson’s disease. My guest has many amazing accomplishments that most of us will never even attempt but are interesting to learn about. The message he communicates to all of us is one of self-advocacy, exercise by doing something you like to do, and the importance of community and research.
I met Bill Bucklew through the Michael J Fox Foundation Patient Council. His story is inspiring in my opinion. He has walked across the U.S. and Great Britain, completed an Ironman, climbed Mt. Kilimanjaro, completed 11 triathlons and more than 40 marathons. Let's find out how and why he does it and how it helps him live his best life with Parkinson's disease.
https://www.uncorkedadventures.org/
https://www.dbsandme.com/en.html
https://www.michaeljfox.org/
It’s been over a year since we have focused an episode of the Parkinson’s Experience on medication. These episodes are always popular. Even if you think you know a lot about the choices available to treat the motor and non-motor symptoms of PD, I urge you to still listen in. There is always new information and new medications and something for everyone to learn.
So, my guest, a movement disorder specialist, and I discuss that getting the correct combination of medications for each individual is as much of an art as it is a science. We will cover most drugs available for both motor and non-motor symptoms, why and when to use them and possible side effects, and touch on meds in the pipeline working their way to the market (hopefully) – all in a short time span. It will be a little like speed dating. So, buckle up and keep listening. Enjoy the show and I hope this is helpful.
https://doctors.bannerhealth.com/provider/David+Shprecher/452122
https://dbsandme.com
Are you a resolution person? Do you set yearly goals for yourself each January 1st? Do you regularly accomplish your goals? Don’t worry, this isn’t an episode whose goal is to shame you into making resolutions.
It can be fascinating what people choose as their resolutions each year. Do they accomplish their goals? For the people with Parkinson's community, are their resolutions related to their journey with the disease?
What follows are six brave people with Parkinson’s who tell us their New Year’s resolutions. We will be checking in with them in December. That’s a lot of pressure. Want to play along? Send in your goals for the year via the comment section.
https://17branches.org
https://DBSandMe.com
This is our final episode of 2022 and we have covered a lot of topics this year and heard from a few of you as well. However, this topic is an important one to understand as we all keep our therapy options open. Neuromodulation, which mostly means neurosurgery and includes Deep Brain Stimulation, may be a perfectly normal option either in the short term or longer time frame. Neuromodulation is the technology that delivers treatment directly to the affected nerves. So, this may include gene therapy or stem cells in the future. It’s exciting to think about. Let’s find out more from our expert neurosurgeon, Dr. Jonathan Parker who is the Epilepsy and Functional Neurosugeon at Mayo Clinic, about the what’s available presently and what is on the horizon.
Warning – this episode is a bit longer than normal but well worth listening to the end.
https://www.mayoclinic.org/biographies/parker-jonathon-j-m-d-ph-d/bio-20537491
https://stanmed.stanford.edu/vibrating-glove-reorganize-neurons-parkinsons/
We weren't sure what the title of this episode should be at first. However, we get a lot of questions from fellow Parkies and others asking what they should eat for better disease outcomes. Thus, the title.
Have you ever wondered what would be a good diet for people with Parkinson’s? What foods to eat, what to avoid and why? Do you plan your meals to live your best life? How can a slight change in your food selection make a big difference in your overall outcomes? Well, this is your podcast. We speak with a registered dietitian who specializes in neurological disorders like Parkinson’s. And, we get specific recommendations for a diet that optimizes your health living with PD. By the way, most of what we discuss applies to the general population so tell a friend and family member to listen in as well.
https://www.eatright.org/
This episode is an important research topic. We interview one of the most significant and relevant brain and body donation research programs in the country. Some might find this topic tough to think about since people need to donate their bodies upon their death. However, it is one of the least selfish things to do.
Since the brain is difficult to study during the life of the person, it is crucial to research it after death. Therefore, this type of research is essential to discovering what causes Parkinson’s disease to develop therapies, hopefully, to slow the progression of the disease and to cure it. Listen in to learn about the program and what they have discovered and contributed to research thus far.
https://www.brainandbodydonationregistration.org/
This episode is an important research topic. We interview one of the most significant and relevant brain and body donation research programs in the country. Some might find this topic tough to think about since people need to donate their bodies upon their death. However, it is one of the least selfish things to do.
Since the brain is difficult to study during the life of the person, it is crucial to research it after death. Therefore, this type of research is essential to discovering what causes Parkinson’s disease to develop therapies, hopefully, to slow the progression of the disease and to cure it. Listen in to learn about the program and what they have discovered and contributed to research thus far.
https://www.brainandbodydonationregistration.org/
Each person experiences the symptoms of Parkinson's and living with Parkinson's uniquely and it changes as the disease progresses. So the saying goes "if you see one person with Parkinson's, you have seen one person with Parkinson's". No one can assume they will live the same as others with the disease.
However, what does it feel like to live with this neurodegenerative disease? Can it be described? Is it any different on a daily basis then how others feel?
We asked six people living with Parkinson's from different parts of the country, different ages and both genders one question - what is it like to live with Parkinson's? Their answers are insightful, emotional and honest.
We hope you listen to all six.
Each person experiences the symptoms of Parkinson's and living with Parkinson's uniquely and it changes as the disease progresses. So the saying goes "if you see one person with Parkinson's, you have seen one person with Parkinson's". No one can assume they will live the same as others with the disease.
However, what does it feel like to live with this neurodegenerative disease? Can it be described? Is it any different on a daily basis then how others feel?
We asked six people living with Parkinson's from different parts of the country, different ages and both genders one question - what is it like to live with Parkinson's? Their answers are insightful, emotional and honest.
We hope you listen to all six.
The headline read “Six marathons in six weeks.” That hooked me in. Then I read a person with Parkinson’s disease was the runner. Wow. I had to learn more.
Everyone reacts differently to the PD diagnosis. Some don’t know what to do or where to start. Some are in denial for as long as they can stay that way. Others tackle it with all they have and find they can take more control over their symptoms and life and accomplish more than they ever imagined with or without the diagnosis. This is the inspirational story about one of those guys - Joe Drake.
It starts with goal setting. Along the way, he determined Parkinson's "is all part of the adventure." Stay tuned.
https://joesgottarun.com/
https://www.facebook.com/joe.drake.391/
https://www.instagram.com/jddrake83/
https://www.uncorkedadventures.org/blue_ridge_relay/
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 about when, why, how of driving while diagnosed with Parkinson’s. OT's are the professionals who see patients about activities of daily living and are trained to test people on their driving skills. We discuss the testing process and the legal implications. Listen in. Some helpful links are below.
https://adaptivemobility.com/ot-driver-rehabilitation-specialist-directory/
https://impirica.tech/driveable/
https://driveablesolutions.com/
https://drivingtoindependence.com/
The topic of this episode is home safety and how we might think about what we can modify in our homes to be safer in them as we age or as our Parkinson’s progresses. I don’t think of myself as an anxious person or someone who worries excessively. However, I do like to have information stored away for when I need it. After speaking to our expert on this topic, I feel like I have a resource for when I need it.
The trick is to have someone help you figure out what modification you should consider making before you have a real need for them. For example, avoiding trip hazards if you are experiencing falls or are starting to have dizzy spells, adding grab bars in the correct areas if you need help standing, and carpet versus tile floors. I think you will find this episode very informative and, frankly, upbeat. With a few changes, your home sweet home.
I often get questions from people in the Parkinson’s community about various symptoms they are experiencing. Is it the Parkinson’s or something else they ask. I usually refer them to their neurologist. Recently, I had a few people ask about changes in their vision which led to challenges in their daily living. I had never thought about vision changes being a thing. So, I sought an expert to explain what vision changes may occur with a Parkinson’s diagnosis, why they may occur and what can be done about it. Whether you are currently having issues or not, I think you will benefit from the information shared in this episode.
https://www.pennmedicine.org/providers/profile/ali-hamedani
https://www.nanosweb.org/i4a/pages/index.cfm?pageid=1
What is Young Onset Parkinson’s Disease or YOPD? Are YOPD people experiences different than the majority who are diagnosis at a later stage in their lives? How do they manage all the other challenges and blessings that life offers while dealing with this progressive illness? How do you navigate life with the PD symptoms you are experiencing in an ever-changing environment?
We will answer these questions and more with an expert Movement Disorder Specialist, Dr. Sana Aslam, and an inspirational young woman living her best life with Parkinson’s.
More information on YOPD visit:
https://michaeljfox.org
https://parkinson.org
https://davisphinneyfoundation.org
For Kim Morgan:
@ahealthydoseofstyle
In this episode, we continue our discussion with Dr. Daniel Weintraub on the topic is mental health and the non-motor symptoms of mood disorders that some people with Parkinson’s experience. This is part two of our discussion. I hope you were able to listen to part one.
In part one’s episode, we got a general overview on the topic of mood and thinking disorders in Parkinson’s as well as more specific information on the symptoms of depression and anxiety and possible treatments. In this episode, we address the symptoms of psychosis and cognition along with their possible treatments. I hope you’ll listen and encourage friends and family to as well.
https://www.michaeljfox.org/symptoms
https://www.parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms/Cognitive-Changes
https://www.med.upenn.edu/geriatricpsych/clinicians_weintraub.html
Our next topic is so important we are taking two episodes to tackle it. The topic is mental health and the non-motor symptoms of mood and thinking disorders that some people with Parkinson’s experience. It is a very sensitive and tough subject for some people. However, I always subscribe to wanting to understand as much as I can about my condition in order to be best informed and prepared.
We have an excellent physician expert, Dr. Daniel Weintraub from the University of Pennsylvania, to walk us through this topic and the various disorders under the broader umbrella of mental health. First up in this episode, we get a general overview and then address the symptoms of depression and anxiety as well as possible treatments. I hope you’ll listen and encourage friends and family to as well.
https://www.michaeljfox.org/news/depression-anxiety
https://www.parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms/Depression
Here at the Parkinson’s Experience, we try to cover every topic that may help even one person out there in podcast land. So, that includes not just the clinical or physical issues that can arise and not just the social and mental challenges that can be difficult but also the financial and work-related strains that can exist for people with a progressive neurological disease.
That leads me to introducing this episode’s topic – Social Security Disability (SSD). Because most Parkinson’s patients are over 65 years old, this topic might not be discussed much within support groups. However, understanding the who, what, where and why of SSD might be a vital lifeline for the younger crowd as they manage their PD journey. Let’s chat with an attorney focused in this area to learn about this option and the process of applying. We learned a lot, hope you do as well.
http://www.injuredworker.com/
https://nosscr.org/
Summer travel season is around the corner. Although we are still Covid aware, it looks like travel is back. Whether by train, plane or automobile, Americans will be moving again. So, it is a fantastic time to check in with a Movement Disorder Specialist neurologist on how best to travel when you have Parkinson’s disease or are traveling with someone who does. We discuss general tips that can save time and frustrations as well as how to manage your meds. I get a lot of questions about the latter so stay tuned and take notes. I truly hope you can use this important information for your plans this summer or whenever you hit the road. OK, this podcast is ready for take off!
https://www.tsa.gov/travel/travel-tips/can-you-pack-your-meds-pill-case-and-more-questions-answered
OT is third in our 3-part series on the therapies most important to people with Parkinson’s. We covered physical therapy and speech therapy. If you haven’t listened to those two yet, please find episodes 49 and 51. They are very educational.
OT, of course, stands for Occupational Therapy. Wait, don’t stop listening. OT does not mean occupational training. It does mean therapy or treating patients how to recover and get back to doing their everyday activities. Occupational therapists like the one you’ll hear next listen to what activities of daily living you are struggling with and work with you to adapt and/or provide exercises to improve your abilities and live your best life with PD. Some common symptoms might be buttoning a shirt, cutting up food, handwriting or typing and brushing teeth. The good news is occupational therapists can and do help us with any and all of the struggles we come across on this journey. You just need to reach out.
For now, stay tuned to learn from the expert and hear a patient’s story.
https://www.lsvtglobal.com/
https://www.pwr4life.org/
https://www.honorhealth.com/neuroscience-institute
Next up is part two in our three-part series on the therapies that are important to understand if diagnosed with Parkinson’s disease. This episode we focus on speech language pathology or therapy. I am guessing a lot of this information will be new to most of you. It was to me.
The speech language pathologist professionals help with communications disorders, cognitive-communication disorders, voice disorders, and swallowing disorders. We may encounter any or all of these at some point on our journey with this disease.
So, listen in to learn from an expert speech language pathologist as she takes us through what to look out for and how to get help. We also hear from a real person with Parkinson’s tell her story on this topic. Enjoy!
https://www.lsvtglobal.com/
https://www.parkinsonvoiceproject.org/
So, listeners, we made it to the 50th episode of The Parkinson’s Experience podcast. Wow. I am absolutely thrilled to have made it this far and am encouraged that we will still be talking about our Parkinson’s experiences on this podcast for years to come. Of course, I couldn’t have done this without your support and the support of my exclusive sponsor, Boston Scientific. I am continuedly humbled and touched to learn from listeners who send in comments about how this podcast has made a difference in their lives. That is its purpose and mine. Please keep sending in your experiences and comments.
As promised, we are reversing the mic on this, our 50th episode. I become the interviewee. I asked Lindsay McGuire to be the interviewer. Lindsay is a big fan of the Parkinson’s Experience. She works with Boston Scientific Deep Brain Stimulation patients in Arizona.
Enjoy the conversation dear listeners.
We will resume our 3-part series on the rehab therapies with our next episode.
This is the first of our three-part series on the rehab therapies – physical, occupational and speech. All three of these therapies are extremely important throughout our journey with Parkinson’s disease. Most people with Parkinson’s will end up interacting with all three and the trained professionals in each discipline. Up first, physical therapy or PT. This might be the one you think of first when you think of rehab or symptoms associated with Parkinson’s. You may see your physical therapist more frequently than your neurologist some years, so it is important you understand the benefits and goals. We speak with a Doctor of Physical Therapy about the role of PT in our health outcomes and what to expect. We also speak with a person with Parkinson’s about her experience. Please listen on.
Links to find a physical therapist in your area who specializes in Parkinson's disease:
https://lsvtglobal.com
https://pwr4life.org
Someone suggested the title of this episode be “potcast” which would have been cute. However, this is a serious topic so we resisted the urge to be cute on this one. This is not an endorsement of a therapy for Parkinson’s (you should always speak with your doctor before taking any medication). Rather it is meant to be educational and informational – a good, quick reference to the use of cannabis in the treatment of some of the symptoms of PD. In fact, we have included important reference links in the episode description if you want to learn more. In this episode, you will learn from an expert about the science, research, chemistry, politics, and history of cannabis. We break down the differences between CDB and THC – both chemicals isolated from the cannabis plant but having different effects. We also discuss the percentages of people with Parkinson’s who use it or are open to trying. As of this recording, there are 46 states where medical marijuana is available. In nine states, marijuana is available without a doctor’s prescription. Each state regulates this industry differently, but all have designated and licensed dispensaries where residents can obtain the products.
We hope you will keep listening to this “potcast” to learn about the potential use of cannabis in treating some symptoms of Parkinson’s.
Here's a few articles for reference:
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Why Do Parkinson's Patients Use Medical Marijuana?
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1 in 5 Parkinson's Patients Use Cannabis
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Marijuana-Based Parkinson's Medication Moves Forward
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Fighting Parkinson's with Medical Marijuana
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Cannabis a "Viable Alternative" to Parkinson's Medication
Florida patients looking to get their medical marijuana cards can go to CannaMD.com.
The topic for our end of 2021 podcast episode is how the Veterans Administration in the U.S., services the needs of our veterans with Parkinson’s disease. And it is good news for our heroes. Additionally, everyone can learn something from our speaker, Dr. Paul Larson a neurosurgeon. It isn’t just for our vets and their care partners, friends, and family. Listen to learn more about the VA program called PADRECC and cutting-edge research that has helped all of us. It played a key role in bringing us Deep Brain Stimulation surgery and some awesome neurosurgeons.
https://www.parkinsons.va.gov/index.asp
https://neurosurgery.arizona.edu/profile/paul-s-larson-md-faans
Most of us people with Parkinson’s know that exercise is essential to living well with PD. We may not realize how important it is to exercise our brain as well. Yet, it is just as vital to challenge our brain as we do our bodies. Improvisation is a fun way to check this box. Improv might not be what you think it is. It isn’t stand-up comedy, and it really isn’t scary. It is an unplanned collaborative response to others using games and play to illicit reactions. Anyone can do it and it seems to improve quality of life.
My guests, Robert Cochrane and Susan Scarlett, will fill you in on how improv can and has helped People with Parkinson’s (and others) become stronger, more capable, more positive, and more self-confident person. Listen on to learn from a PhD candidate studying the effects of improv on quality of life for People with Parkinson's and from one of his improv/PD students.
You can find out more about Robert and his improv classes at www.yesandexercise.com
This episode introduces us to Palliative Care and is one of the most important topics we have covered on the Parkinson’s Experience podcast. Don’t be deterred by the subject. I guarantee you will learn a lot from our guest, and it will make you rethink how you manage your health and pick your care team. This is not about hospice care. Palliative care is defined as an approach to care that addresses the person as a whole, not just their disease. The goal is to prevent or treat, as early as possible, the symptoms and side effects of the disease and its treatment, in addition to any related psychological, social, and spiritual problems. As you’ll hear in this episode, perhaps a better, more acceptable term would be supportive care.
Why is boxing one of the exercises recommended for People with Parkinson's? The list of benefits from this fun fitness activity is long and includes a link to cognition, stretching, balance and strength. It's the whole package.
Learn more as you listen to the owner and head trainer of Pound Gym. https://poundgyms.com/
Also, 17 Branches is holding it's annual fundraiser, Box4Bucks, on October 23rd in Scottsdale, AZ and virtual on Facebook Live. For more information, visit https://fundraise.michaeljfox.org/box-4-bucks/
In the category of what treatment options are on the horizon for Parkinson’s disease, gene therapy is one of the exciting ones. It can also be difficult to understand what it is and how it might help our brain function more normally. Never fear dear listener, we found a guy, well a brain surgeon super smart guy, to explain it to us so we can get it. So, stay tuned as we learn all about gene therapy as a potential treatment for Parkinson’s disease and how close we are to possibly adding it to the options available to neurologists for helping all of us live a better life.
It’s been over a year since we have had an episode of the Parkinson’s Experience on medication. So, we are focusing this episode on motor symptoms medication and, specifically, medication to help during the "off times".
We begin the episode by having our Movement Disorder Specialist neurologist define off times and dyskinesias. Then, we break down the medications used during off times and for dyskinesias by category or mechanism of action.
This is a great reference and important information for all People with Parkinson's. Please share with your friends who have questions.
We often talk about exercise and activities as a great way to slow the progress of Parkinson's symptoms. Golf may not be one that comes to mind. Until now.
In this episode I speak with a golf instructor who specializes in the biomechanics of the golf swing. His father had Parkinson’s disease. This led him to a passion for helping PWP. It just so happens the correct way to stand and swing a club and even the best way to putt aligns with the best posture for PwP to help with balance, core, and flexibility. I’m a golfer but really didn’t think about it in terms of my Parkinson’s. It is good to know with a few changes, I could knock strokes off my handicap and continue to play longer. If you play golf, you are really going to learn something. If you don’t play, you will still learn a lot about your body, posture, balance, and gait. You may decide to pick up the game. It’s never too late.
I was introduced to my guest today by a past guest who takes her forced exercise cycling online classes for People with Parkinson's (PwP). Forced exercise isn’t exercise at gun point which is kinda what it sounds like. It is exercise with goals of hitting certain higher watts or rpms (revolutions per minute) so you maximize your heart rate. In other words, it isn’t sitting on a bike and reading a book.
You may have heard of the now famous tandem bike ride that changed the way some think about exercise as a benefit to PwP. Dr. Alberts at the Cleveland Clinic was cycling on a tandem bike with a PwP. He noticed improvements in her symptoms after the ride in which she was forced to cycle the speed he was setting. After studying the effects of forced exercise, it was determined that this type of exercise may help improve motor symptoms and cognition. Of course, it helps with your cardiac health as well.
Kathy Helmuth with Parkinson’s Cycling Coach explains it all - as well as the fun and social aspect of an indoor stationary cycling program. If cycling isn’t your thing, you will still learn a lot from Kathy. Or, you may end up online looking for a bike afterwards!
Kathy can be reached at kathy@parkinsonscyclingcoach.com or https://www.parkinsonscyclingcoach.com/
Welcome to the 3rd episode in our 3-part series on inspirational people living their best lives with Parkinson’s. We’ve highlighted a woman who climbed Mt Kilimanjaro and biked across Iowa 6 times and a woman who took up Ping Pong and won gold. She will be defending her title next month in Berlin. Good luck Margie Alley!
On this episode, we speak to an inspirational woman who took up painting after her tremor disappeared with DBS. She finds that painting is calming and helps with other symptoms. And, she has become a real student of her new craft – improving, exploring and being bold with her creativity.
The image for this podcast is one of her paintings. It depicts the mechanical hardware used during her DBS surgery.
Listen on. I hope this episode, as well as the others, inspires you to do something you haven’t done before.
The working title of this episode was "Ping Pong Phun". Instead we named it the same title as the guest's documentary which is a much better title and reflects our guest, Margie Alley's, motto.
This episode is second in our summer of inspiration series. We hope you listened to the last episode featuring an inspirational woman who climbed Mt Kilimanjaro after her diagnosis and has a great way of looking at life. On this episode, we speak with a woman on the opposite coast of the U.S. and took on the challenge of learning Ping Pong which led to a gold medal in an international tournament. She will be defending her title in Berlin this year. Talk about a challenge and an anxious provoking experience. Wow. Plus, there is a chance encounter and meaningful conversation with Michael J Fox which will turn out to be beneficial at a later date. Again, listen on and prepared to be inspired as our guest opens up about her life, what challenges she faces and how she found and uses Ping Pong to help.
We are in the middle of summer and a great time to listen to podcasts on those road trips, beach vacations and long walks. So, the Parkinson’s Experience has lined up an exciting three-part series featuring inspiring people living their lives with Parkinson’s disease.
Nan Little is my first inspirational guest. She asked a great question at the end of the episode - how are you going to live?
Everyone faces challenges in their life. Some face multiple challenges at once or over time. It’s what we do, how we react to these life challenges that matter. Nan Little is a woman who got busy after her Parkinson’s diagnosis and is a true inspiration. A self-described non-athlete, she has biked across Iowa six times and climbed Mt Kilimanjaro among other ambitious activities. She took what life gave her and decided to take control of her disease and work to help others do the same. I had been looking forward to speaking with her and she exceeded my expectations. Listen on and be prepared to be inspired.
Whether you can sing or can't hit a note. It doesn't matter to this exclusive club. You can only join if you are a Person with Parkinson's or a family member or friend. It's called Tremble Clefs and it's more than just singing.
Music therapy is at the heart of this wonderful program. Parkinson’s disease tends to decrease voice volume. A monotone voice quality is another common symptom. In this episode, we learn from an expert in music therapy, different than just singing, about how we can improve voice, rhythm, movement, breathing, posture, facial expression, and memory when we participate in a PD choir. Oh, and you’ll feel good as well from being part of a community all practicing the same songs and moving to the rhythm of the beat.
In this episode, we discuss not letting Parkinson's win. There is a new, make a wish type program for Parkinson's patients founded by a passionate advocate for the community and owner of a PD gym. What do you want to do again that PD has taken from you?
Exercise is the only thing proven to slow the progression of Parkinson’s disease. Regular listeners of “The Parkinson’s Experience” will know we have featured PD gyms across the country devoted to helping People with Parkinson's (PwP) fight the good fight. This episode will be different so please take a listen. It is very inspiring. Why? Well, the founder of DopaFit in Massachusetts who ,in addition to creating an amazing fitness center, has dedicated his life to Parkinson’s patients and has a passion for giving back to the community. Besides some of the normal activities like raising money and advocacy, he started an initiative to give PwP a chance to do something they once loved but thought they can’t do again. It’s called "Limitless". Warning: you might feel really good after listening to this episode – and inspired.
For more information on Dopafit and Limitless, please visit the website: http://dopafit.com/
What if a simple skin biopsy test could provide a deeper story about your health? The answers that the neurons in the skin can provide is amazing and has helped neurologists feel more confident in diagnosing a neurodegenerative disease like Parkinson’s. It certainly is less invasive than other tests used to confirm a diagnosis.
Why is this important? The earlier the diagnosis, the faster you and your doctor can start planning your treatment and path to better outcomes. Also, it provides a quick, painless way to understand if a medication in clinical trials is working. That can result in drugs making it to the market faster. Something we all would like to see happen.
In this episode, we speak with one of the neurologists behind this new testing technique. He explains the who, what, where, how and why the skin has the answers. He explains why we should pay attention to it. Even if you have a diagnosis, find out why this skin test may help physicians detect and treat neurodegenerative diseases easier, safer, and more effectively than ever before.
How’s your handwriting? Has it worsened over time? Mine has. In fact, that was one of my first clues that I may have Parkinson’s. Small handwriting is a symptom of PD and it can be frustrating. It may also mean a decrease in hand strength. Legible handwriting is still very important skill and a source of pride. In this episode we speak with a person who is dedicated to helping PwP improve their handwriting through workshops and workbooks and a PwP who has taken the classes. In a matter of a few weeks, people will be able to read your writing again.
People with Parkinson’s have a 2-9 times increased risk of falls than a healthy person of the same age. This can be due to freezing of gait which occurs in about 40% of patients on average. Do you experience times where you just can’t move, can’t just take the next step for short or longer periods of time? Let’s explore why and how you can help yourself without necessarily increasing or adding medications. In this episode, we will hear from the inventor of an innovative device to help with freezing and falling as well as a PD patient who uses it to maintain his active lifestyle.
More information visit: https://www.getnexstride.com/
Do people ask you to repeat yourself frequently? Do you think you are talking loud enough for others to hear? This is not uncommon in PwP. It has been estimated that approximately 90% of all Parkinson’s patients will experience speech issues at some point in their journey with this disease. Some people don’t know they are speaking softly and/or not clearly so others can understand. This can lead to poor communication and social isolation. Speech therapy can and does help. However, now there is a new wearable device available that is proven to increase volume and clarity in your voice. In this episode, we speak with a clinical speech-language pathologist and a PwP using this device.
In this episode we tackle the extremely important topic of caregiving. Being a caregiver or care partner is often challenging and offers its own journey. It can be exhausting, frustrating, fearful, painful, as well as joyful, hopeful and rewarding. This is true for all caregiving not just for our love one’s with Parkinson’s disease. Today you’ll hear from someone who has experienced all the humanness of being a caregiver and ended up making it her life’s work to help all of us with the complex feelings that come with being a caregiver. She has written best selling books on the topic and created an online community. We often say to PwP “you aren’t alone.” My guest today will tell you that is as important for caregivers.
As of today, there is still no objective test to diagnose Parkinson’s disease. While we wait for researchers to find a biomarker, there is an organization using dogs to sniff out and detect an odor associated with PD. Yep, you heard it right. The dogs are super smellers and can detect PD with a 90% or better accuracy. To learn more about this and what this means for diagnosis and treatment of PD, we talked with the program director and one of the dog handlers. You won’t want to miss this conversation.
There are numerous opportunities around the country to get educated on Parkinson’s disease. There are books, videos, webinars, websites, and educational classes offered by clinics and outreach centers, as well as national foundations and organizations. It is very important to start your education very soon after diagnosis and continue to learn the rest of your life. Today, I want to highlight two not-for-profit groups offering free educational classes to the newly diagnosed but with a twist – how to advocate for yourself along with educating yourself throughout your life. This is an innovative approach and an important combination. It’s the boxing equivalent to the one-two punch. Please keep listening.
In this episode we speak with Dr. Shill again to get an update on the COVID -19 pandemic, the vaccines and how this all relates to Parkinson’s disease. Dr. Shill gave us a fantastic overview in August 2020 in episode 11 if you want to revisit that one. Also, we are trying something new on this podcast. Listeners recorded and sent in their stories of how using Zoom has helped them through these isolating times. Their stories are included in this episode. Enjoy.
There is a special place in Portland, OR where an enthusiastic, trained fitness coach built a gym dedicated to helping people with Parkinson’s. She calls the people she trains – Fighters. That is very appropriate and sets the tone for what she expects from them. In one building they can take classes in drumming, singing, dancing, boxing, Tai Chi, yoga and more. 350 people take advantage of this opportunity to work on their physical and mental well being. Listen in as Kimberly Berg describes how she does it and one of her Fighters tells of her experience attending in person and now virtually.
In this episode we discuss the genetic connection to Parkinson’s. It doesn’t matter if you know you have a genetic mutual, if you know you don’t have one or you don’t know and don’t want to know, you will learn a lot about how the research into the genetic mutations linked to PD is leading to science better understanding of the origins of the disease and eventually a cure. We talk to a leading researcher at NYU about the connection. Also, we hear from a family who has a deep connection to the LRRK2 mutation and what that has meant to them.
Did you know that a dog can be trained to help People with Parkinson’s? It’s true and amazing to learn about. When trained to service PD patients, the dogs can help with freezing, mobility, exercise, get help, fetch medications, push a wheelchair, protect and provide comfort. Most of all they help restore dignity, confidence and independence. Stay tuned to learn more about these special animals. Warning: this is a tear jerker.
We have been tackling the decisions that people need to make for their healthcare insurance choices in our first series of episodes on a topic. Next up, long term care insurance options. There are 3 broad choices people can make. Which one depends on your situation. This is another very important, yet confusing life choice. Learn all about this important option in this episode.
Continuing our series on healthcare insurance options. Next up, Medicare. There are more choices than when your parents became eligible. In this episode, we learn from an expert on what option is the best one for your situation and when and if you can change your choice when your circumstances change. No matter what age you are, this is an important topic to understand. It can be very confusing. We break it down and make sense of the confusion.
This is the second episode in our series on healthcare choices and picking the best options for you. Next up – online pharmacies. Where do you get your medications? The ones you need to treat an ongoing condition. Most people use the corner pharmacy. It’s convenient. Have you wondered about switching to an online pharmacy? One that can source drugs from Canada and other countries with lower costs for their medications? Thousands of people use them and save a lot of money. Is it safe? How does it work? Stay tuned and find out.
Healthcare in the US and, more specifically, healthcare insurance is a very difficult, confusing and frustrating industry to navigate and understand. It can also be expensive. Yet, it is so important to our wellbeing. How do you make the best choices of you and your family? Even if this doesn’t affect you so much now, it will. Therefore, the Parkinson’s Experience will be producing its first series of episodes on one topic – understanding your healthcare insurance options. I guarantee you will learn at least one thing in each episode. First up, the individual marketplace for healthcare insurance.
Fundraising for PD research can be fun. This episode is a recap of the 3rd annual Box4Bucks fundraiser for MJFF. It includes interviews from the many stakeholders in the event. Listen as representatives from MJFF, sponsors and participants describe what this year's pivot to virtual meant to them and how much fun it can be to do good.
Fatigue, daytime tiredness, sleepless nights are experiences by a lot of people. It has a significant impact on their quality of life. For PWP, there is a 78% they will experience fatigue. Today we will learn more about this non motor symptom from a Mayo Clinic neurosurgeon researching fatigue in PD and if DBS can help.
Today’s topic takes us to the intersection of dancing and Parkinson’s disease. Dancing isn’t just another exercise recommended for PWP. Dancing combines the intense workout of an aerobic exercise class with other classes focused on strength, flexibility and balance. Plus, it is set to music and fun. The dancer needs to connect the mind with the body in order to perform the dance moves. Yet, PD dancing classes are for everyone and for all mobility levels. So, channel your inner Fred Astaire and keep listening to this episode to find out more from a PD dance instructor and student.
A healthy diet packed with nutrition isn’t just good for Parkinson’s patients. It’s good for everyone. However, there are a few changes you can make to your diet that can help with symptoms as well as your overall health outcomes. While there is no one-size-fits-all diet plan for PD, there are some guidelines we can follow to live our best life and enjoy some good meals.
Today, our guests will review general food categories, discuss organic foods versus non-organic and what incremental changes we may want to consider in our meal planning. Stay tuned!
In this episode, we will be speaking with a movement disorder specialist and a patient about the next generation of Deep Brain Stimulation technology – just approved by the FDA. This new BrainSense system is the next step toward a closed loop communication between brain activity and the smart software and hardware that can make a huge difference in a PD patient’s quality of life.
This episode is for everyone. It is about ending Parkinson’s disease. My guest is one of the authors of the newly released book appropriately titled “Ending Parkinson’s Disease.” In it, he and his colleagues describe some of the preventable causes of the disease and propose 25 concrete steps all of us can take to end PD. He takes us through how some of the same tactics were used to change the course of diseases like HIV, polio and breast cancer. It will be difficult NOT to be inspired to take action after listening to this podcast episode.
When I think of motivation and inspiration, whether in the context or not in the context of Parkinson’s disease, I think of today’s guest – Jimmy Choi. When I mention this to my non-Parkinson’s friends, they get excited because they think I know the famous shoe designer and just mispronounced his name. Nope. This Jimmy is truly an inspiration. As you’ll learn from listening today, Jimmy was in complete denial for about 8 years until something happened that shook him to his core and got him to focus on living his best life with PD. This is a very compelling story of denial to world record holder and TV phenomenon.
Our lives have definitely changed during this pandemic. In some respects, we are lucky that technology was ready to help us manage our lives while avoiding human contact as best we could. We can order groceries online, we can order meals online, we can stream movies and old TV sitcoms, we can have Zoom happy hours with long time friends, we can play Bridge online, and we can even visit with our doctors using software and mobile devices. This is called telehealth or telemedicine and it has been around for years. What are the advantages and disadvantages? Does it work for PD patients? What do you need to know to prep for a visit? Does your insurance pay for it? Our guest today is a MDS who has been using this technology for many years. She will share her experiences with this ever more important technology. Please stay tuned.
We may be all tired of hearing about the novel coronavirus – COVID-19. However, it is prudent to learn more about how it might affect the PD community specifically. What is known, what are we yet to learn? What should we be concerned about? Should we be more vigilant than the otherwise healthy population? What should we be doing to help ourselves through these challenging times? Don't miss this conversation with Dr. Holly Shill, director of the Muhammad Ali Parkinson Center.
Dr. Becky Farley is our guest speaker on this episode. Dr. Farley is the CRO/Founder of the Parkinson’s Wellness Recovery or PWR! and a well recognized guru in PD exercise. We also speak with the PD program director at a local JCC that offers PWR classes. We talk about why we should exercise and what we should be doing in this Part 2 of our exercise episodes.
Dr. Becky Farley is our guest speaker on this episode. Dr. Farley is the CRO/Founder of the Parkinson's Wellness Recovery or PWR! and a well recognized guru in PD exercise. We also speak with the PD program director at a local JCC that offers PWR classes. We talk about why we should exercise and what we should be doing in this Part 2 of our exercise episodes.
Getting enough exercise is important to every person for numerous reasons. However, for the Parkinson’s patient it seems to possibly be even more important. For the PD patient, muscle weakness, coordination or balance issues, fatigue, mood fluctuations and other changes that happen over time can be improved by adding exercises to your weekly routine.
In the next 2 episodes, we speak with well recognized PD fitness experts, Nate Coomer with the Parkinson’s Fitness Project and Dr. Becky Farley the founder of Parkinson’s Wellness Recovery or PWR!. Both have spent their careers working to improve the PD patient’s quality of life through exercise. We discuss not only why but what exercises are most helpful. And, how best to carry on when we are unable to go to a gym during the coronavirus crisis. You don’t want to miss these episodes.
Our first podcast episode covered the medications used for the motor symptoms experienced by Parkinson's patients. Back by popular demand, Dr. David Shprecher will explain the non-motor symptoms of the disease and what medications are used to treat each of these. This is a very informative episode you will want to listen to at least twice.
In this episode, we are talking with organizations well known for funding research in the Parkinson’s field – including The Michael J Fox Foundation and The Parkinson's Foundation. We speak with the experts about the future in treating the symptoms, halting the progression and curing PD. And, we will speak to a PD patient who has a fascinating story and readily participates in research. The more research participants we have, the faster the scientists can find answers to solving the PD puzzle and speed medication and device solutions to market helping us all. You don’t want to miss this episode.
In this episode of The Parkinson's Experience podcast, we continue our discussion on Opening Your Mind to DBS or Deep Brain Stimulation. In Part 1, a leading Movement Disorder Specialist discussed how DBS is a standard of care as well as who should consider it and why. In Part 2, we speak with one of the top neurosurgeons in the country to help us understand the surgery and devices. We also hear from two more PD patients and their inspiring stories of how DBS transformed their lives.
Let’s be frank. Deep brain stimulation or DBS is brain surgery. The old joke comparing various tasks to ‘not being brain surgery’ is meant to compare that task to the difficulty of brain surgery. However, in 2020, it is best to keep an ‘open mind’ to DBS.
DBS is now a standard of care for patients living with troublesome motor symptoms. As you will hear from our guests, DBS can transform lives by reducing or eliminating off times, reducing the frequency and dose of medications, and improving quality of life.
Once again, the interviews with experts and patients on this topic was so compelling and informative, we didn’t want to edit out much of it. So, there will be two episodes on the topic of DBS surgery. In this first one, we talk with a leading Movement Disorder Specialist in the US and two recent DBS surgery patients. In Part 2, we will speak with a leading neurosurgeon specializing in DBS surgery.
In this episode, we turn to the topic of Support Groups. We speak with a veteran support group facilitator about the importance of finding the right group for you. And, we speak to a couple who explain why they find their support groups invaluable. It is important that you know you are not alone in Parkinson’s. PD specific support groups are a great place to connect to your local community, find helpful resources, and provide a safe place for sharing experiences of what can be an isolating and challenging disease process.
Part Two of "If you have seen one Parkinson's patient, you've seen one Parkinson's patient" continues with interviews of PD patients and their care partners to find out what life is like after the diagnosis. Of note in this episode, we will hear from a PD patient living alone without a care partner.
In this and the next episode we will explore what "if you've seen one Parkinson's patient, you've seen one Parkinson's patient" means. We will be speaking with four different patients and their care partners. Their stories are so inspiring, relatable and entertaining that we decided to include all of the discussion and split it into two episodes. We think you will hear a bit of yourself in these stories as well as be inspired by some new ways of approaching this journey.
In this first episode of The Parkinson's Experience, we break down the available medications for the motor symptoms of the disease and what is on the horizon. You probably haven't heard this information explained in such an understandable way. Dr. David Shprecher, a Movement Disorder Specialist, is our expert guest.