The Parkinson's Experience podcast

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