The Parkinson's Experience podcast

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 

It is difficult to believe that in the over 100 episodes of the Parkinson's Experience, we have not talked extensively about gait and balance. Gait and balance is something a lot of us Parkies face at some point in our journey. This symptom can be very scary and life limiting and, therefore, important. Why does this happen and what can we do? I spoke with a researcher in this space, Dr. Dan Peterson, who has a lab and studies people with movement disorders and making some progress on finding some help. The discussion is next. Stay tuned.  Resources: FOG tricks & hacks paper : https://www.neurology.org/doi/10.1212/WNL.0000000000201159 Mancini article about gait: https://www.nature.com/articles/s41531-025-00897-1 Nice presentation by Bas Bloem (leading expert in PD, on the benefits of exercise generally for PD): https://www.youtube.com/watch?v=Q6d0J81VomY https://gaitandbalancelab.asu.edu/ 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/