The Parkinson's Experience podcast

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 85 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