YOPN’s Living Well Starts Here

 "We need to start moving away from the idea that there will be 'a cure.' There will be many cures, and all cures are not going to come in an equal way..." In this deep-diving episode, we sit down with Alberto Espay, MD to dig into what's really stalling the research community, how bad actors take advantage of the placebo effect, and what people with Parkinson's can do to push for change. ~~~ HOSTS ~~~ Melissa Livingston | @missmliv Esther Labib-Kiyarash | @shakinginmyboots1 Chris Sutphin | @cesutphin with support from hosting organization, Parkinson & Movement Disorder Alliance ~~~ GUEST ~~~ Alberto Espay, MD Professor and Endowed Chair of the James J. and Joan A. Gardner Center for Parkinson’s Disease at the University of Cincinnati Explore his work > ~~~ LEARN MORE ~~~ READ | The Science Behind Parkinson's from Cure Parkinson's UK WATCH | Parkinson's Research YouTube Playlist from PMD Alliance JOIN YOPN | PMD Alliance's Free Membership Program for People with YOPD Don't forget to follow, subscribe, and share! Because the conversation continues in the comments on Podbean, across social media, and in YOPN's Monthly Community Gatherings. Tell us what you think!

"If somebody has random OFF time, it's my failure. I'm failing as a physician..." In this validation-packed episode, we sit down with movement disorder specialist and researcher Rodolfo Savica, MD, PhD to get his perspectives on YOPD and the problems with the current care approach many were taught. Our guest this episode: Rodolfo Savica, M.D., Ph.D., Mayo Clinic   Young Onset Parkinson’s Network: https://yopnetwork.org/

With Valentine's Day coming up, we get into sex, intimacy, connection, and what it all looks like when you're living with PD. This episode is raw and deeply real, and it's packed with context that actually helps. If you've been wondering whether you're alone in this, you're not.

Join us as we explore alternative therapies for Parkinson's disease and share our experiences researching and trying various approaches and also fads. It's time to debunk the junk and separate fact from fiction.

Ray Dorsey and Michael S. Okun join the podcast for an in-depth conversation about their new book, "The Parkinson's Plan: A New Path to Prevention and Treatment." They share groundbreaking new research on Parkinson's disease and outline steps individuals and policymakers can make in advancing prevention, treatment, and ultimately, a cure.

In this episode, Simon Allard from Amneal Pharmaceuticals joins the YOPN podcast team to share his journey from neuroscience research to his role as a medical science liaison—and to give listeners a rare, behind-the-scenes look at how Parkinson’s drugs are developed, tested, and refined in real life. Simon unpacks the science behind preclinical research, the phases of clinical trials, and the differences between extended-release Levodopa formulations. He also explains how real-world feedback from patients and clinicians continues to shape dosing, safety, and access. Together with the hosts, Simon explores gaps in trial representation, the promise of wearable technology, and why open communication between clinicians, patients, and pharma matters. The episode highlights the vital role of patient advocacy, participation in research, and how the combination of effective symptom management and regular exercise can help people with YOPD live well today—while science pushes toward tomorrow’s disease-modifying therapies.

In this episode, Simon Allard from Amneal Pharmaceuticals joins the YOPN podcast team to share his journey from neuroscience research to his role as a medical science liaison—and to give listeners a rare, behind-the-scenes look at how Parkinson’s drugs are developed, tested, and refined in real life. Simon unpacks the science behind preclinical research, the phases of clinical trials, and the differences between extended-release Levodopa formulations. He also explains how real-world feedback from patients and clinicians continues to shape dosing, safety, and access. Together with the hosts, Simon explores gaps in trial representation, the promise of wearable technology, and why open communication between clinicians, patients, and pharma matters. The episode highlights the vital role of patient advocacy, participation in research, and how the combination of effective symptom management and regular exercise can help people with YOPD live well today—while science pushes toward tomorrow’s disease-modifying therapies.

Explore the challenges and triumphs of traveling with Parkinson's disease in this episode of the Living Well Starts Here podcast by the Young Onset Parkinson's Network.  Hosts Chris, Mel, and Esther share personal stories and practical tips for both local and international travel. They discuss the challenges posed by airports and transportation systems that are not disability-friendly, and offer strategies such as packing light, carrying medication in multiple places, and allowing extra time for everything. The conversation also covers the importance of comfort items, managing anxiety, and planning for dietary restrictions during travel. Additionally, Mel shares insights on family adventures and local trips, emphasizing the importance of preparation and adaptability. The episode also touches upon an upcoming retreat in Arizona and the importance of pushing through anxiety to create valuable memories.

Explore the challenges and triumphs of traveling with Parkinson's disease in this episode of the Living Well Starts Here podcast by the Young Onset Parkinson's Network.  Hosts Chris, Mel, and Esther share personal stories and practical tips for both local and international travel. They discuss the challenges posed by airports and transportation systems that are not disability-friendly, and offer strategies such as packing light, carrying medication in multiple places, and allowing extra time for everything. The conversation also covers the importance of comfort items, managing anxiety, and planning for dietary restrictions during travel. Additionally, Mel shares insights on family adventures and local trips, emphasizing the importance of preparation and adaptability. The episode also touches upon an upcoming retreat in Arizona and the importance of pushing through anxiety to create valuable memories.

In this discussion, Mel, Esther and Chris delve into the topic of mental wellness, sharing their personal experiences and challenges with mental health, particularly in relation to Parkinson's disease. They explore their histories with bipolar disorder and depression, the importance of mental health support systems, and coping mechanisms. The conversation touches on the stigma around mental health, the connections between mental health and physical diseases like Parkinson's, and the necessity for more integrated mental health care. The speakers advocate for greater awareness and accessibility to mental health resources, emphasizing the need for early intervention and support for both patients and their families.

In this discussion, Mel, Esther and Chris delve into the topic of mental wellness, sharing their personal experiences and challenges with mental health, particularly in relation to Parkinson's disease. They explore their histories with bipolar disorder and depression, the importance of mental health support systems, and coping mechanisms. The conversation touches on the stigma around mental health, the connections between mental health and physical diseases like Parkinson's, and the necessity for more integrated mental health care. The speakers advocate for greater awareness and accessibility to mental health resources, emphasizing the need for early intervention and support for both patients and their families.

Audio Only Explore the realities of living with Young Onset Parkinson's through candid discussions as our YOPN podcasters share the things they wish they knew at the time of diagnosis. This episode delves into the personal experiences of managing symptoms, the unexpected challenges such as anxiety, and the importance of exercise. You will gain insights into the emotional and physical challenges faced by those living with Parkinson's and the resilience it necessitates.  Hear from perspectives at different stages of their Parkinson's journey, discussing everything from advanced treatments like DBS surgery to daily lifestyle adjustments. They open up about their personal coping mechanisms, the role of community support, and the mental fortitude needed to persist.

Explore the realities of living with Young Onset Parkinson's through candid discussions as our YOPN podcasters share the things they wish they knew at the time of diagnosis. This episode delves into the personal experiences of managing symptoms, the unexpected challenges such as anxiety, and the importance of exercise. You will gain insights into the emotional and physical challenges faced by those living with Parkinson's and the resilience it necessitates.  Hear from perspectives at different stages of their Parkinson's journey, discussing everything from advanced treatments like DBS surgery to daily lifestyle adjustments. They open up about their personal coping mechanisms, the role of community support, and the mental fortitude needed to persist.

(Audio Only) In this episode of the Living Well Starts Here podcast, hosts Melissa Livingston, Chris Sutphin, and Esther Labib-Kiyarash come together to discuss Parkinson's Awareness Month and advocacy. The conversation delves into their personal journeys, approaches to advocacy, and the different ways they contribute to the Parkinson's community, both online and offline. Discover the power of social media in connecting communities and fostering support, and learn about the importance of advocating for oneself in medical environments. They share insights on how advocacy can start from small, personal actions and expand to influence larger communities. Join us as we highlight the importance of creativity, empathy, and personal experiences in redefining what it means to be an advocate for Young Onset Parkinson’s Disease.

In this episode of the Living Well Starts Here podcast, hosts Melissa Livingston, Chris Sutphin, and Esther Labib-Kiyarash come together to discuss Parkinson's Awareness Month and advocacy. The conversation delves into their personal journeys, approaches to advocacy, and the different ways they contribute to the Parkinson's community, both online and offline. Discover the power of social media in connecting communities and fostering support, and learn about the importance of advocating for oneself in medical environments. They share insights on how advocacy can start from small, personal actions and expand to influence larger communities. Join us as we highlight the importance of creativity, empathy, and personal experiences in redefining what it means to be an advocate for Young Onset Parkinson’s Disease.

(Audio Only) Join hosts Mel and Esther in this Valentine's Edition of the YOPN podcast as they discuss the intersecting themes of romance, love, intimacy, and Parkinson's disease. With humor and authenticity, they delve into the complexities of maintaining intimacy in relationships affected by Parkinson's, sharing personal insights and experiences. With humor and honesty, they discuss the various challenges that come with maintaining romantic relationships while managing Parkinson's, such as sensory issues, medication side effects, hypersexuality, and the impact on self-esteem.  They emphasize the importance of communication and routine, while also highlighting the often-overlooked topic of impulse control and its effects on personal relationships.  Tune in to hear about their personal journeys as they break down stigmas and offer insights into the importance of intent and ways to foster connection and joy amidst the challenges. This episode offers not only a real look into the difficulties faced but also the hope and strategies for maintaining strong, fulfilling relationships. (Audio Only Version)

Join hosts Mel and Esther in this Valentine's edition of the YOPN podcast as they discuss the intersecting themes of romance, love, intimacy, and Parkinson's disease. With humor and authenticity, they delve into the complexities of maintaining intimacy in relationships affected by Parkinson's, sharing personal insights and experiences. With humor and honesty, they discuss the various challenges that come with maintaining romantic relationships while managing Parkinson's, such as sensory issues, medication side effects, hypersexuality, and the impact on self-esteem.  They emphasize the importance of communication and routine, while also highlighting the often-overlooked topic of impulse control and its effects on personal relationships.  Tune in to hear about their personal journeys as they break down stigmas and offer insights into the importance of intent and ways to foster connection and joy amidst the challenges. This episode offers not only a real look into the difficulties faced but also the hope and strategies for maintaining strong, fulfilling relationships.

The YOPN Podcast is thrilled to welcome George Ackerman to our community. George a PhD, is a dedicated advocate for the Parkinson's Disease (PD) community. Following the passing of his mother, Sharon Riff Ackerman, on January 1, 2020, due to complications from Parkinson's Disease, George has tirelessly worked to advocate and educate everyone about PD. In honor of his mother's memory, George initiated a movement with TogetherforSharon.com, distributing wristbands to commemorate her legacy. Join us, sit back, and immerse yourself in this enlightening show as George shares his insights and experiences in the Parkinson's community.

The Young Onset Parkinson's Network is delighted to introduce Carl Beech, a prominent figure on TikTok and the Chief Executive Officer of Spotlight YOPD, a non-profit organization in the UK. In addition to his role as CEO at Edge Ministries, Carl wears many hats – he's an author, keynote speaker, leadership consultant, and broadcaster. Importantly, he is a passionate advocate for raising awareness about young onset Parkinson's. What sets Carl apart is his openness, exemplified in his role as an open book. In this interview, he candidly discusses the profound topic of forgiveness, steering away from the more common pursuit of revenge. Carl delves into various aspects of his journey with Parkinson's disease, shedding light on how he navigates and copes with the challenges it presents.

The Young Onset Parkinson's Network is privileged to present a touching interview with Gavin Mogan. Imagine the shift from being the one in need of care to becoming the caregiver, all the while maintaining a unwavering focus on the positive aspects of life. Just a couple of months ago, Gavin faced the heart-wrenching loss of his wife, Amy, after a year-long battle with brain cancer. Keep your tissues close as Gavin shares how his journey with Parkinson's has prepared him to navigate through this difficult time and beyond.

Anna Grill is the driving force behind the Young Onset Parkinson’s Network (YOPN). She was diagnosed with Young Onset Parkinson’s Disease (YOPD) at 38 while excelling in her career and juggling family life. After keeping her condition a secret for a decade, Anna publicly disclosed her diagnosis and noticed a lack of YOPD resources. This inspired her to create a community and provide support for those with YOPD in a positive environment. Anna is an advocate, a Parkinson’s Foundation volunteer, and an Ambassador for Supernus Pharmaceuticals, residing in Northern Virginia with her family.

This episode contains candid discussions about suicide and may not be suitable for younger audiences. The YOPN Podcast proudly features captivating interviews with two remarkable individuals, Susan Scarlett and BJ Bement. Susan Scarlett's love for life shines through every facet of her existence. She embraces roles as a wife, mother, daughter, sister, student, and friend. In 2015, she learned that she is also a Person with Parkinson's (PWP). Initially, the mention of "Parkinson's Disease" left her feeling numb, much like anyone else in that situation. However, Susan was swiftly enveloped by the love and support of her family and friends, rekindling her enduring smile. Her journey takes a remarkable turn as she shares her inspirational story, including her collaborative efforts with Robert Cochran, and the incredible challenge presented by her nephew, Adam, involving a nonstop, 65-mile swim, which became the focus of the award-winning documentary, "VICTORY SWIM." Benjamin 'BJ' Bement resides in Baton Rouge, LA, alongside his wife, Kelly. His Parkinson's diagnosis at the age of 44 in 2013 marked a turning point in his life. In just four months following his diagnosis, he shifted gears from self-pity to active advocacy. BJ has lent his expertise to organizations such as the Parkinson's Action Network, The Michael J. Fox Foundation Public Policy division, GE Healthcare, and the Parkinson's Foundation. His active involvement in the Gulf Coast Chapter of the Parkinson's Foundation is exceptional, having logged over 500 volunteer hours in the last fiscal year and earning the well-deserved title of Gulf Coast Chapter Volunteer of the Year. BJ is driven by a passion for brainstorming, thinking outside the box, and discovering innovative ways to uplift, support, and empower the Parkinson's community in Baton Rouge and beyond. Be sure to delve into BJ's incredible journey. #Parkinsons #PDawareness #ParkinsonsDisease #ParkinsonsCommunity #FindACure #ShakeItUp #BeatParkinsons #ParkinsonsSupport #PDWarrior #LivingWithParkinsons

In the second part of the Esther Labib-Kiyarash  interview, she delves into the topic of hospital and emergency care for Parkinson's disease patients, drawing from her extensive experience as a Certified Professional of Healthcare Quality, where she has worked in both hospital and ambulatory quality management. Her background involves composing plans of correction and executing transformative changes within healthcare settings. Tune in to gain valuable insights from Esther as she discusses her ideas for enhancing the care of Parkinson's disease patients through education and various other innovative approaches.

Welcome to the YOPN Podcast.  Our guest today is Esther Labib-Kiyarash, a Certified Professional of Healthcare Quality with extensive experience in both hospital and ambulatory quality management. Esther's specialties encompass regulatory compliance, all facets of Quality Improvement, Lean methodology, and Continuous Survey Readiness. Additionally, she brings her expertise in Patient Safety and Patient Advocacy to the table. It's important to note that Esther also faces the unique challenge of living with Parkinson's disease. Remarkably, Esther chose to retire in September 2023, at the age of 48, to devote her time and energy to patient advocacy. In this first part of our two-part series, we will delve into Esther's personal journey. Be sure to stay tuned for Part 2, where Esther will share insights on patient advocacy and the importance of coming together to advocate for the rights of individuals living with Young-Onset Parkinson's Disease (YOPD). Get ready for an insightful and inspiring conversation. Enjoy the show!

Welcome to the YOPN Podcast! Today's guest is Jennifer Gillick, Program Manager of APDA Northwest Chapter, in this episode she unveils YOPD-CON 2023: Your Gateway to Thriving with Young Onset Parkinson's Disease! Join us at the Four Points by Sheraton Hotel in Seattle, WA, on October 14th and 15th, 2023, for this APDANW-sponsored event. Discover a wealth of family-friendly activities like hiking and dancing, and don't miss the evening reception with complimentary appetizers. The full-day conference on day two delves into crucial topics, including healthcare, nutrition, and financial planning. Book your stay at a discounted hotel rate until September 21st, 2023. For inquiries, contact APDANW at 206-695-2905 or email [email protected]. Visit the website at bit.ly/yopdcon.

Today's episode holds a deeply personal significance for me. You see, I grapple with cognitive issues that make it challenging for me to articulate my thoughts clearly and concisely. It's essential to note that these issues aren't indicative of dementia or any similar condition. In fact, my thoughts remain as lucid as ever. However, after battling this disease for 17 years, I've encountered various hurdles when it comes to expressing myself effectively. This is where Robert Cochrane enters the picture, and he's been a game-changer for me and many others. Robert, with his impressive PhD background, is on a mission to teach individuals like me how to convey our thoughts and experiences through writing. Now, if you're part of the Parkinson's disease (PD) community, you've likely heard of Robert Cochrane, and for good reason. His expertise and dedication to helping people like me find our voice are truly remarkable. So, I invite you to tune in to this episode and take a journey with me. Let's explore how Robert's teachings have transformed my ability to express myself and connect with others in the PD community. I believe you'll find it not only insightful but also inspiring.