Shows
YOPN’s Living Well Starts HereRay Dorsey and Michael S. Okun on "A New Path to Prevention and Treatment"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.
2025-12-1155 minYOPN’s Living Well Starts HereParkinson’s Clinical Trials, Wearables, and Advocacy: A Conversation with Simon Allard (Audio Only)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...
2025-09-2348 minYOPN’s Living Well Starts HereParkinson’s Clinical Trials, Wearables, and Advocacy: A Conversation with Simon AllardIn 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...
2025-09-2348 minYOPN’s Living Well Starts HereTravel and Adventure with Young Onset Parkinson's: Journey Tips and Tales (Audio Only)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 s...
2025-06-1334 minYOPN’s Living Well Starts HereTravel and Adventure with Young Onset Parkinson's: Journey Tips and TalesExplore 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 s...
2025-06-1334 minYOPN’s Living Well Starts HereFacing Mental Health Challenges: Personal Stories and Advocacy (Audio Only)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...
2025-05-1436 minYOPN’s Living Well Starts HereFacing Mental Health Challenges: Personal Stories and AdvocacyIn 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...
2025-05-1436 minYOPN’s Living Well Starts HereThings I Wish I Knew About Parkinson's (Audio Only)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 o...
2025-04-2433 minYOPN’s Living Well Starts HereThings I Wish I Knew About Parkinson'sExplore 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 p...
2025-04-2433 minYOPN’s Living Well Starts HereUnlocking the Advocate Within: Our Journey with Young Onset Parkinson's (Audio Only)(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...
2025-04-1144 minYOPN’s Living Well Starts HereUnlocking the Advocate Within: Our Journey with Young Onset Parkinson'sIn 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...
2025-04-1144 minYOPN’s Living Well Starts HereNavigating Love and Intimacy with Parkinson's: A Valentine's Edition Special (Audio Only)(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 t...
2025-02-1336 minYOPN’s Living Well Starts HereNavigating Love and Intimacy with Parkinson's: A Valentine's Edition SpecialJoin 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 c...
2025-02-1337 min2024-11-1556 min2024-11-1556 min2024-10-1555 min2024-10-1555 min2024-09-1142 min2024-09-1142 min2024-08-0847 min2024-08-0847 min2024-07-1745 min2024-07-1745 min2024-06-2646 min2024-06-2646 min2024-06-1230 min2024-06-1230 min2024-05-3141 min2024-05-3141 min2024-05-3041 min2024-05-3041 min2024-05-1552 min2024-05-1552 min2024-05-0146 min2024-05-0146 min2024-04-1458 min2024-04-0958 minYOPN’s Living Well Starts HerePerspective of a carepartner - George AckermanThe 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.
2023-12-011h 01YOPN’s Living Well Starts HereRhythms of Resilience: Navigating Life’s Challenges with Carl BeechThe 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 co...
2023-11-281h 01YOPN’s Living Well Starts HereUnveiling Resilience: Journeys Beyond ChallengesThe 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.
2023-11-1346 minYOPN’s Living Well Starts HereUnlocking Minds: Conversations That Inspire with Anna GrillAnna 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.
2023-11-0244 minYOPN’s Living Well Starts HereUnstoppable Stories: Susan Scarlett and BJ Bement on Life, Love, and Triumph Over Parkinson’sThis 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...
2023-10-2454 minYOPN’s Living Well Starts HereEsther’s Story Part 2In 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.
2023-10-1348 minYOPN’s Living Well Starts HereEsther’s Story: Part One of TwoWelcome 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 o...
2023-10-0431 minYOPN’s Living Well Starts HereThrive with YOPD: YOPD-CON 2023 Unveiled!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...
2023-09-2017 minYOPN’s Living Well Starts HereThe Parkinson’s Prison and the Hero’s Journey to EscapeToday'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...
2023-09-1254 minYOPN’s Living Well Starts HereA Journey through Parkinson’s, Pictures and Love in :”Personality Crash”The YOPN Podcast is proud to present award winning photographer Safi Alia Shabaik.
Check out her project Personality Crash:
"Personality Crash" is a touching project documenting the author's father's journey through Parkinson's Disease, dementia, and Sundowners Syndrome. Initiated in 2013 to bring them closer before the illnesses took their toll, it uses powerful photographs to illustrate the challenges of caregiving and the father's resilience. This podcast explores the project's emotional depth, portraying the universal themes of loss and love when facing debilitating diseases. It showcases how "Personality Crash" humanizes the experience of losing one's identity while...
2023-09-0551 minYOPN’s Living Well Starts HereWhat I Didn’t Say - A Journey Through Parkinson’s by Matthew MooreThe YOPN Podcast is excited to feature Matthew Moore, an actor, director, writer, and teacher who was diagnosed with Young Onset Parkinson's in 2019. Moore turned his diagnosis into an opportunity to raise awareness by writing the play 'What I Didn't Say - A Journey Through Parkinson's.'
The play offers a front-row seat to the roller-coaster life of a Parkinson’s patient and their care partner. It's a profoundly honest and compelling story that invites us to ask the hard questions about hope, perseverance, communication, and the staying power of real love.
As someone who has seen th...
2023-08-2240 minYOPN’s Living Well Starts HereFIVE YEARS LATER - ALLISON TOPPERWEINGet ready to embark on a captivating journey with the Young Onset Parkinson's Network in our podcast series, “5 Years Later” Join us as we reconnect with guests we spoke to over five years ago, who bravely share their experiences and provide valuable insights into the nuanced transformations they've encountered since then. Prepare to be enlightened as we delve into their extraordinary achievements, explore their mental well-being, uncover their exercise regimens, delve into their dietary choices, and go beyond. So, lean back, unwind, and get ready to be captivated by their truly inspiring stories.
Today's guest are Allie Topp...
2023-08-1456 minYOPN’s Living Well Starts HereFIVE YEARS LATER - JIMMY CHOIGet ready to embark on a captivating journey with the Young Onset Parkinson's Network in our podcast series, “5 Years Later” Join us as we reconnect with guests we spoke to over five years ago, who bravely share their experiences and provide valuable insights into the nuanced transformations they've encountered since then. Prepare to be enlightened as we delve into their extraordinary achievements, explore their mental well-being, uncover their exercise regimens, delve into their dietary choices, and go beyond. So, lean back, unwind, and get ready to be captivated by their truly inspiring stories.
Today's guest is Jimmy Choi...
2023-08-0148 minYOPN’s Living Well Starts HereParkinson’s, Bats and Crop Protection. Unveiling Nature’s Solution to Pesticides.Welcome to the YOPN Podcast, where we are thrilled to bring you a special guest, Dr. Merlin Tuttle. Known as "Batman," Dr. Tuttle has dedicated over six decades to the study of bats. As seen on the Joe Rogan Experience and David Letterman, he joins us today to share his insights. Despite his diagnosis of Parkinson's, Dr. Tuttle continues to contribute valuable knowledge to the field.
During our conversation, Dr. Tuttle enlightens us on how bats excel at safeguarding our crops, surpassing the effectiveness of chemical solutions. He also delves into the topic of bat houses, shedding...
2023-07-1458 minYOPN’s Living Well Starts HereSmiling through Parkinson’s: Unmasking the JourneyThe Young Onset Parkinson's Network (YOPN) Podcast is thrilled to present Lucy Jung, the CEO of Charco Neurotech (https://charconeurotech.com/)
Charco Neurotech is a medical technology company focused on improving the quality of life for individuals with Parkinson's disease. Their mission is to bring back smiles to those affected by the condition. Inspired by Professor Charcot's research on vibratory stimulation, they have developed the CUE1 device in collaboration with people with Parkinson's. By incorporating diverse skillsets and listening to the needs of the community, they aim to create simple, non-invasive technologies that can alleviate movement symptoms...
2023-06-2847 minYOPN’s Living Well Starts HereVoices Unveiled: Breaking Barriers with Speech AccessibilityThe YOPN Podcast is proud to present Mark Hasagawa-Johnson and Clarion Mendes as we discuss the Speech Accessibility Project
The Speech Accessibility Project aims to collect diverse speech samples to improve the representation of speech patterns in machine learning models. UIUC researchers will recruit paid volunteers to contribute recorded voice samples, creating a private dataset. This dataset will be used to train machine learning models and enhance their understanding of various speech patterns, starting with American English. By collaborating with multiple groups, the project seeks to accelerate the development of technologies that support communities with diverse speech...
2023-06-2654 minYOPN’s Living Well Starts HereUnshakable Journeys: Parkinson’s Pioneers Across America
The Young Onset Parkinson's Network (YOPN) Podcast, poudly presents Scott Rider.
Scott Rider and his long-time friend Jim Morgan, both diagnosed with Parkinson's disease 17 years ago, embarked on a remarkable journey across America. During their travels, they met numerous inspiring individuals with Parkinson's, as well as educators, movement disorder specialists, and others. Keep an eye out for an upcoming documentary that will capture their experiences and insights from this extraordinary adventure.
About Scott: Rider, a Columbus, Ohio native and former track and field star at The Ohio State University, holds the men's outdoor record in the 800 meters. After founding and man...
2023-06-2136 minYOPN’s Living Well Starts HereBrushes of Resilience: Unveiling the Power of Art in HealthcareThe YOPN Podcast proudly presents an interview with patient advocate Ted Meyer!
Ted Meyer, an artist, curator, and patient advocate, uses art to find inspiration in the adversity of the patient experience. In his 2016 TEDMED Talk, he shares how art can help healthcare providers gain a deeper understanding of their patients' pain, loneliness, and frustration. Through his powerful creations, Ted communicates patients' stories and invites empathy and compassion in the healthcare field.
Watch Ted Meyer's captivating TEDMED Talk here: https://www.youtube.com/watch?v=g_HOIg1qV9A&t=651s
2023-06-1352 minYOPN’s Living Well Starts HerePassion, Purpose, and Parkinson’s: Overcoming Challenges in the Creative WorldPassion, Purpose, and Parkinson's: Overcoming Challenges in the Creative World
Discover the inspiring short documentary "Passion, Purpose, and Parkinson's," crafted by the talented 23-year-old director, Olz McCoy. Created in honor of World Parkinson's Month, this remarkable film shares the incredible stories of three individuals—an accomplished painter, a skilled photographer, and a talented musician—who have triumphed over the physically and mentally debilitating effects of Parkinson's Disease. Despite the daunting obstacles life has thrown at them, they have persevered and continued to pursue their creative professions with unwavering determination.
Directed by Olz McCoy, whose talent shines through in every frame, this d...
2023-06-0143 minYOPN’s Living Well Starts HereClimbing the Heights: Ian O’Brien’s Parkinson’s Journey of TriumphThis week on the Young Onset Parkinson’s Network podcast (YOPN PODCAST)
Meet Ian O'Brien, a determined 43-year-old father who refuses to let Parkinson's Disease hinder his enjoyment of life. Ian is an unwavering advocate of pushing his limits and embracing challenges. His latest endeavor? Conquering the highest peaks in all 28 countries of the EU27 and the UK within a span of just 28 days. It's June 2023, and you can follow Ian's extraordinary journey at www.eurupian.com.
2023-05-3152 minYOPN’s Living Well Starts HereOvercoming Adversity: Antonia Kotsiros Journey of Healing, Hope and InspirationToday's YOPN podcast episode features Antonia Kotsiros, who has worked in the music industry and operated businesses in the coffee and holiday accommodation industries. Antonia's life took a dramatic turn when she was diagnosed with Parkinson's disease, leading to the end of her relationship, selling of her businesses, and a significant decline in her health. Antonia's focus on healing her body and discovering Dr. Joe Dispenza's healing work has resulted in health improvements. Her mission is to serve others on a similar path and become an inspirational speaker. In her free time, Antonia enjoys various activities such as songwriting, yoga...
2023-05-1559 minYOPN’s Living Well Starts HereRising to the Challenge: Al Latullippe’s Journey from Groupon to Rock Steady Boxing PioneerThe YOPN Podcast features Albert Latullippe, who shares his inspiring journey of how a chance encounter with Greg Geheb at his gym, with an expired groupon, led him to start the first Rock Steady Boxing Program in New England. Al went on to build the program from the ground up, expanding to multiple locations, and is now celebrating a 10-year milestone. Tune in to the YOPN Podcast to hear Al's story of overcoming obstacles and achieving success, and get ready to be inspired and uplifted
2023-05-0857 minYOPN’s Living Well Starts HereParkinson’s Advocate on a Mission: Jon Pawelkop’s Journey to Rock Steady Boxing”Jon Pawelkop, an Ambassador for the World Parkinson’s Congress 2023, was recently featured on the YOPN podcast. He promotes Rock Steady Boxing (RSB) and encourages others to "Make It Mean Something" (MIMS). In May 2018, Jon started a personal challenge called "Boxing Grand Tour Fighting Parkinson’s," which involved visiting an RSB affiliate class in every state and working out with the fighters there while also sharing words of encouragement. He completed this goal within 13 months and visited more than 60 RSB affiliates. Jon also attended the World Parkinson’s Congress in Kyoto, Japan, where he helped represent RSB and assisted coache...
2023-05-0256 minYOPN’s Living Well Starts HereEmpowering Parkinson’s Caregivers: Insights from a Trauma-Informed Healthcare ProfessionalThe YOPN Podcast (https://yopnetwork.org/) proudly presents Terri Pease Ph.D.
Dr. Pease released a book entitled Love, Dignity and Parkinson's: from Care Partner to Caregiver (https://www.amazon.com/Love-Dignity-Parkinsons-Partner-Caregiver/dp/B0BK311HKF)
If your spouse or loved one has been diagnosed with Parkinson's Disease, you may be feeling overwhelmed and unsure of how to best care for them without losing yourself. Seabury House Press's new book, Love, Dignity and Parkinson's: from Care Partner to Caregiver, offers a new approach to caregiving that can help ease the stress and anxiety that come...
2023-04-251h 04YOPN’s Living Well Starts HereShining a Light Through Parkinson’s: The Inspiring Story of Miguel Sanchez in the Entertainment IndustryWelcome to this week's episode of YOPN podcast! Today, we have the privilege of sharing the inspiring story of Miguel Sanchez, a skilled professional who worked as a lead on lighting sets for a plethora of movies and television shows, including popular hits like "Brothers and Sisters" and "Parks and Recreation." However, Miguel's life took an unexpected turn when he was diagnosed with Parkinson's disease. In this episode, we will delve into Miguel's journey as he battles Parkinson's, his experiences in the entertainment industry, and how he is persevering despite the challenges he faces. So sit back, relax, and...
2023-04-171h 09YOPN’s Living Well Starts HereDriving Parkinson’s Education: Meet the Content Creator Making a Difference!Get ready for an inspiring episode of the Young Onset Parkinson's Network podcast! Today, we're thrilled to introduce you to Mel Dizon, a content creator and Parkinson's disease advocate who's changing lives through education. From driving the Davis Phinney Foundation's mission to help people live well today, to organizing workshops and webinars, Mel is a force to be reckoned with. But she's not just about work - when she's not writing or editing, you can find her crushing it at CrossFit, sipping on scalding-hot decaf chai, and hanging out with her furry friends. So buckle up, and join us...
2023-04-1041 minYOPN’s Living Well Starts HereFrom Principal to Parkinson’s Advocate: A.C. Woolnough’s Inspiring JourneyThis weeks "Living Well Starts Here" podcast features A.C. Woolnough, a retired school principal diagnosed with Parkinson's Disease in 2015. A.C. has become an active writer, speaker, and advocate within the Parkinson's community, participating in research projects and presenting at conferences and support groups. He has authored two books titled "ON FIRE" and "STILL ON FIRE: Reflections on a Journey Through Life with Parkinson’s Disease" and made appearances on radio and television. The episode is an inspiring listen for those interested in Parkinson's Disease, advocacy, and personal journeys.
2023-03-2849 minYOPN’s Living Well Starts HereCracking the Code of Neurodegeneration: A Conversation with Dr. Jennifer JohnstonDr. Jennifer Johnston has spent 20 years studying neurodegenerative disease, including the discovery of aggresomes and their link to neurodegeneration. She is now the Co-Founder/CEO of NysnoBio, a biotech company focused on modulating the parkin enzyme pathway for unmet medical needs in neurology and oncology. Learn more about her groundbreaking work in neurodegeneration research! #neuroscience #research #innovation #biotech #NysnoBio
2023-03-2249 minYOPN’s Living Well Starts HereDisability Insurance Nightmare: One Man’s Struggle with the systemPlease note the information on this episode is in process of being fact checked.
Welcome to the YOPN podcast! In today's episode, we'll be discussing Tim Brandt's frustrating experience with long-term disability insurance. Many of us rely on insurance to protect us in the event of unforeseen circumstances, but what happens when the system fails us? Our guest today will be sharing his personal story of navigating the complexities of disability insurance and the challenges he faced along the way.
The Young Onset Parkinson’s Network (YOPN) invites you to join them on Tuesday, March 14th to...
2023-03-1321 minYOPN’s Living Well Starts HereShaking Up Awareness: High School Students Take On Parkinson’s DiseaseA group of high school students are spreading awareness about Parkinson's Disease for their HOSA project, which is a worldwide club for future health professionals. Their idea came from one of the group member's uncle who has suffered from the disease for the last 16 years. The students have been working on various activities to raise awareness, such as selling donuts and making bracelets, and will be presenting their project at the spring leadership conference on March 10th. The students have also created a website to further spread awareness and encourage others to share their stories and suggestions.
...
2023-03-0806 minYOPN’s Living Well Starts HereFrom Trauma to Triumph: Melissa’s Inspiring Story on YOPN PodcastHey everyone! 📢🎉 The YOPN Podcast is thrilled to introduce our next guest, Melissa Marie Livingston - you may know her as missmliv on Instagram and undeniablyhoneybee on TikTok!
At just 13, Melissa lost her mother and had to overcome so much as the "Red headed step child". Her incredible story includes beating a tough marriage, being diagnosed with YOPD, and even hitting one million views on her #parkinsonslookslikeme hashtag! 😲 We can't wait for you to hear her inspiring story!
We want to let you know that this episode includes some deep discussions about suicide and trauma, so please...
2023-03-0743 minYOPN’s Living Well Starts HereNoSilverBullett4PD: Michel Planquart and Mark Limebear become fast friends and start an international support group
Welcome to this week's episode of the "YOPN Podcast" where we explore the incredible power of human connection and the extraordinary things that can happen when people come together.
Today, we bring you the inspiring story of Michel Planquart and Mark Limbear. These two men met through a shared experience of living with Parkinson's disease, and their friendship sparked an idea that would change the lives of people all over the world.
Together, they founded the NoSilverBullett4PD support group, a community dedicated to helping those with Parkinson's disease navigate the challenges of their condition with support and understanding.
Join us...
2023-02-2748 minYOPN’s Living Well Starts HereNon runner Kamal Julka trains for 5 weeks and completes the NYC MarathonWelcome to this week's episode of "The YOPN: Living well starts here Podcast", where we share the inspiring stories of people who have overcome incredible challenges and achieved what was thought to be impossible. Today, we bring you the incredible story of Kamal Julka.
Kamal Julka was diagnosed with epilepsy over 10 years ago, and just when she thought that was enough to deal with, she was diagnosed with Parkinson's disease in 2021 after feeling a tremor in her hand. The progression of the disease came on quickly, causing her to stumble and fall after just 10 feet.
But Kamal refused to let he...
2023-02-2745 minYOPN’s Living Well Starts HereKoren Snow takes on Parkinson’s through exercise and attitudeHello and welcome to today's podcast! Today, we have the privilege of introducing you to an incredible individual who embodies resilience, determination, and inspiration. Despite facing the challenges of Parkinson's disease, she has continued to shine and uplift those around her with her infectious personality.
Koren Snow is that person who, no matter the situation, finds a way to come out of it stronger and more inspiring than ever before. Her unwavering spirit and positive attitude have touched the hearts of many and served as a beacon of hope for those who may be struggling with their own challenges.
Throughout he...
2023-02-2147 minYOPN’s Living Well Starts HereKat and Ken Hill sell everything to travel the country in an airstreamLadies and gentlemen, welcome to today's episode of our podcast. Today, we have the privilege of speaking with Kat Hill, a Davis Phinney Foundation YOPD Council Leader, who was diagnosed with Parkinson's disease in her mid-40s. Kat's journey with Parkinson's began three years ago when she stopped working due to her diagnosis. It took her a good two to three months to come to terms with the reality of the situation, but then she realized she had a choice. She could either lay around and minimize her symptoms or take control of her life. And self-pity wasn't really a...
2023-02-2147 minYOPN’s Living Well Starts HereMountain Climber trainer Molly Cupka (Donelan) discusses the benefits of indoor Mountain Climbing for Parkinson’sWelcome back to the YOPN podcast! Sponsored by the Young Onset Parkinson's Network (YOPNetwork.org), and radioparkies.com. This episode features Molly Cupka (Donelan), who's passionate about rock climbing and how it can help people living with Parkinson's disease. Molly's movement, Upend Parkinson's (https://www.upendparkinsons.com/), focuses on funding research, educating the climbing community, and promoting simple adaptations for everyday living that can slow the progression of Parkinson's. Don't miss this episode! You can also catch up on our past podcast episodes at https://yopn.podbean.com/. And remember to join the YOPN community at Yopnetwork.org. It's g...
2023-02-1341 minYOPN’s Living Well Starts HereThe story of Dianne Bramble ”Genes: The Story of an Accidental Superhero”Join the Young Onset Parkinson's Network (YOPNetwork.org) in celebrating Dianne Goebel Bramble's inspiring story! Dianne's small business, Mind and Body Wellness for You, offers coaching and personal training (mindandbodywellnessforyou.com) . She also sells her beautiful Parkinson's-inspired paintings on Facebook and has authored two books. Check out past podcast episodes on yopn.podbean.com and join the YOPN community for free at yopnetwork.org. #YOPN #ParkinsonsAwareness #InspiringJourney
2023-02-1339 minYOPN’s Living Well Starts HereTati Mayorga Wolfe discovers ayurvedic holistic medicineTati Mayorga Wolfe was diagnosed with Young Onset Parkinson's Disease (YOPD) at 31. Now 35 She has fought back from deep depression, and discovered ayurvedic holistic medicine
Ayurveda. While the word may be unknown to many, this holistic approach to medicine has been around for over 5,000 years.
Ayurveda is the “traditional, ancient Indian system of health science” and known to be one of the oldest medical systems in the world.
Through ayurvedic holistic medicine, yoga, meditation and a few other bits of information, Tati has found peace, acceptance, and a better way of life and...
2023-02-0759 minYOPN’s Living Well Starts HereTati Mayorga Wolfe discovers ayurvedic holistic medicineTati Mayorga Wolfe was diagnosed with Young Onset Parkinson's Disease (YOPD) at 31. Now 35 She has fought back from deep depression, and discovered ayurvedic holistic medicine
Ayurveda. While the word may be unknown to many, this holistic approach to medicine has been around for over 5,000 years.
Ayurveda is the “traditional, ancient Indian system of health science” and known to be one of the oldest medical systems in the world.
Through ayurvedic holistic medicine, yoga, meditation and a few other bits of information, Tati has found peace, acceptance, and a better way of life and...
2023-02-0759 minYOPN’s Living Well Starts HereMiriam Bram talks about the WPC and shares her storyIn 2008, Miriam was diagnosed with Young Onset Parkinson’s Disease (YOPD) at the age of 44. She is a Parkinson’s advocate and Ambassador for the 6th World Parkinson Congress (WPC) which will take place in Barcelona July 4-7 2023.
As an advocate, she has raised awareness of Parkinson’s disease and fundraises to help speed research for a cure.
Check out her blog at https://www.shakingupparkinsons.com/
“Living well with Parkinson’s requires a commitment to staying positive and noticing what you can do rather than what you can no longer do. It is pos...
2023-02-0754 minYOPN’s Living Well Starts HereCall on the Fighter 2"Calling all music lovers! Tune in to the young onset Parkinson's podcast interview episode of 'Call on the Fighter' Part 2 where we sit down with the one and only Richard Gootee. He'll be sharing his incredible story, the inspiration behind his Grammy-winning song "Just Reach Out" for the 80s Christian Rock band Petra. Plus, we'll be getting the inside scoop on "Call on the Fighter" and his new release, The Caregiver (I Need A Love)". And who knows, we might even hear an endorsement from Peter Frampton. And don't forget to welcome our new co-hosts Nathan Lee Ward and...
2023-01-2442 minYOPN’s Living Well Starts HereJoni and Sequoia Lowe talk about their song ”Sim Shaky”When a mom with young onset Parkinson's and her son team up, amazing things happen! Checkout the heartwarming story of Joni and Sequoia Lowe and their hit song "Slim Shaky"
2023-01-1341 minYOPN’s Living Well Starts HereESPN Founder Bill Rasmussen and his new book ”One Giant Leap for Fankind”"Exciting news for sports fans! "One Giant Leap for Fankind," the new book by ESPN founder Bill Rasmussen, has just won the grand prize at the New England book festival. In the book, Bill shares his secrets to staying positive and offers valuable tips for maintaining a positive outlook. Don't miss this opportunity to hear from the man who revolutionized sports broadcasting and get your hands on a copy of this award-winning book. Follow Bill Rasmussen for more inspiring content“
to purchase the book go to https://www.espnfounder.com/books
Special thanks to APDA Re...
2022-12-2339 minYOPN’s Living Well Starts HereMichelle Newman C.O.O of the Kirk Gibson Foundation for Parkinson’sMichelle Newman, the Chief Operating Officer of the Kirk Gibson Foundation for Parkinson's, discusses her decision to leave corporate America and join the foundation. She shares her personal connection to Parkinson's disease through her father's experience with the condition, and discusses how he managed his disease. Additionally, she explains the mission and purpose of the Kirk Gibson Foundation for Parkinson's, which is dedicated to supporting individuals with Parkinson's and advancing research on the condition.
2022-12-2039 minYOPN’s Living Well Starts HereSEGMENT THREE: DEVELOPING A WELLNESS PLAN TO MANAGE YOUR DIAGNOSISThanks to Ellen Bookman for taking the lead on this series
Special thanks to StanandTeresa Jackson for coming on the show (Part 3) and sourcing great guests for this series.
Teresa Jackson is a National Board-Certified Health & Wellness Coach (NBC-HWC), Duke Integrative Medicine Coaching Program, and a Certified Coach— International Coaching Federation who will:
Discuss how to take what you have learned about mental wellness, develop a plan, and apply it to your everyday life in concert with the medical management aspect of the disease.
Karen Goble, Director at Southern Regional Area Health Education, an orda...
2022-12-071h 03YOPN’s Living Well Starts HereDr. Peter Schmidt talks about Parkinson’s and CovidDr. Schmidt is active in research, specializing in the intersection between mathematics and medicine, with a special interest in mapping the n-dimensional spaces of clinical data. Schmidt serves as an advisor to several government, industry, and foundation initiatives. He has been involved in several national-scale quality initiatives including with the US National Quality Forum and the Fresco Network in Italy. Schmidt has recent or current advisory engagements in wearable sensors, telemedicine, remote monitoring, and clinical trial design. He has contributed to AHRQ and Commonwealth Fund publications and has been an invited speaker for NIH and diverse international patient and...
2022-11-2949 minYOPN’s Living Well Starts HerePMD Alliance and the ALL IN summitIn this Episode we spoke with Andrea Merriam, CEO and Anissa Mitchell, LCSW, Chief Program Officer of the PMD Alliance about the ALL IN summit
The ALL IN summit was held October 22-25 in Washington DC
This national in-person summit gathered community + support group leaders and allies from around the country, convening prospective leaders, newbies, and veterans to connect, collaborate, and embrace the magic that happens when we come together to learn.
About the PMD alliance
PMD Alliance is a 501c3 nonprofit organization dedicated to educating, empowering, and connecting...
2022-11-2259 minYOPN’s Living Well Starts HerePART 2: Mental Health: Navigating through Life with Ellen Bookman and Dr. Charles DentWelcome to Segment 2 of our mental health series
Segment 1 included
MENTAL HEALTH SYMPTOMS ASSOCIATED WITH A YOPD DIAGNOSIS which can be found here
https://twomikespdpodcast.podbean.com/e/maintaining-emotional-health-is-as-important-as-the-medical-management-of-any-chronic-disease-diagnosis/
In segment 2 we discuss a PRIMER ON WAYS TO STAY MENTALLY HEALTHY AS YOU NAVIGATE THOSE THINGS IN LIFE THAT where we:
Discuss how we process and understand feelings and emotions as we deal with situations unique to those diagnosed with YOPD
Offer insight into managing and expressing feelings
Dive into how we connect with others
2022-11-0752 minYOPN’s Living Well Starts HereCall on the FighterCall on the Fighter" began as a simple idea...create and offer original music to encourage and inspire "fighters" along their Parkinson's journey. Colleen Bridges, owner, and director of Bridges for Parkinson's found the perfect fit in one of her own fighters, Rich Gootee. Rich, an award-winning singer/songwriter, knows all too well the constant and daily struggles as he was diagnosed with Parkinson's disease in 2018. Colleen's experience, research, and regular boxing classes have helped Rich and many others discover the fight within themselves to overcome the otherwise debilitating effects of Parkinson's disease. Together, Colleen, Rich, and their team...
2022-10-3142 minYOPN’s Living Well Starts HereThe woman who can smell Parkinson’sThe woman who can smell Parkinson’s
Joy Milne’s husband Les was diagnosed with Parkinson’s at the age of 45. However, it had been 12 years earlier when Joy had first noticed that something was different about him.
Joy has a rare condition called hereditary hypersomnia that gives her a heightened sense of smell. When Les was 33, she noticed that he had started to develop an odor, which she described as a subtle, musky smell.
She also noticed the same distinct smell when attending meetings organized by the charity Parkinson’s UK. It...
2022-10-251h 00YOPN’s Living Well Starts HereVestibular Training for Parkinson’s with Sheila ThelenSheila Thelen, owner of Vestibular Training Services LLC (VTS), is a National/International/Master Figure Skating Coach & Worldwide presenters at International Conferences & Events. (She is a Vestibular GENIUS - working with thousands of athletes & kids & rehabilitation groups throughout the world.)
https://vestibulartrainingservices.com/web/index.php?siteid=420&pageid=3356
She's here to talk about the benefits that Vestibular training has for people with Parkinson's
2022-10-1037 minYOPN’s Living Well Starts HereEli Pollard and the WPC in 2023 plus Alison Miller of Supernus PharmaceuticalsToday's guests include Eli Pollard and Alison Miller
Elizabeth “Eli” Pollard is the Executive Director of the World Parkinson Coalition (https://www.worldpdcoalition.org/) talks about many subjects including the WPC in 2023 being held in Spain. She also discusses the "Parkinson's Tulip Project" what it's about and how to enter. Travel grants and much more!
Alison Miller, Strategic Partnership Manager with Supernus Pharmaceutical (https://www.supernus.com/commercial-products), talks about building relationships within the Parkinson's Community and the drugs offered by Surpernus to help "on time" as well as the "Parkinson's Tulip Project"
2022-09-2744 minYOPN’s Living Well Starts HereMaintaining emotional health is as important as the medical management of any chronic disease diagnosis
Thanks to Ellen Bookman for taking the lead on this series
Special thanks to StanandTeresa Jackson for coming on the show (Part 2) and sourcing great guests for this series.
Maintaining emotional health is as important as the medical
management of any chronic disease diagnosis
Monday at 8AM EST on radioparkies.com, we begin a 3-part Mental Wellness series created to educate those diagnosed with YOPD on the importance of maintaining mental wellness
Many diagnosed with YOPD may experience a flood of emotions, particularly when the diagnosis comes in the prime of life - as it does with YOPD.
The 3-part Me...
2022-09-1345 minYOPN’s Living Well Starts HereJohn Cullen will not let Parkinson’s define himThis week on radioparkies.com sponsored by the Young Onset Parkinson's Network (YOPNetwork.org) we chat with John Cullen about his documentary.
The documentary, “It’s Just Parkinson’s” is an inspiring and emotional look at one man’s journey to live life to the fullest, while living with a disease that has no cure.
John Cullen is a 62-year-old man battling Parkinson’s disease with grit, courage, grace, and a warrior mindset.
A lifelong athlete, Parkinson’s has slowly taken Cullen out of many athletic pursuits. Yet after being introduced to powerlifting, and incorporating it into his workouts, the improvement to...
2022-09-061h 00YOPN’s Living Well Starts HereMark Milow helps others with their Parkinson’s diagnosis through social mediaMark Milow interacts on social media platforms as #markinthepark21 and shares really informative and fun content while bringing awareness to Parkinson’s Disease.
Diagnosed with Parkinson's himself in 2020 during the Covid boom
Mark immediately searched for a way to add meaning to his diagnosis and found that meaning through patient advocacy!
When he received his diagnosis, there were so many questions Mark wanted answered and he felt overwhelmed. Mark then made the determination that he would help others through that difficult experience and would do whatever he could to provide assistance to Parkinson’s patients and the family or caregivers that...
2022-08-2947 minYOPN’s Living Well Starts HereDarbe Schlosser explains how to break through bradykinesia
Darbe Schlosser is the coach, consultant, & creator of the Motorvation System. Motorvation (https://www.motorvationfoundation.org/) provides scholarships for People with Parkinson's to receive fall prevention consulting and coaching. They have administered over 900 hours of training through the Parkinson's Foundation community grant. They are in the process of developing a rehabilitative training taxonomy to improve the deliverance of rehabilitative training to the Parkinson's demographic.
In addition to developing the best strategies to overcome movement abnormalities within a highly variable disease, Darbe also focuses on improving the deliverance of these methods with consideration of movement history, movement goals, and individual constraints...
2022-08-0539 minYOPN’s Living Well Starts HereKeri Shaw tells her story about how sobriety helped her manage Parkinson’sAbout Keri:
Dedicated single mama to 2 amazing girls. Keri has had a long career in pharmaceuticals and geeks out reading anything she can that has to do with research and science.
Keri is an avid athlete, starting early as a competitive gymnast and later fell in love with all things running. After being diagnosed with young onset Parkinson’s, Keri knew from her prior experience with recovery and sobriety that in order for her to continue to show up for life that she would need to find her people and build a village. The positive approach she takes on living wi...
2022-07-3038 minYOPN’s Living Well Starts HereSEASON 1 - EPISODE 14 Kevin Kwok tells his story including working with Big Pharma
The Young Onset Parkinson's Network Podcast (YOPnetwork.org) is proud to present a conversation with Kevin Kwok!
Kevin tells his story and discusses being an ambassador of Davis Phinney, his talks with DP and gives his insight of the pharma/biotech industry where he spent years building a great career.
About Kevin
"9 years ago, at the age of 48, I was diagnosed with Young Onset Parkinson’s Disease. After recovering from the shock of this diagnosis, I opted to embrace my disease. Having been trained as a clinician (PharmD- U of Michigan 1986) and a 30 year executive in the biopharma industry, I ap...
2022-07-2253 minYOPN’s Living Well Starts HereSEASON 1: EPISODE 15 Jan Grimes and Parkinson’s hacksFor this weeks show sponsored by the Young Onset Parkinson's Network (Yopnetwork.org) on Radio Parkies Webradio at radioparkies.com, listen to the story about inventor Jan Grimes. Jan talks about living with PD and a few Parkinson’s hacks.
Check out this Davis Phinney video for more Parky hacks
https://davisphinneyfoundation.org/tips-tricks-and-products-to-manage-parkinsons-symptoms/
2022-07-0849 minYOPN’s Living Well Starts HereIntroducing PD Advocate and popular YouTuber Jeremy McDonald
The Young Onset Parkinson’s Network (YOPN) and radioparkies.com are proud to present the story of a rising personality in the Parkinson’s community, Jeremy McDonald.
Jeremy a talented musician initially started a YouTube channel to showcase his music then he was diagnosed with PD.
So Jeremy decided to change the focus to spreading awareness and help others with this condition using his wit, and sense of humor all the while being serious when needed.
Check out his videos by searching JEREMY MCDONALD ON YOUTUBE
2022-06-251h 02YOPN’s Living Well Starts HereSEASON 1: EPISODE 13: Advice from a young onset Parkinson’s advocate and his care partner with Vivek and Chai PuriAre you aware there’s an excellent podcast that deals specifically with Care Partner support for women who have a partner with young onset Parkinson’s?
It’s called Married2PD (https://www.married2pd.com/)
Check out the above link to learn more
Vivek and Chai talk about raising children, communication, agonists, social media and much more
About Vivek and Chai
Married for 15 years.
Living in Northern Virginia with three kids Chai grew up near Boston and is a trained doctor and a licensed massage therapist. She wor...
2022-06-1047 min
2 Mikes Parkinson’s PodcastEPISODE 1: YOPN Founder Anna Grill along with YOPN board members Mark Kohus and Jeremy Likness
RePost from LIVE show, Thursday February 24, 2022 6:00 on radioparkies.com for our first podcast as YOPN "living well starts here" podcast.
Tonight we speak with Young Onset Parkinson's Network (YOPN) founder Anna Brown Grill about the latest and greatest updates concerning the YOPN.
Also, we speak with board members and fellow Parkinson's fighters Jeremy Likeness and Mark Kohus, they tell their PD story and address why they joined the YOPN board.
About today's guests:
Anna Grill is the Founder of Young Onset Parkinson’s Network (YOPN). She was on the fast track as a sales executive at a Fortune 200 company, and the y...
2022-03-0151 min