YOPN’s Living Well Starts Here: Recent Episodes
YOPN
Join us as we chat with members of the YOPD community Disease, care partners and experts in the YOPD field to learn more about this neurodegenerative disease and those living with it.
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.
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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.
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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.
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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.
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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 APDANW@APDAParkinson.org. 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.
The YOPN Podcast is proud to present award winning photographer Safi Alia Shabikan.
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 aging and highlights the author's profound insights into illness and their capacity for love. The father actively participated in the project until his last day, making it a moving testament to the human spirit's resilience in the face of adversity.
About the author: Safi Alia Shabaik, a Los Angeles native, discovered her passion for visual storytelling at a young age, earning a B.A. with honors in Fine Art from UCLA. She later became an essential part of Grace Jones's life, working as a fashion stylist, documentarian, and personal assistant. Safi's work has graced the pages of publications like The New York Times and Black+White Photography, earning her recognition in Photo Lucida's Critical Mass Top 50. She also received the inaugural Las Fotos Project Foto Award for Self-Expression and a Visual Arts grant from the National Endowment of the Arts (NEA) in collaboration with the Parkinson's Foundation. As a founding member of the Los Angeles Street Collective, Safi Alia Shabaik continues to make a lasting impact in the world of visual arts.
The 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 the play, I was blown away by the wonderful production that brings out the feelings and thoughts from a patient and care partner perspective. Join us for an interview with the very talented Matthew Moore and get inspired by his journey. Every performance will be followed by a talkback during which you’re invited to ask questions and express your opinions about the play with the actors, the audience, medical professionals, and Parkinson’s patients. Check out the link below to access the interview and learn more about Parkinson's Disease. #parkinsons #PDawareness #ParkinsonsDisease #ShakeItOff #ParkinsonsWarrior #FindACure #ParkinsonsCommunity #LivingWithParkinsons #ParkinsonsResearch #MovementDisorder #YOPN #YOPD #youngonsetparkinsons #Parkinsonslookslikeme
Get 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 Topperwein and Steven Eury
parkinsons #PDawareness #ParkinsonsDisease #ShakeItOff #ParkinsonsWarrior #FindACure #ParkinsonsCommunity #LivingWithParkinsons #ParkinsonsResearch #MovementDisorder #YOPN #YOPD #youngonsetparkinsons #Parkinsonslookslikeme
Get 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
parkinsons #PDawareness #ParkinsonsDisease #ShakeItOff #ParkinsonsWarrior #FindACure #ParkinsonsCommunity #LivingWithParkinsons #ParkinsonsResearch #MovementDisorder #YOPN #YOPD #youngonsetparkinsons #Parkinsonslookslikeme
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 light on their significance and benefits. Drawing from his extensive experiences in the Amazon rainforest, he shares captivating stories and adventures.
Tune in to this episode as we explore these fascinating subjects and much more with the legendary Dr. Merlin Tuttle, a true authority on bats and their ecological importance.
To learn more about Dr. Tuttle go to https://www.merlintuttle.org/
The 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. The company, co-founded by Lucy Jung, values input from individuals with Parkinson's throughout the development process. Their goal is to provide innovative medical devices and software that enhance the well-being of those living with Parkinson's.
The 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 patterns
Now recruiting! https://speechaccessibilityproject.beckman.illinois.edu/
The Speech Accessibility Project is now recruiting for participants with Parkinson's and related neurological conditions like MSA, PSP, and post-DBS. U.S. residents over the age of 18 are eligible.
Mark Hasagawa-Johnson is a researcher at the Beckman Institute for Advanced Science and Technology and a professor of electrical and computer engineering at the University of Illinois Urbana-Champaign. He has devoted his 30-plus-year career to developing communication tools and technologies and ensuring their accessibility for everyone. His research focuses on automatic speech recognition, and he is the lead researcher of the Speech Accessibility Project, a multi-year initiative that aims to improve voice-recognition technology by collecting audio samples from volunteers with a variety of speech-impacted disabilities. Hasagawa-Johnson earned his Ph.D. from the Massachusetts Institute of Technology and was recently named a Fellow of the International Speech Communication Association.
Clarion Mendes is a speech-language pathologist and a clinical assistant professor in the Department of Speech and Hearing Science at the University of Illinois Urbana-Champaign. She received her M.A. in speech-language pathology from UIUC and brings 14 years of SLP experience to the Speech Accessibility Project team. Mendes’s rich clinical and teaching portfolio includes health equity, treatment protocols for gender-diverse individuals seeking voice modification, and quality of life improvements for individuals with acquired communication disorders and differences. She is a member of the American Speech-Language-Hearing Association and the World Professional Association for Transgender Health and is OutCare Health certified.
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 managing Rider+Reinke Financial Group LLC, he sold his position in 2017. Diagnosed with Parkinson's disease at 47, Scott fights it with exercise and a positive attitude, biking over 10,000 miles in the last four years. Now retired at 62, he inspires others with Parkinson's through speaking engagements, fundraising for research, and sharing his experiences via a blog and YouTube channel. Scott's unwavering faith and motto "IWNQ = I WILL NEVER QUIT" guide him in his daily battle against the disease.
The 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
Passion, 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 documentary takes you on a captivating journey into the lives of these remarkable individuals. Each one of them possesses an unyielding passion for their craft and an unshakeable sense of purpose that has enabled them to overcome the challenges posed by Parkinson's Disease. The film features Alex Echo, a gifted painter whose vibrant artworks transcend the limitations imposed by Parkinson's. Through his sheer determination and unwavering love for art, Alex continues to create stunning pieces that resonate with audiences worldwide. Joining him is David Plummer, a skilled photographer whose lens captures the beauty of the world, showcasing that Parkinson's can never diminish his keen eye for detail and artistic vision. Lastly, we meet Nigel Bates, a talented musician who defies the physical constraints of Parkinson's Disease to create soul-stirring melodies that touch the hearts of all who listen. With Olz McCoy at the helm, this documentary provides a powerful testament to the indomitable human spirit and the ability to find purpose and fulfillment in the face of adversity. Through intimate interviews, poignant visuals, and a compelling narrative, "Passion, Purpose, and Parkinson's" showcases the triumph of creativity and the unwavering determination of these remarkable individuals. To learn more about Olz McCoy and his remarkable directorial talent, visit his website at https://olzmccoy.com/director. You can also explore the incredible works of Alex Echo at https://www.alexecho.com/, David Plummer at https://davidplummer.co.uk/, and Nigel Bates at https://www.nigelbates.net/. Immerse yourself in the world of resilience, creativity, and the pursuit of passion as you embark on this unforgettable cinematic journey with "Passion, Purpose, and Parkinson's." #parkinsons #PDawareness #ParkinsonsDisease #ShakeItOff #ParkinsonsWarrior #FindACure #ParkinsonsCommunity #LivingWithParkinsons #ParkinsonsResearch #MovementDisorder #YOPN #YOPD #YoungOnset
This 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.
Today'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, and travelling. The podcast will explore Antonia's journey of resilience, hope, and finding joy amid adversity
The 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
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 coaches from various countries as they demonstrated their lessons to attendees.
The 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 with this diagnosis.
Welcome 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 join us as we listen to Miguel's story.
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 as we chat with Mel about her passion for Parkinson's advocacy and her drive to make a difference!
Parkinsons#PDawareness#Parkinsonsdisease#ShakeItOff#ParkinsonsTreatment#BeatPD#ParkinsonsResearch#PDArmy#ParkinsonsAwarenessMonth #NeverGiveUp
This 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.
Dr. 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
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 learn from disability expert T.J. Geist. Get the inside scoop on Social Security Disability and gain valuable insights on how to navigate the system. To sign up for the event, visit yopnetwork.org and click on events.
A 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.
Website: https://learn-fundraise-and-tell-your-parkinsons-disease-story.square.site/about-us
Special thanks to Sadie Robitaille, Brady Benedict-Smith, Sydney Pagnozzi and Ava Pilderian
Hey 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 take care while listening. Remember, if you or anyone you know needs help, reach out to the Crisis Text Line by texting HOME to 741741, the National Suicide Prevention Lifeline at 1-800-273-8255, the Trans Lifeline at 1-877-565-8860, or the TrevorLifeline at 1-866-488-7386 (for LGBTQ youth). Let's support one another! ❤️ #YOPNPodcast #MelissaMarieLivingston #MissMLiv #UndeniablyHoneybee #ParkinsonsLooksLikeMe #InspiringStory #MentalHealthAwareness
Welcome to this week's episode of "Remarkable Connections," 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 today as we dive into the incredible story of Michel and Mark and learn how their friendship and dedication to helping others has made a profound impact on the lives of countless people. It's a story of hope, resilience, and the remarkable power of human connection.
Welcome 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 her illness define her. Instead, she turned to running and set her sights on the ultimate challenge - the NYC Marathon. With unwavering determination and an unbreakable spirit, Kamal trained hard and pushed herself to the limit to achieve what seemed impossible. Join us as we delve into the inspiring journey of Kamal Julka and learn how she overcame seemingly insurmountable odds to become a true inspiration to us all.
Hello 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 her journey, Koren has shown that nothing can dim her light or dampen her spirit. She has become an advocate for those living with Parkinson's and a source of encouragement for anyone who may be facing adversity in their lives. So sit back, relax, and prepare to be inspired as we delve into the life and experiences of the amazing Koren Snow.
Ladies 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 good fit for her. To help them navigate this "new normal," Kat and her husband Ken started a Young Onset Parkinson's social group and are actively building a support network of Young Onset Parkinson's care partners. Ken, who is joining us today, is here to share his experiences as a care partner and how they are resizing their current lifestyle and future expectations. So, sit back, relax, and join us as we explore the challenges and triumphs of living with Parkinson's disease Looking to join the Young Onset Parkinson's Network? go to https://yopnetwork.org/ to sign up for free!
Welcome 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 going to be an inspiring episode of #UpendParkinsons
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
Tati 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 refuses to give into PD.
Check out her TikTok at https://www.tiktok.com/@tati.wolfe
This is not intended for a cure, please consult with your Doctor for all health related issues
To listen to past podcast episodes go to https://yopn.podbean.com/
Interested in joining the YOPN community? Go to https://yopnetwork.org/
Tati 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 refuses to give into PD.
Check out her TikTok at https://www.tiktok.com/@tati.wolfe
This is not intended for a cure, please consult with your Doctor for all health related issues
To listen to past podcast episodes go to https://yopn.podbean.com/
Interested in joining the YOPN community? Go to https://yopnetwork.org/
In 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 possible to have Parkinson’s and live a happy and fulfilling life.”
- Miriam Bram, Parkinson’s Advocate and Ambassador, World Parkinson Congress
To listen to past episodes go to https://yopn.podbean.com/
Interested in joining the YOPN community? Go to https://yopnetwork.org/
"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 Ned Neuhaus! #CallontheFighter #RichardGootee #JustReachOut #Petra #YoungOnsetParkinsons #TheCaregiverINeedALove #PeterFrampton #NathanLeeWard #NedNeuhaus #Music #Radioparkies #YOPN #Podcast #inspiration
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"
"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 Regional Director Bill Patjane
Michelle 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.
Thanks to Ellen Bookman for taking the lead on this seriesSpecial 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 ordained chaplain, and a certified Integrative Health Coach and Cognitively Based Compassion Training teacher through the Emory University Center for Contemplative Science and Compassion-Based Ethics will:
Discuss the benefits of utilizing calming techniques such as meditation and breathing as a tool to maintaining Mental Wellness.
Mental Health Series
Segment 2
https://yopn.podbean.com/e/mental-health-part-2-with-ellen-bookman-and-dr-charles-dent/
Segment 1
https://yopn.podbean.com/e/maintaining-emotional-health-is-as-important-as-the-medical-management-of-any-chronic-disease-diagnosis/
Dr. 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 professional conferences. Schmidt previously worked in corporate finance-focused on healthcare innovation, created chronic disease management systems, and served as Chief Operating Officer of a joint venture of Oxford, Stanford, and Yale delivering online education. Educated at Harvard and Cornell, he had a fellowship
In 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 people with movement disorders, their families, and the healthcare providers and community members who care for them.
Welcome 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
Describe how we function or “put the pieces together” to make life decisions such as family, marriage, work, retirement, etc.
Our guest is Dr. Charles Dent:
Dr. Charles Dent, M.Div, PHD., is a licensed Mental Health First Aid Trainer, Coach and Therapist. Dr. Dent, a Veteran of the US Marine Corps
Special thanks to Ellen Bookman and Theresa Jackson
Call 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 have grown the music idea into an effort to help even more fighters find restoration and hope by raising funds so that nobody will ever have to be turned away from their local program. Please check out more information about our project and consider purchasing our song at www.callonthefighter.com.
Thank you for watching! https://www.youtube.com/watch?v=rq6onvFOC9Y
Song Written and performed by Greg Anderson and Rich Gootee
The 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 was at this point that she was able to link the smell to the disease.
Joy’s ‘super smeller’ abilities would soon go on to make headlines around the world, and along with researchers, they're changing the landscape of diagnosing Parkinson's.
Sheila 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
Today'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"
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 Mental Wellness, Sponsored by the Young Onset Parkinson's Network (YOPNetwork.org), will: Identify non-motor symptoms such as depression, anxiety, lack of sleep, apathy, etc. Discuss how non-motor symptoms can affect everyday life such as how to deal with family, work, retirement, telling people, etc. Offer tips on how to develop a mental wellness health plan Examine how mediation can be a component in maintaining mental wellness.
SEGMENT ONE: MENTAL HEALTH SYMPTOMS ASSOCIATED WITH A YOPD DIAGNOSIS Bo Majors, Licensed Social Worker, employed by Texas Children’s Pediatrics in Austin, Texas, who will Identify mental health symptoms associated with a YOPD diagnosis. Discuss the consequences of physicians focusing only on the diagnosis, clinical assessment, evaluation, and medical management of our symptoms
This 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 his mobility has been staggering. In a dramatic finish, Cullen competes in his first ever powerlifting contest. IJP is about life, death, brotherhood and the profound impact of mindset in the face of adversity. You can see the documetary here: https://vimeo.com/706326801 Password: Password: Lemond19898xii
Mark 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 are impacted. Mark can be found on Instagram, TikTok and YouTube as @MarkInThePark21 . His Instagram is https://www.instagram.com/markinthepark21 He also has a Facebook Group for Parkinson’s Awareness that can be found at MarkInThePark21 in the “Groups” section of FB. Here's a list of all Mark's social media platforms linktr.ee/markinthepark21
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 that impact learning and performance outcomes. She believes there exists an interrelatedness between motor output and sounds. Understanding these relationships can better provide you with tools on how to break through mental and motor blocks and successfully deconstruct and reconstruct complex movement patterns.
About 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 with YOPD allows Keri to keep pushing forward despite living with Parkinson's
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 approach my disease with a unique involvement and curiosity at multiple levels. To quote Michael J Fox, “when you’ve seen a Parkinson’s patient, you’ve only seen one patient.” The issue is that no two PD patients are exactly alike, and this poses a dilemma in treating our tribe according to traditional clinical paradigms. This is where personalized medicine (PM) comes in. In the course of my presentation, I will share how my involvement in PM as a patient will both help me and others with this disease."
For 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/
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
Are 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 works in Vivek's home building business. She also started and runs Married2PD, an organization focused on providing a place of support for wives of people with YOPD. There is a website, Facebook group, podcast, and a monthly gathering via zoom. She really enjoys gardening and reshuffling furniture and furnishings inside the home over and over again.
Vivek grew up in Northern Virginia. For the last 16 years he has worked with his father in the family homebuilding business, which sounds like a euphemism for a mafia money laundering operation. Now that his wife also works in the company, he shudders at the thought of giving her a performance evaluation. He was diagnosed with Parkinson's disease 10 years ago, the day after his third child was born.
New show’s sponsored by the Young Onset Parkinson's Network every Thursday evening at 6:00 EST on radioparkies.com.’
Have you ever had dyskinesia in a public setting?
Then had security walk up to you?
Were you alone?
Thursday's guest is Jennifer Sullivan and she went through this at a casino in California.
Tune in Thursday (5/26/22) to radioparkies.com at 6:00 EST and listen to Jennifer’s story and how she turned a negative situation into a positive outcome called the “Wiggles Project” and spread awareness about dyskinesia and Parkinson's https://www.thewigglesproject.com/
Five Facebook friends all with Parkinson’s, walk into a bar. Whoops! This really happened! They actually have never met each other in person and decide to travel to Oaxaca Mexico to help the Oaxaca Parkinson’s community. Here’s a few hints of what they discover/re-discover.
Friendship
Family
Community Guest hosts: Michael Quaglia, Mike Achin, Heather Kennedy Guests: Gavin Mogan, Nathan Lee Ward, Laura Olmos, Eric Slominski, Russ Parker
Tune in Thursday's at 6:00 EST on radioparkies.com to hear LIVE shows
keep·y-up·py
noun INFORMAL•BRITISH
a game whose aim is to keep a soccer ball in the air for as long as possible by bouncing it off any part of the body except the hands and arm.
Thursday (5/12/22) evening on radioparkies.com at 6:00 EST the Young Onset Parkinson's Network (https://yopnetwork.org/) is proud to present the incredible Joe Gregory!
Gavin Mogan and I speak with Joe who was diagnosed with Parkinson's in 2019 did "Keepy Uppy's" for 61 miles in addition to completing over 13,000 consecutive right in his back yard.
Joe was a great interview who will keep you inspired, don’t miss this one!
Check out this video to see a keepy uppy!
https://www.youtube.com/watch?v=Q7TzBKLL_XY
Thursday night at 6 EST on radioparkies.com we spoke with new ninja warrior Bryan Hill, Bryan tells his incredible story beginning with his mother being diagnosed with PD at 23 to becoming a Ninja warrior.
Thursday night 5/5/22 at 6:00 on radioparkies.com we spoke Christopher Sutphin otherwise known as cosmosperfect on TikTok. Chris talks about mental Health and Parkinson’s and https://www.parkie.tv/
Tonight at 6:00 EST on radioparkies.com we have two very special people to the Parkinson’s community, Karl and Angela Robb! They share their amazing journey from meeting in an America on-line chatroom through how they stay strong dealing with PD for over 30 years. This is a fun, inspiring interview, check it out, you’ll enjoy.
About Karl Karl Robb has had Young Onset Parkinson’s disease (PD) for over thirty years. With symptoms since he was seventeen years old, Karl was diagnosed at the age of twenty-three. Now fifty-five, he is a Parkinson’s disease advocate, entrepreneur, inventor, Reiki Master, and author of two books (A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease and Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit) with his wife and carepartner, Angela Robb. He has blogged for thirteen years on his website, ASoftVoice.com. He is a Community Team Member to ParkinsonsDisease.net. Karl is a board member of both the Parkinson Voice Project and Parkinson Social Network.
About Angela Angela Robb is Karl’s wife of 25 years, co-editor at ASoftVoice.com, Community Team Member at ParkinsonsDisease.net, and a Reiki Master. Angela has advocated for caregiver issues by sharing her experiences at various regional and national Parkinson’s conferences, writing for the Every Victory Counts manual from the Davis Phinney Foundation, and presenting at the World Parkinson Congress. In 2015, Angela was honored at The White House as a Champion of Change in Parkinson’s Disease.
PODCAST version of Thursday 4/8/22 EST aired LIVE each Thursday on radioparkies.com we talked with Arlene Faulk.
Arlene Faulk is a teacher, writer, storyteller and accomplished business woman. After a years-long struggle to understand and conceal debilitating symptoms as she ascended the corporate ladder, a life-changing zigzag led her to find comfort and healing through Chinese medicine and Tai Chi. She discovered her calling with Tai Chi and has been teaching for more than 20 years.
An award-winning blogger who had a passion for writing from a young age, now Arlene has captured her dramatic personal story in a memoir, Walking on Pins and Needles: A Memoir of Chronic Resilience in the Face of Multiple Sclerosis. Her inspiring story demonstrates how a chronic and debilitating health condition lacks the power to control our lives and stop us from moving in the direction of possibility.
YOU CAN PURCHASE THE BOOK AT https://arlenefaulk.com/book/
PANEL INCLUDES
Ellen Bookman https://laughingmywaythroughparkinsons.home.blog/.../ell.../
Heather Kennedy
https://www.kathleenkiddo.com/blog/
Teresa Jackson
https://podcasts.apple.com/.../parkinsons.../id1541914877
Thursday night 3.25.22 on the YOPN PODCAST we have guests hosts:
Jonathan Braddock author of YOPD Club 1 and 2 Teresa Jackson host of Podcast “Parkinson’s Pathway Pals” Heather Kennedy podcast host, writer blogger Mike Achin, athlete, and fundraiser (over 300K for MJFF and APDA) and my co-host for over 5 years Check it out as we take turns asking blogger and exercise advocate Eric Slominski (PARKYPERSPECTIVE.COM) questions about how he deals with Parkinson’s symptoms and situations. Also, we have YOPN founder Anna Grill giving updates on the membership drive and the latest happenings with the Young Onset Parkinson’s network.
Tonight at 6 on Radioparkies.com the Young Onset Parkinson’s Network Podcast (https://yopn.podbean.com/) is proud to present 2-time Stanley cup champion and all-around great guy Shawn Thornton. In this episode Shawn breaks down as he talks about his grandmothers battle with Parkinson’s, his book “Fighting my way to the top”, his foundation (https://www.thorntonfoundation.org/ ) which raises money for Parkinson’s and Pediatric cancer and why he’s worked with the APDA of Massachusetts for 10 years plus much more. Please see attached tribute to Shawn when he played in Boston for 7 years accompanied by the Drop Kick Murphy’s. Happy St. Patrick’s Day!
https://www.youtube.com/watch?v=APMuw8drN8c
Special thanks to Bill Patjane Executive Director of the APDA Northeast for setting everything up.
Re-Post from Thursday 3/10/22 on radioparkies.com at 6:00 EST the Young Onset Parkinson’s Network Podcast proudly to spoke with PD advocate extraordinaire Teresa Jackson!
Diagnosed in February 2019 Teresa quickly became a tremendous advocate for PD starting with a Mrs. Virginia beauty Pageant where she placed top 10 at 57 years young with Parkinson’s.
Next, she authored her book called “Thriving with Parkinson’s – finding Joy after diagnosis” a personal memoir since being diagnosed
She didn’t stop there adding a hit Podcast “Parkinson’s Pathway Pals - Tuesdays with Teresa to her resume
Today in addition to managing her Podcast, this amazing person is preparing for a bike ride across Virginia (300+ Miles) raising awareness and funds for Parkinson’s research
To top it all off she manages to exercise 14-16 hours a week!
Catch the LIVE show Thursday's 6:00 on radioparkies.com
PODCAST: https://www.buzzsprout.com/1386772 FUNDRAISER: https://www.facebook.com/donate/1664174550641619/
RE-POST from Thursday 3/3/22 show on radioparkies.com at 6:00 pm est Heather Kennedy, new co host Ellen Bookman and I, Interview author Michael Murray about his new book “My Pain-Body Solution” A Journey to the Other Side of Suffering which can be purchased on the website mypainbodysolution.com
About the book MICHAEL J. MURRAY’S powerful memoir chronicles his difficult battle to conquer his undiagnosed pain. Murray confides his emotional torment and near collapse as numerous doctors promise relief but only deliver ineffective treatments, contradicting diagnoses, and often dispassionate care. In the end, Murray’s chance discovery in a book on back pain leads to a dawning awareness of the emotional root of his near-constant agony. As he digs deeper into this line of medicine and therapy—and his past—he uncovers the deep connection between mind and body, the healing power of outdoor pursuits and connecting with nature, and the inspiring, innovative methods that can cure physical and emotional pain.
But first up we have Gavin Mogan, Russ Parker, Laura Olmos, Eric Slominski and Nathan Lee Ward talk about why they’re going to Oaxaca, Mexico this April starting on the 19th. They’re looking to learn about their PD culture and see where they can help
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 youngest and only woman on the executive team when she was diagnosed with Young Onset Parkinson’s Disease (YOPD) in 2007 at the age of 38.
Jeremy Likness has been a professional technology and software developer for over three decades. Currently, Jeremy is the Senior Program Manager for .NET Data at Microsoft where his personal mission is to empower developers to be their best. Prior to his current position, Jeremy helped kickstart the technology and software development efforts for several startups that ultimately grew into multi-million and multi-billion-dollar corporations.
YOPN board member, Mark C. Kohus, is a Senior Vice President and Group Manager with Fidelity Investments. With more than 24 years of experience working in the financial services field, Mark has held a variety of leadership roles including project management, relationship management and supporting operations.