Parkinson’s Looks Like Me Podcast

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.

1. #Parkinsons

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

Welcome to the YOPN Podcast.  Our guest today is Esther Labib-Kiyarash, a Certified Professional of Healthcare Quality with extensive experience in both hospital and ambulatory quality management. Esther's specialties encompass regulatory compliance, all facets of Quality Improvement, Lean methodology, and Continuous Survey Readiness. Additionally, she brings her expertise in Patient Safety and Patient Advocacy to the table. It's important to note that Esther also faces the unique challenge of living with Parkinson's disease.

Remarkably, Esther chose to retire in September 2023, at the age of 48, to devote her time and energy to patient advocacy. In this first part of our two-part series, we will delve into Esther's personal journey. Be sure to stay tuned for Part 2, where Esther will share insights on patient advocacy and the importance of coming together to advocate for the rights of individuals living with Young-Onset Parkinson's Disease (YOPD).

Get ready for an insightful and inspiring conversation. Enjoy the show!

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

Today's episode holds a deeply personal significance for me. You see, I grapple with cognitive issues that make it challenging for me to articulate my thoughts clearly and concisely. It's essential to note that these issues aren't indicative of dementia or any similar condition. In fact, my thoughts remain as lucid as ever.

However, after battling this disease for 17 years, I've encountered various hurdles when it comes to expressing myself effectively. This is where Robert Cochrane enters the picture, and he's been a game-changer for me and many others. Robert, with his impressive PhD background, is on a mission to teach individuals like me how to convey our thoughts and experiences through writing.

Now, if you're part of the Parkinson's disease (PD) community, you've likely heard of Robert Cochrane, and for good reason. His expertise and dedication to helping people like me find our voice are truly remarkable.

So, I invite you to tune in to this episode and take a journey with me. Let's explore how Robert's teachings have transformed my ability to express myself and connect with others in the PD community. I believe you'll find it not only insightful but also inspiring.

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 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.'

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