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

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

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.