Parkinson’s Looks Like Me Podcast

Could Parkinson's be the result of an evolutionary adaptation that provides short-term protection from environmental triggers, but results in long-term consequences? Researcher Matthew Farrer, PhD introduced a compelling model for understanding the mechanism behind Parkinson's in his recent paper, and we're diving into all the details with him. ~~~ HOSTS ~~~ Melissa Livingston | @missmliv Esther Labib-Kiyarash | @shakinginmyboots1 Chris Sutphin | @cesutphin with support from hosting organization, Parkinson & Movement Disorder Alliance ~~~ GUEST ~~~ Matthew Farrer, PhD Professor of Neurology (Molecular Neuroscience and Neurogenetics) at the University of Florida | Find his full bio here . READ HIS PAPER | A unified evolutionary explanation of Parkinson's disease ~~~ LEARN MORE ~~~ PD & LRRK2 GENE | Video explanation from Parkinson's UK ALPHA-SYNUCLEIN | Article from Cure Parkinson's JOIN YOPN | PMD Alliance's Free Membership Program for People with YOPD & Care Partners Members can join the monthly community gathering held live on Zoom every 4th Tuesday/month, and you'll likely see our co-hosts there! GET IN-PERSON SUPPORT | PMD Alliance's Directory for Groups, Providers, & Events Don't forget to follow, subscribe, and share! Because the conversation continues in the comments on Podbean , across social media, and in YOPN's Monthly Community Gatherings. Tell us what you think! Disclaimer: The views and opinions expressed in this program are those of the authors/producers/guest speakers and do not necessarily reflect the views or opinions of YOPN or PMD Alliance.

Sit down with co-hosts Mel and Chris to learn what their Deep Brain Stimulation (DBS) procedures were like, the realities of recovering from brain surgery, and how they feel now, 2 years after. This episode does not shy away from the visceral parts of their experiences, including Chris' unique impressions from being awake during his DBS placement. ~~~ HOSTS ~~~ Melissa Livingston | @missmliv Esther Labib-Kiyarash | @shakinginmyboots1 Chris Sutphin | @cesutphin with support from hosting organization, Parkinson & Movement Disorder Alliance ~~~ LEARN MORE ~~~ READ EARLY ONSET PARKINSON'S DBS STORIES “It’s Worth It”: Tiffany’s Deep Brain Stimulation Journey | PMD Alliance Blog Insights from DBS | PMD Alliance Blog "It Was Life-Changing" - Roger's DBS Story | PMD Alliance Blog RECOMMENDED DBS RESOURCES Monthly DBS Corner Zoom Meeting for Q&A with Peers & Specialists | Parkinson's Orange County Group Deep Brain Stimulation and Parkinson’s From Decision-Making to Daily Life with DBS | Comprehensive Guide from the Michael J. Fox Foundation JOIN YOPN | PMD Alliance's Free Membership Program for People with YOPD & Care Partners Members can join the monthly community gathering held live on Zoom every 4th Tuesday/month, and you'll likely see our co-hosts there! GET IN-PERSON SUPPORT | PMD Alliance's Directory for Groups, Providers, & Events Don't forget to follow, subscribe, and share! Because the conversation continues in the comments on Podbean , across social media, and in YOPN's Monthly Community Gatherings. Tell us what you think! Disclaimer: The views and opinions expressed in this program are those of the authors/producers/guest speakers and do not necessarily reflect the views or opinions of YOPN or PMD Alliance.

Jump in the time machine with cohosts Mel, Esther, and Chris to revisit a past conversation from 2024 when Chris and Mel were both preparing for Deep Brain Stimulation (DBS) surgery. Learn about their mindsets and quality-of-life going into the procedure, then next month, come back to hear their DBS impressions almost 2 years later! ~~~ HOSTS ~~~ Melissa Livingston | @missmliv Esther Labib-Kiyarash | @shakinginmyboots1 Chris Sutphin | @cesutphin with support from hosting organization, Parkinson & Movement Disorder Alliance ~~~ LEARN MORE ~~~ READ EARLY ONSET PARKINSON'S DBS STORIES “It’s Worth It”: Tiffany’s Deep Brain Stimulation Journey | PMD Alliance Blog Insights from DBS | PMD Alliance Blog "It Was Life-Changing" - Roger's DBS Story | PMD Alliance Blog RECOMMENDED DBS RESOURCES Monthly DBS Corner Zoom Meeting for Q&A with Peers & Specialists | Parkinson's Orange County Group Deep Brain Stimulation and Parkinson’s From Decision-Making to Daily Life with DBS | Comprehensive Guide from the Michael J. Fox Foundation JOIN YOPN | PMD Alliance's Free Membership Program for People with YOPD & Care Partners Members can join the monthly community gathering held live on Zoom every 4th Tuesday/month, and you'll likely see our co-hosts there! GET IN-PERSON SUPPORT | PMD Alliance's Directory for Groups, Providers, & Events Don't forget to follow, subscribe, and share! Because the conversation continues in the comments on Podbean , across social media, and in YOPN's Monthly Community Gatherings. Tell us what you think! Disclaimer: The views and opinions expressed in this program are those of the authors/producers/guest speakers and do not necessarily reflect the views or opinions of YOPN or PMD Alliance.

Tune in for a frank discussion on the financial and bureaucratic hurdles you may have to overcome while living with Young Onset Parkinson's. Co-hosts Esther, Mel, and Chris open up about the juggling they've done, the hard choices they've had to make, and the guilt that they manage. ~~~ HOSTS ~~~ Melissa Livingston | @missmliv Esther Labib-Kiyarash | @shakinginmyboots1 Chris Sutphin | @cesutphin with support from hosting organization, Parkinson & Movement Disorder Alliance ~~~ LEARN MORE ~~~ FIND FINANCIAL ASSISTANCE | PMD Alliance's Quick-start Guide to Assistance Programs PMD Alliance's Free Membership Program for People with YOPD & Care Partners Members can join the monthly community gathering held live on Zoom every 4th Tuesday/month, and you'll likely see our co-hosts there! MORE ON PD COST | What Does Parkinson's Actually Cost You? by Beatrice Zatorska, Founder and CEO of PD Buddy App GET IN-PERSON SUPPORT | PMD Alliance's Directory for Groups, Providers, & Events Don't forget to follow, subscribe, and share! Because the conversation continues in the comments on Podbean , across social media, and in YOPN's Monthly Community Gatherings. Tell us what you think!

In this special mini-episode, Mel and Chris talk Parkinson's travel and the importance of gathering with community members in anticipation of the upcoming World Parkinson's Congress in Phoenix, AZ. ~~~ HOSTS ~~~ Melissa Livingston | @missmliv Chris Sutphin | @cesutphin with support from hosting organization, Parkinson & Movement Disorder Alliance ~~~ LEARN MORE ~~~ JOIN YOPN | PMD Alliance's Free Membership Program for People with YOPD GET IN-PERSON SUPPORT | PMD Alliance's Directory for Groups, Providers, & Events Don't forget to follow, subscribe, and share! Because the conversation continues in the comments on Podbean , across social media, and in YOPN's Monthly Community Gatherings. Tell us what you think!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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