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Parkinson’s Looks Like Me Podcast

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Rating
★★★★★
5
from
4 reviews
This podcast has
100 episodes
Language
English
Publisher
YOPN
Explicit
No
Date created
2022/02/26
Latest episode
2026/10/16
Average duration
40 min.
Release period
35 days

Description

Real, in-depth conversations about living with Young Onset Parkinson's Disease (YOPD). Join cohosts Esther, Mel, and Chris as they talk with care partners, healthcare experts, and treatment developers to better understand this neurodegenerative disease and those living with it.  Brought to you by the Young Onset Parkinson's Network of PMD Alliance

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Check latest episodes from Parkinson’s Looks Like Me Podcast podcast


Advanced Therapies & Tough Choices
2026/10/16
Join co-hosts Esther, Chris, and Mel as they discuss available advanced therapies, what they've tried, what their doctors have said, and how they chose to move forward with their care. ~~~ HOSTS ~~~ Melissa Livingston | @missmliv Esther Labib-Kiyarash | @shakinginmyboots1 Chris Sutphin | @cesutphin with support from hosting organization, Parkinson & Movement Disorder Alliance   ~~~ LEARN MORE ~~~ TREATMENTS OVERVIEW | PMD Alliance Treatments Hub DEEP BRAIN STIMULATION (DBS): Michael J. Fox Foundation's Comprehensive DBS Guide American Parkinson's Disease Association's DBS Blog Ask the MD (Rachel Dolhun) on Adaptive DBS “It’s Worth It”: Tiffany’s Deep Brain Stimulation Journey “It Was Life-Changing” – Roger’s DBS Story Insights from DBS: Benjamin's Story FOCUSED ULTRASOUND (FUS): Michael J. Fox Foundation's Focused Ultrasound page Focused Ultrasound Foundation Parkinson's Foundation page on Focused Ultrasound & Other Lesion Therapies INFUSION THERAPY: Cleveland Clinic Infusion Therapy Page FDA Approves First Subcutaneous Apomorphine Device for Parkinson’s Disease 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.
New Connections on the Cause of Parkinson's with Matthew Farrer, PhD
2026/09/18
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.
After Deep Brain Stimulation (DBS): Was It Worth It?
2026/08/21
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.
Before Deep Brain Stimulation (DBS): Preparation & Mindset
2026/07/17
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.
Coping with the Financial Cost to Your Family
2026/06/19
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!
Hope We See You at the 2026 World Parkinson's Congress!
2026/05/22
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!
The Truth About Finding a Cure with Alberto Espay, MD
2026/04/24
"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!
"Random OFF Is My Failure": Hot Takes with Rodolfo Savica, MD, PhD
2026/03/27
"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/
Sex, Intimacy, and Parkinson’s
2026/02/06
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.
Alternative Therapies for Parkinson's disease
2025/12/12
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 on "A New Path to Prevention and Treatment"
2025/12/11
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.
Parkinson’s Clinical Trials, Wearables, and Advocacy: A Conversation with Simon Allard (Audio Only)
2025/09/23
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.
Parkinson’s Clinical Trials, Wearables, and Advocacy: A Conversation with Simon Allard
2025/09/23
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.
Travel and Adventure with Young Onset Parkinson's: Journey Tips and Tales (Audio Only)
2025/06/13
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.
Travel and Adventure with Young Onset Parkinson's: Journey Tips and Tales
2025/06/13
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.

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