In this episode of the Parkinson's Podcast Unfiltered, the group is joined by a special guest to respond to a listener's question about how their relationship with Parkinson's has changed over time. Together, they talk through the different ways they have named and understood Parkinson's since diagnosis, including ideas of fighting, endurance, acceptance, and daily negotiation.

The conversation moves between personal stories, practical coping strategies, and reflections on how identity, energy, and priorities shift as symptoms progress. Rather than settling on one way of framing Parkinson's, the episode explores how those frames evolve. Sign up for updates on webinars, events, and resources for the Parkinson's community: https://dpf.org/newsletter-signup

Learn more about the Davis Phinney Foundation for Parkinsons's: https://dpf.org

In this episode of the Parkinson's Podcast, Chris Krueger talks with a clinical research team from University of Toronto about how the clinical trial process works, how participants can have the best experience in a trial, and why a team approach to trials is necessary and good.

In this episode, you'll hear from Dr. Alfonso Fasano, Dr. Arturo Abundes Corona, Sara Naghdlou, a clinical research coordinator with a background in biomedical engineering; and Yu-Yan Poon, a registered nurse who supports trials at the University of Toronto. This episode is sponsored by BlueRock Therapeutics.

Sign up for updates on webinars, events, and resources for the Parkinson's community: https://dpf.org/newsletter-signup

Learn more about the Davis Phinney Foundation for Parkinsons's: https://dpf.org

Occupational therapist and aging-in-place expert Carol Chiang joins us to discuss her new book, Age in Place or Find a New Space. Carol explains why meaningful interactions—not just safety—belong at the center of planning for life with Parkinson's, and how "the choices you make today become the consequences you live with tomorrow."

In this podcast episode, Carol discusses the importance of early-stage steps like decluttering and fall-prevention basics, practical visual cueing for freezing, how to break home updates into manageable pieces, and honest caregiver conversations. Carol also shares how to think about modifying a home versus considering a move, and why planning early protects both independence and connection. A grounded, hopeful conversation about creating a home that supports who you are and how you want to live.

Learn more about Carol and her work, and find her book at: https://www.EvolvingHomes.com

Explore the OT-curated home-modification resource she mentioned: Ask Samie: https://www.asksamie.com/

Sign up for updates on webinars, events, and resources for the Parkinson's community: https://dpf.org/newsletter-signup

Learn more about the Davis Phinney Foundation for Parkinsons's: https://dpf.org

GUEST BIO

Carol Chiang is an Occupational Therapist and founder of Evolving Homes®, specializing in aging-in-place, age tech, and smart home solutions. With 25 years of experience, she helps individuals and families decide whether to "Age in Place" or "Find a New Space®," and supports them through the home changes required at each stage of Parkinson's.

A Certified Parkinson's Wellness Recovery therapist and former Olympic-caliber athlete, Carol teaches the importance of planning ahead, using exercise as medicine, and building habits that protect long-term independence. She consults with organizations, startups, and universities worldwide, and has contributed to AARP, the Davis Phinney Foundation, the National Kitchen & Bath Association, and international aging conferences.

In this episode of the Parkinson's Podcast Unfiltered, hosts Heather Kennedy and Kat Hill, along with Chris Krueger, honor their late friend Wayne Gilbert and explore the challenging distinction between fatigue and apathy. They offer practical advice for managing energy levels, including the counterintuitive insight that more movement can actually reduce tiredness, and share tips for grandparents navigating visits with multiple grandchildren. The conversation also tackles personal grooming struggles, with candid solutions like wash-and-go haircuts, dry shampoo, and simplified self-care routines that make daily life more manageable.

Sign up for updates on webinars, events, and resources for the Parkinson's community: https://dpf.org/newsletter-signup

In this episode of the Parkinson's Podcast, learn about gene therapy for Parkinson's, including common misunderstandings and ongoing research about it.

This episode contains some technical terms and abbreviations. For your convenience, here is a short list of definitions that might be helpful.

AADC – Aromatic L-Amino Acid Decarboxylase: An enzyme that helps make dopamine (not a rock and roll band)

AAV – Adeno-Associated Virus: A harmless virus used to deliver gene therapy

CDNF – Cerebral Dopamine Neurotrophic Factor: A protein that helps keep dopamine-producing cells healthy

DBS – Deep Brain Stimulation: A surgical treatment that uses electrical signals to help control symptoms

GAD – Glutamic Acid Decarboxylase: An enzyme that helps rebalance brain circuits.

GBA – A gene linked to Parkinson's risk

GCH1 – GTP Cyclohydrolase 1: An enzyme that supports dopamine production.

GDNF – Glial Cell Line-Derived Neurotrophic Factor: A protein that helps protect brain cells

LRRK2 – A gene linked to Parkinson's risk

PARK2 – A gene linked to Parkinson's risk

PET – Positron Emission Tomography: A brain scan that shows chemical activity

PINK1 – A gene linked to Parkinson's risk

SNCA – A gene linked to Parkinson's risk

More information about Gene Therapy for Parkinson's is available here:

https://davisphinneyfoundation.org/blog/gene-therapy-parkinsons/

https://youtu.be/n2KNtRK3SIk

https://youtu.be/v9mJiO4EEag

Sign up for updates on webinars, events, and resources for the Parkinson's community: https://dpf.org/newsletter-signup

In this episode of The Parkinson's Podcast, Foundation Program Manager Beau Boughamer talks with neurologist Vanessa Hinson and Helen Power, a person living with Parkinson's, about the sport that's sweeping the country—and transforming life with Parkinson's.

Dr. Hinson, a movement disorder specialist at the Medical University of South Carolina, shares how pickleball supports balance, coordination, confidence, and connection through her eight-week program for people with Parkinson's. Helen describes how the game brought her movement, joy, and community, proving that staying active can also mean having fun. Sign up for updates on webinars, events, and resources for the Parkinson's community—delivered to your inbox. https://dpf.org/newsletter-signup

In this episode, we talk with Dr. Aaron Haug about what the terms ON and OFF mean in the context of Parkinson's, what ON-OFF fluctuations are, and how to work with your doctor to help manage them. Dr. Haug is a movement disorder specialist based in Englewood, Colorado.

Sign up for updates on webinars, events, and resources for the Parkinson's community—delivered to your inbox. https://dpf.org/newsletter-signup

Watch Aaron Haug's video about Tremors and Dyskinesias here: https://youtube.com/shorts/jcjNOnaA0as?feature=share

This episode is sponsored by BlueRock Therapeutics. Learn more here: https://www.bluerocktx.com

Aaron Haug, MD, is a neurologist and movement disorder specialist in Colorado. He earned his bachelor's degree at Creighton University and his medical degree at the University of Kansas. He completed a neurology residency and a fellowship in movement disorders at the University of Colorado, including a year as chief resident.

Sign up for updates on webinars, events, and resources for the Parkinson's community—delivered to your inbox. https://dpf.org/newsletter-signup

In the final episode of this three-part series, Connie Carpenter Phinney and Dr. Mark Mapstone explore the emotional and cognitive changes that can occur as Parkinson's progresses. They talk openly about issues like apathy, anxiety, executive function decline, and how these changes can affect relationships, communication, safety, and daily life—including decisions around driving and independence. While the conversation acknowledges grief, frustration, and loss, it also offers insight, practical advice, and strategies for living well through change. This episode is for anyone facing or seeking to understand the emotional and cognitive realities of Parkinson's—people diagnosed, care partners, and clinicians alike.

Connie Carpenter Phinney is a co-founder of the Davis Phinney Foundation and has been her husband's care partner for over 25 years. Her background in science combined with her lived experience and curiosity helped shape this conversation with neuropsychologist Dr. Mark Mapstone. Connie is the host of the Foundation's Care Partner Meetup, a monthly virtual meetup for Parkinson's care partners held the first Tuesday of each month. To attend the meetup, sign up here: https://davisphinneyfoundation.org/events/parkinsons-care-partner-meetup/

Dr. Mark Mapstone is Professor of Neurology at the University of California, Irvine School of Medicine. He is a member of the UCI Institute for Memory Impairments and Neurological Disorders and a Fellow of the UCI Center for Neurobiology of Learning and Memory. His research focuses on pre-clinical detection of neurological disease using cognitive tests and biomarkers obtained from blood. He has a special interest in developing strategies to maintain successful cognitive aging. In the clinic, he specializes in cognitive assessment of older adults with suspected brain disease. Dr. Mapstone earned a PhD in Clinical Psychology at Northwestern University and completed fellowship training in Neuropsychology and Experimental Therapeutics at the University of Rochester. He received a Career Development Award from the National Institute on Aging and his research has been funded by the National Institutes of Health, the Michael J. Fox Foundation, and the Department of Defense.

This content is possible thanks to the generosity of our listeners. Every day more people are diagnosed with Parkinson's, and this means our work is more important than ever. Please support our work by visiting https://dpf.org/donate.

Interested in our Living with Parkinson's Meetup, Care Partner Meetup, or Live Well Today Webinars? Learn how to join. https://dpf.org/webinars

Sign up for updates on webinars, events, and resources for the Parkinson's community—delivered to your inbox. https://dpf.org/newsletter-signup

In this episode, Connie and Dr. Mapstone dive into the role of neuropsychology in Parkinson's care. They explain what a neuropsychological evaluation is, what to expect during an office or virtual visit, and how results can help guide treatment, daily planning, and care strategies. This episode also discusses why someone might be referred, how testing works, and what insights it can offer for both individuals and families.

**This content is possible thanks to the generosity of our listeners. Every day more people are diagnosed with Parkinson's, and this means our work is more important than ever. Please support our work by visiting https://dpf.org/donate.** Connie Carpenter Phinney

Connie Carpenter Phinney is a co-founder of the Davis Phinney Foundation and has been her husband's care partner for over 25 years. Her background in science combined with her lived experience and curiosity helped shape this conversation with neuropsychologist Dr. Mark Mapstone. Connie is the host of the Foundation's Care Partner Meetup, a monthly virtual meetup for Parkinson's care partners held the first Tuesday of each month. To attend the meetup, sign up here: https://davisphinneyfoundation.org/events/parkinsons-care-partner-meetup/

Dr. Mark Mapstone

Mark Mapstone is Professor of Neurology at the University of California, Irvine School of Medicine. He is a member of the UCI Institute for Memory Impairments and Neurological Disorders and a Fellow of the UCI Center for Neurobiology of Learning and Memory. His research focuses on pre-clinical detection of neurological disease using cognitive tests and biomarkers obtained from blood. He has a special interest in developing strategies to maintain successful cognitive aging. In the clinic, he specializes in cognitive assessment of older adults with suspected brain disease. Dr. Mapstone earned a PhD in Clinical Psychology at Northwestern University and completed fellowship training in Neuropsychology and Experimental Therapeutics at the University of Rochester. He received a Career Development Award from the National Institute on Aging and his research has been funded by the National Institutes of Health, the Michael J. Fox Foundation, and the Department of Defense.

Interested in our Living with Parkinson's Meetup, Care Partner Meetup, or Live Well Today Webinars? Learn how to join. https://dpf.org/webinars

Sign up for updates on webinars, events, and resources for the Parkinson's community—delivered to your inbox. https://dpf.org/newsletter-signup

In the first episode of our three-part series about neuropsychology and Parkinson's, Connie Carpenter Phinney and Dr. Mark Mapstone explore how brain chemistry, especially dopamine, relates to thinking, movement, and mood in Parkinson's. They break down key terms like cognition and executive function and offer insights into how Parkinson's affects brain systems beyond motor symptoms.

This episode lays the groundwork for understanding how the brain works—and what happens when it changes.

**This content is possible thanks to the generosity of our listeners. Every day more people are diagnosed with Parkinson's, and this means our work is more important than ever. Please support our work by visiting https://dpf.org/donate.**

Interested in our Living with Parkinson's Meetup, Care Partner Meetup, or Live Well Today Webinars? Learn how to join. https://dpf.org/webinars

Visit https://dpf.org to learn more about the Davis Phinney Foundation for Parkinson's.

Speaker Bios: Connie Carpenter Phinney Connie Carpenter Phinney is a co-founder of the Davis Phinney Foundation and has been her husband's care partner for over 25 years. Her background in science combined with her lived experience and curiosity helped shape this conversation with neuropsychologist Dr. Mark Mapstone. Connie is the host of the Foundation's Care Partner Meetup, a monthly virtual meetup for Parkinson's care partners held the first Tuesday of each month. To attend the meetup, sign up here: https://davisphinneyfoundation.org/events/parkinsons-care-partner-meetup/

Dr. Mark Mapstone

Mark Mapstone is Professor of Neurology at the University of California, Irvine School of Medicine. He is a member of the UCI Institute for Memory Impairments and Neurological Disorders and a Fellow of the UCI Center for Neurobiology of Learning and Memory. His research focuses on pre-clinical detection of neurological disease using cognitive tests and biomarkers obtained from blood. He has a special interest in developing strategies to maintain successful cognitive aging. In the clinic, he specializes in cognitive assessment of older adults with suspected brain disease. Dr. Mapstone earned a PhD in Clinical Psychology at Northwestern University and completed fellowship training in Neuropsychology and Experimental Therapeutics at the University of Rochester. He received a Career Development Award from the National Institute on Aging and his research has been funded by the National Institutes of Health, the Michael J. Fox Foundation, and the Department of Defense.