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Living with Parkinson's Meetup Panel April 2024
Meetups

Living with Parkinson’s Meetup

Virtual

Join us the Third Thursday of Every Month to learn everything you’ve ever wanted to know about Parkinson’s but were afraid to ask.

The Third Thursday of Every Month

1 – 2 pm Mountain Daylight Time
(12 pm PDT, 2 pm CDT, 3 pm EDT)

Parkinson’s is like a modern car. One little glitch in the hardware and all hell breaks loose. During our monthly Living with Parkinson’s Meetups, we talk about all the things that break loose, go wrong, make you laugh, make you cry, go right, go weird, and everything in between. It’s the hour of truth you never knew you needed. Join our panel each month to learn everything you’ve ever wanted to know about Parkinson’s but were afraid to ask.

Click the button above and fill out the brief form to register. You’ll receive a confirmation email with details for accessing the meetup.

Access Past Meetups

May 2026: “I’m not waving; I have Parkinson’s”: Finding Humor in Parkinson’s

This Living with Parkinson’s meetup focuses on finding humor and laughter while living with Parkinson’s disease.

The conversation featured a variety of personal stories, ranging from embarrassing public blunders to the amusing side effects of medications. Panelist Larry shares his “top 10 perks of Parkinson’s,” joking about never needing an electric toothbrush and turning milk into milkshakes. Lloyd recalls a humorous incident in Pamplona where bystanders assumed his Parkinson’s tremors were just lingering adrenaline from running with the bulls, while Amy recounts an energetic, “Superwoman” water-skiing experience following a misadministered rescue inhaler dose. Other participants discuss airport security mistaking dietary supplements for contraband, mixing up spouses’ clothing due to cognitive fog, and navigating everyday boundary issues with loved ones.

The meetup concludes with the panelists sharing media recommendations that bring them joy, spanning classic British comedies like Monty Python and Fawlty Towers to contemporary shows like Shrinking and Afterlife. They also discuss making spontaneous connections to Parkinson’s through music. The group highlights that sharing laughter creates a vital sense of community and provides a necessary psychological break from worrying about the future.

April 2026: Depression, Parkinson’s, and What We Didn’t See Coming

In the April Living with Parkinson’s Meetup, participants came together for an open, honest conversation about depression and Parkinson’s, a topic many experience but don’t always recognize or name. Panelists shared how depression can show up in unexpected ways—through apathy, irritability, isolation, changes in sleep and appetite, and shifts in selftalk—often overlapping with Parkinson’s symptoms themselves. 

The discussion explored stigma, grief, and shame, including how depression may appear long before diagnosis and how it can intensify during periods of loss or life transition. Panelists emphasized the importance of professional evaluation, individualized treatment, and ongoing communication with care teams, while also highlighting the role of connection, routine, movement, gratitude practices, and mutual accountability. 

Above all, this meetup underscored the power of community: being seen, believed, and supported by others who understand. The conversation reminded attendees that depression is common, treatable, and not a personal failure—and that asking for help is an act of strength. 

March 2026: Why Me? When to Tell People? …and Other Parkinson’s Questions That Don’t Have Easy Answers

This month’s Living With Parkinson’s Meetup focused on some of the questions people often face after receiving a Parkinson’s diagnosis—questions like, why me? When do I tell others? How fast will this progress? When should I start medication?

The panelists shared personal stories of navigating fear, denial, anger, and grief, as well as the relief and connection that come from speaking openly. They emphasized how individual circumstances—family, work, age, and coping styles—shape each person’s approach, and how no single “correct” path exists.

This month’s meetup featured a guest panelist, Devon Cone. You can learn more about Devon at https://www.continueclimbing.com/

February 2026: Work, Kids, Stress, and Adaptation: Life With Young Onset Parkinson’s

February 2026

This month’s Living with Parkinson’s Meetup focused on how work, stress, and family responsibilities shape daily life with Parkinson’s–especially for those diagnosed young. Panelists describe how commuting, demanding jobs, and parenting teens can intensify symptoms, and how stepping back from work or reducing stress sometimes brings dramatic relief. They also discuss the long, often delayed diagnostic journey many women face, along with the uncertainty of changing labels, medication shifts, and living with non-progressive Parkinsonism.

Family dynamics play a major role: participants share how they talk to their children about the condition, the mix of humor and worry that comes with raising teens, and the challenges of invisible symptoms in relationships with partners. The group also reflects on balancing responsibilities with self‑care, navigating apathy and burnout, and the importance of friendships, hobbies, and community. The conversation closes with a shared message of grace—toward themselves, their families, and each other—as they continually adapt to life with Parkinson’s.

We were happy to welcome Esther Labib-Kiyarash as a guest panelist this month! Learn more about Esther.

January 2026: Resilience Looks Different for Everyone Living With Parkinson’s

January 2026

In the first Living with Parkinson’s Meetup of 2026, the panel explores how resilience evolves over time and how flexible, realistic goals help people live well with Parkinson’s. Claudia shares how an unexpected tremor led to her diagnosis and how exercise became both her anchor and her community, eventually leading her to coach Parkinson’s‑focused fitness classes. Kat reflects on how friendships—like the one she and Claudia share—help her stay motivated and grounded more than a decade into her diagnosis. Other panelists describe adapting activities, practicing self‑compassion, and celebrating small wins as essential elements of resilience. The group closes by emphasizing that resilience is a daily practice shaped by community, creativity, and doing what’s possible on any given day.

November 2025: DBS Recovery, Botox for Cervical Dystonia, Incontinence PT, and More

November 2025

In this Living with Parkinson’s Meetup, the panelists have a candid year-in-review discussion. Kat shares how Botox treatments finally brought her cervical dystonia under control after three rounds. Stephanie discusses her experience managing urinary incontinence through pelvic floor physical therapy and medication, sharing practical solutions for a symptom many experience but that is rarely discussed openly. Stan talks about his DBS surgery experience just two weeks post-op, including being awake during the procedure and what to expect during the recovery period. The panel also covers caregiver burnout, accessing specialized care in rural areas, and advocacy efforts for Parkinson’s registries.

September 2025: Sensory Changes, Urinary Urgency, Vertigo, and More

September 2025

This Living with Parkinson’s Meetup featured panelists’ personal insights on sensory changes, including loss of smell, altered taste preferences, hearing sensitivity in noisy environments, touch and proprioception challenges, and vision difficulties. The conversation extended to bladder urgency, dexterity loss affecting work, and practical coping strategies.

August 2025: Impulsiveness and the Effects of Dopamine Agonists

August 2025

This Living with Parkinson’s meetup featured our panelists’ perspectives on impulse control issues that many people with Parkinson’s experience but find difficult to talk about. This conversation includes discussion of dopamine agonists and impulse control disorders.

July 2025: Stacked Symptoms, Demoralization, and More

July 2025

This Living with Parkinson’s meetup looked at the compounding effects of stacked Parkinson’s symptoms—from freezing of gait and urgency to cognitive overload and apathy. Our panelists shared honest stories of how these combinations affect daily life, relationships, and emotional well-being.

June 2025: Why We Exercise And Why It’s Hard

June 2025

This Living with Parkinson’s Meetup was all about exercise. From fluctuating symptoms to motivation and accessibility, there are real challenges that can get in the way, but movement matters, and finding your way to keep going is possible. Our panel shared the different ways they stay active and strategies for overcoming physical and emotional hurdles.

Communicating with Your Parkinson’s Care Team (May 2025)

May 2025

This Living with Parkinson’s Meetup focused on navigating relationships with care providers. Listen in as the panelists as they talk about what’s worked—and what hasn’t—when it comes to communicating with their care team, advocating for themselves, and getting the care they need.

Parkinson’s in Public (April 2025)

April 2025

In this month’s Living with Parkinson’s Meetup, the panelists focused on what it’s really like to live with Parkinson’s out in the world—what it feels like to be seen, misunderstood, supported, or overlooked.

Multiple panelists shared how being open about their diagnosis–even wearing shirts that start conversations–has helped others better understand Parkinson’s. Others spoke about the harder side—moments when stigma or assumptions hurt more than the symptoms themselves—and the personal decisions involved in when, how, or if to share their story.

The group also reflected on the parts of themselves that aren’t always visible. Several panelists spoke bravely about what it’s like to navigate Parkinson’s while also being part of the LGBTQ+ community, and the fear that can come with feeling marginalized in more ways than one. Through every story, what stood out was the resilience, honesty, and heart that people living with Parkinson’s bring to their lives and communities, even when the path isn’t easy.

Hope vs. Hype: Navigating Parkinson’s Uncertainty (March 2025)

March 2025
In this March 2025’s Living with Parkinson’s Meetup, the panelists explored the emotional balance between hope and doubt, especially when navigating a steady stream of Parkinson’s news, research hype, and day-to-day unpredictability.

Love, Grief, and Relationships (Feb. 2025)

February 2025
In February’s Living with Parkinson’s Meetup, the panelists discussed how Parkinson’s impacts relationships—romantic, familial, and friendships—and how they navigate love, connection, and loss within the Parkinson’s community. The discussion also honored the late Doug Reed, a longtime panelist and friend to many in the community.

Navigating Emotions (Jan. 2025)

January 2025
January’s Living with Parkinson’s Meetup explored an essential topic: navigating changes in emotion while living with Parkinson’s. Our panelists shared their personal experiences, insights, and tools for managing emotional challenges. They also encouraged each other and anyone living with Parkinson’s to seek balance and find support in the Parkinson’s community. Below, we recap the highlights of the discussion.

Ways to Get Support (Nov. 2024)

Thursday, November 15, 2024

November is National Family Caregivers Month, and in honor of this, November’s panel discussion focused on the importance of care partners, support systems, and Parkinson’s care teams. Panelists shared personal stories of how they’ve found strength and support from their families, friends, and communities as they navigate life with Parkinson’s.

Exenatide, Infusion Levodopa, and Advice (Oct. 2024)

October 2024

The October Living with Parkinson’s Webinar Meetup focuses on discussion of two news items: an update about the phase 3 trial of exenatide and the United States Food and Drug Administration’s approval of the first continuous infusion carbidopa/levodopa system for treatment of motor fluctuations associated with advanced Parkinson’s.

Adaptive DBS, Symptom Tracking, and Exercise (Sept. 2024)

September 2024

This month, the regular panelist group welcomed a guest panelist, Ben Stecher, to join them for a conversation about exercise, tools for tracking Parkinson’s symptoms, adaptive deep brain stimulation (DBS), and more.

Emotional Health: Anger, Irritability, and Other Mood Changes (August 2024)

Thursday, August 15, 2024

This month, our Living with Parkinson’s Meetup panelists talked about the mood changes they have experienced and shared thoughts about how to navigate this aspect of living with Parkinson’s.

Temperature Regulation, Sleep, Pain, and Urinary Urgency (July 2024)

July 2024

This month, our Living with Parkinson’s Meetup panelists returned to the topic of non-motor symptoms. They discussed several common symptoms, including temperature regulation struggles, pain, fatigue and sleep disorders, and bowel and bladder issues. This conversation extends the conversation about non-motor symptoms the panelists had during the June meetup.

Apathy and Anxiety (June 2024)

Thursday, June 20, 2024

May 2024

During this month’s meetup, our panelists discussed their experiences navigating non-motor symptoms of Parkinson’s like apathy, pain, and cognitive impairment.

DBS, Pain, and Navigating Uncertainty (May 2024)

May 2024

During this month’s meetup, the panelists discussed the most important lessons they’ve learned while living with Parkinson’s, as well as some of the trickier lessons they’re working through.

Getting Things Done (April 2024)

April 2024

During our April Living with Parkinson’s Meetup, the panelists discussed how they continue to take action and communicate well while living with the many challenges of Parkinson’s.

Parkinson’s in the Media (March 2024)

March 2024

During our March Living with Parkinson’s Meetup, the panelists discussed the way media depictions and coverage of Parkinson’s affect their efforts to live well with Parkinson’s. Along with the audience, they also produced a playlist of songs related to Parkinson’s.

Love and Relationships (February 2024)

February 2024

Our February Living with Parkinson’s Meetup was scheduled for the day after Valentine’s Day, so naturally, the topic was love. The panel has tackled this topic before, but this time, they approached it in a new way.

Clinical Trials (January 2024)

January 2024

During this session, the panelists discussed clinical trial participation and personal experiments they’ve undertaken to help themselves live well with Parkinson’s.

Holiday and Year-End Stresses

Thursday, December 21, 2023

This meetup wasn’t originally on our calendar, but the end of the year can be a lonely and challenging time. As such, the panelists decided they wanted to spend time with one another and the members of the viewing community. During the meetup, the panelists discussed challenges related to the end-of-year holidays, their hopes for 2024, and more.

Q&A

Thursday, November 16, 2023

The Living with Parkinson’s Meetup panelists receive questions each month that they just don’t have enough time to answer during the hour in which the meetups are held. For November, they worked through some of the questions to which they had not yet responded.

Ongoing Challenges of Living Well with Parkinson’s

Thursday, October 19, 2023

In this month’s meetup, inspired by an audience member’s question, the panelists discussed the ongoing and evolving challenges they face as they live with Parkinson’s. As always, this panel doesn’t hold back, and we’re so fortunate to have them tell the hard truth and share their journeys with all of us.

Disability and Changes of Ability in Parkinson’s

Thursday, September 21, 2023

This month, the Living with Parkinson’s Meetup panelists discussed how Parkinson’s has changed their abilities, getting disability benefits, and how they have approached these changes.

This topic is extensive, and the panelists discussed many issues, including driving, stigmatization, leaving work, applying for disability benefits in the US, and global health disparities.

Vulnerability

Thursday, August 17, 2023

The panelists discussed moments when they were physically, emotionally, or socially vulnerable because of Parkinson’s. The panelists also discussed ways these vulnerabilities have sparked changes in their lives.

Relationships

Thursday, July 20, 2023

During our July Living with Parkinson’s Meetup, panelists discussed how their relationships have changed since being diagnosed with Parkinson’s. As always, our panelists speak with honesty and emotion and make everyone affected by Parkinson’s feel less alone.

Fear and Shame: Part 2

Thursday, June 15, 2023

During this month’s meetup, the panelists talked about shame and Parkinson’s, including a discussion of the differences between shame, guilt, and embarrassment.

Fear and Shame: Part 1

Thursday, May 18, 2023

In this month’s Living With Parkinson’s Meetup, we hosted the first of two sessions on fear and shame. Panel members discussed fears they had when they were diagnosed that didn’t come to pass, fears they had when they were diagnosed that did come to pass, and fears they currently have that they’re working through. They also offered some thoughts about how to navigate fears.

Q and A

Thursday, April 20, 2023

During this month’s meetup, we discussed recent biomarker news, navigating medical procedures with Parkinson’s, how to respond when people say the “wrong” thing to you about Parkinson’s, and tips for dealing with speech issues, brain fog, and episodes of freezing.

What I Wish I Knew Then

Thursday, March 16, 2023

During this session, panelists discussed what they wished they’d known when they were first diagnosed with Parkinson’s and the advice they’d like to share with others.

Love and Relationships

Thursday, February 16, 2023

During this session, we discussed love, relationships, and care partners, whether they be spouses, kids, friends, neighbors, etc. Watch the recording below and scroll down for our show notes and resources.

Finding Hope and Inspiration

Thursday, January 19, 2023

We started the session off with our typical lively conversation which included the introduction of guest panelist Sarah Zenner, quotes from Doug Reid, and Heather’s rapping, then moving into a conversation about finding hope and optimism despite the difficulties of Parkinson’s.

Gait, Balance, and Falling in Parkinson’s

Thursday, November 17, 2022

We had our typical lively discussion, received some great advice from our panelists and our viewers, and learned how to face the fears that falling causes. Unfortunately, this is our last meetup of the year, but we look forward to seeing you in January of 2023!

Parkinson’s is Hard

Thursday, October 20, 2022

In this Living with Parkinson’s Meetup, panelists discuss symptom limitations, nutrition, depression, apathy, and isolation.

Ableism, Enableism, and Audience Q & A

Thursday, September 15, 2022

In this Living with Parkinson’s Meetup, panelists discuss ableism and enableism, that is feeling capable and “able” to continue living as independently as possible, but also accepting and asking for help when it is needed. Other topics include, how to get past the fear of letting your symptoms show, dealing with anger and sadness when you’re unable to do something, and more.

Audience Q & A

Thursday, August 18, 2022

In this Living with Parkinson’s Meetup, panelists discuss questions from the live webinar audience addressing topics including: difficulties managing body temperature in hot weather, falling and balance issues, the impact of stress on their symptoms, the loss of friendships after diagnosis, handling the constant question “how are you?” from friends and family, and much more.

The Value of Community, Purpose, and Meaning

Thursday, July 21, 2022

In this webinar, guest panelist, Bradley McDaniels, and Living with Parkinson’s panel members discuss the negative health effects of loneliness and how to build community, purpose, and meaning.

Reaching Your Limit

Thursday, May 19, 2022

In this webinar, The YOPD Council discussed how to know when you’re reaching your limit and discussed things such as driving, work, exercise, executive function, and more.

Downsizing Your Life with YOPD

Thursday, April 21, 2022

In this webinar, The YOPD Council discussed downsizing, both mentally and physically.

Traveling with Parkinson’s

Thursday, March 22, 2022

In this webinar, The YOPD Council discuss their tips and tricks for traveling more easily with Parkinson’s, while also addressing the question: is travel still right for me?

What Not to Say to a Person with Parkinson’s

Thursday, February 24, 2022

In this YOPD Council session, our panelists discuss some of these moments in their life as well as what you can do to educate, advocate, and improve understanding.

Living with Parkinson’s Meetup Panelists

Stephanie G Johnson, MSSW
Stephanie G Johnson, MSSW
Fitchburg, Wisconsin
Robert Turner
Robert Turner
New Orleans, Louisiana