Each month, our Care Partner Meetup offers a place to connect, exhale, and learn alongside others who understand the realities of caring for someone with Parkinson’s. This month, participants joined from across the U.S. and Canada, including Atlanta, Boulder, Naples, Prescott, Maple Ridge, Toledo, Toronto, Anchorage, and beyond, arriving with questions, worries, and hopes that resonated throughout the group.

Hosted by Connie Carpenter Phinney and featuring longtime care partner ambassadors Gail Gitin and Pat Donahoo, the meetup welcomed a special guest this month: psychologist Dr. Sara Gilloth.

The meetup conversation focused on the emotional and cognitive complexities that shape daily life with Parkinson’s. Topics included anxiety, resistance to help, cognitive decline, mood swings, and how to prepare for medical visits—all areas where care partners frequently seek guidance.

In the chat, one participant wrote, “No one understands what it’s like to be a care partner except another care partner.” That sentiment echoed throughout the chat and set the tone for an hour of honest, empathetic connection.

This recap highlights the themes that emerged during the conversation. Watch a recording below, and find links referenced in the chat and by the panel at the bottom of this page

When Anxiety Doesn’t Look Like Anxiety

Anxiety surfaced almost immediately as a central challenge. Care partners described visible symptoms—tremors, freezing, irritability—that the person with Parkinson’s didn’t necessarily label as anxiety. Some participants shared how much support they needed, with one saying, “I am a better care partner since I started an antidepressant.”

Dr. Gilloth explained that anxiety in Parkinson’s often presents differently. It can appear physically rather than emotionally, and overstimulating environments like airports or busy stores can trigger symptoms even when someone insists they are fine.

Pat added that anxiety can be persistent and hard to manage without the right tools and support. Over time, care partners often become more attuned to subtle signs than the person experiencing them.

Understanding Cognitive Change and What to Watch For

Cognition was another major theme. Care partners asked how to recognize decline, what constitutes “normal aging,” and how to interpret fluctuations.

Dr. Gilloth emphasized that cognition should always be evaluated relative to a person’s baseline. Someone with very high historical functioning may score “average” on a test and still be experiencing meaningful decline. She also noted that executive function—planning, organizing, shifting between tasks—is often among the first areas affected.

The conversation also included discussion of how difficult it often is to evaluate changes in symptoms—cognitive and otherwise. Many in the meetup agreed that their loved one’s symptoms often appeared worse at home than during clinical visits. Dr. Gilloth reassured the group that these fluctuations are common and, importantly, well understood by clinicians.

Questions about Lewy body dementia (LBD) emerged, and while diagnosis is ultimately the responsibility of neurologists and neuropsychologists, Dr. Gilloth provided general orientation: in LBD, cognitive symptoms tend to precede motor ones; in Parkinson’s disease dementia, cognitive decline tends to appear later.

Preparing for Appointments: The Art of Advocacy

Following the discussion of how common it is for symptoms to seem better at the doctor’s office than at home, many care partners expressed frustration about medical appointments where their person seemed “fine,” making it difficult to communicate their concerns as care partners. In particular, they worried about not being believed or not having enough time to explain the issues they were seeing.

Dr. Gilloth encouraged bringing specific examples—exact incidents, repeated questions, sleep changes, emotional outbursts. Clear observations help clinicians see a fuller picture than a short in‑office interaction can provide.

Connie emphasized the importance of preparing ahead and asking permission to record appointments so both partners can revisit what was discussed.

Gail shared her long‑trusted strategy: keeping a dedicated notebook with notes from every appointment, every symptom change, and every question. Many participants noted they planned to adopt this approach.

Pat added the importance of building relationships not only with neurologists but with the entire care team, including nurse practitioners, physician’s assistants, and administrative staff. These connections often make it easier to navigate paperwork, referrals, and urgent questions.

Denial, Pride, and the Complex Dynamics of Resistance

One of the most emotionally resonant parts of the conversation centered around resistance—when the person with Parkinson’s refuses help, avoids discussing symptoms, or insists nothing is wrong.

Several care partners expressed how painful this can be. One wrote, “My wife does not want to talk about it. I desperately want to help.”

Pat offered insight into a dynamic he’s encountered often: “Most of the people we’re working with are men with Parkinson’s… and we’re dealing with the pride aspect of being a guy that says, ‘There’s nothing wrong with me.’” His perspective helped normalize a struggle many attendees face.

Dr. Gilloth explained that sometimes, the most effective support begins with the care partner—not the person with Parkinson’s. Therapy can help caregivers navigate grief, communication challenges, and emotional overload in ways that positively affect the whole household. Connie echoed that getting support isn’t giving up on your person; it’s strengthening your own capacity to keep showing up.

Mood Swings and Emotional Rhythms

Later in the conversation, care partners asked how to manage mood swings and emotional volatility, especially when medication cycles contribute to emotional reactivity.

Dr. Gilloth suggested anticipating emotional “weather patterns” and preparing for them—much like preparing for an approaching storm. She highlighted techniques such as grounding strategies, pleasant activity scheduling, and simple “coping cards” with reminders that help during overwhelming moments. The goal, she noted, isn’t to eliminate mood swings but to soften their edges.

Connie added that sometimes “changing the channel” is the most effective move—helping the person shift out of a stuck emotional pattern.

Closing Reflections: You Don’t Have to Do This Alone

As the session ended, the chat filled with gratitude. One attendee wrote, “Thank you everyone… you are the very best.”

Connie closed the meetup with her familiar encouragement: to care for others, you must also care for yourself. Self‑care for caregivers isn’t indulgence—it’s survival.

This month’s meetup once again underscored the power of community. When care partners gather, share honestly, and support each other, they help carry one another through the hardest parts of this journey. No one has to do it alone.

Additional Resources

Care Partner Resources

What is Geropsychology?

Differences between Lewy Body Dementia and Parkinson’s

Medication and Parkinson’s Blog

Hallucinations and Delusions: A Primer

Managing Parkinson’s Psychosis

Mental Health Impacts of Parkinson’s Blog

Advice for the Newly Diagnosed

Maximizing the Next 15 Minutes with Your Doctor

Care Partner Mental Health Webinar Recap

Living Well with Advanced Parkinson’s Blog

Mental Wellness Webinar Recap