Our Lunch & Learn series continues to explore topics that support living with Parkinson’s disease. On October 20, 2025, members of our Program Advisory Council and others in the community discussed how people with Parkinson’s and their care partners navigate roles, boundaries, emotions, daily life, and community support. Participants shared lived experiences, practical strategies, and resources for others in the Parkinson’s community.  

The Partnership

What “care partner” means (and why it varies)
Participants emphasized that “care partner” can be a spouse, family, friends, clinicians, or a broader circle—whoever shows up to help. “A care partner can be more than just one person, it can be anybody that is there helping you out.” — Marlene K

For those living alone or without nearby family, “Providers and drivers often become essential partners.” — Sharon K

Role identity
The role of some partners can change over time: “I feel like ‘husband’ is sufficient right now, but this is an ever-evolving disease. I’m riding in the car that’s going down the Parkinson’s road.” — Bestin R

“Our relationship didn’t change when I got Parkinson’s, but it changed when my partner learned what his role is. That has made me feel like he’s more of an involved care partner.” — Marlene K

Engaging care partners
Going to care partner meet ups and attending doctor appointments have motivated some partners: “He came out of that session saying, ‘I’m going to your doctor’s appointments with you now.’ Since then, he pays attention when I have a new symptom.” — Marlene K

“Listening to others who are going through the same experience can help reluctant partners tiptoe in and feel less exposed. — Amy L

Partnership takeaways

Encourage engagement with other care partners in the Parkinson’s community as well as seeking out other resources for support.e. I want to do everything. But my body just won’t let me.”
— Caren Masem

Define who’s in your care circle (home + clinic + community).

Revisit roles regularly; what works this month may change.

List it, label it, and schedule it. Once the tasks are visible (documented, listed, and time-bound), they’re no longer silently defaulting to one person.

Others described anxiety about being misunderstood or perceived as “lazy” or “fine,” especially when symptoms aren’t visible. Speech issues, mobility challenges, and the mental toll of constant planning also came up often.

“It’s exhausting to plan out each step you take so you avoid situations. And that leads to more isolation.”
— Jess Caudill

“I used to just show up and be myself. Now I think about everything—how I feel, how I’ll be perceived.”
— Steve Stryker

Strategies include:

Emotional Impact

Different coping styles
People described having different ways of coping as being challenging to work through. One member shared how their cultural/family norms discouraged talking about illness or emotions—making PD conversations hard until new habits formed. “Everybody grows up in different homes with different communication styles. My family was open. My husband grew up in a family that avoided talking about emotions so that’s been something we’ve been working on.” — Megan T

Guilt and care-partner fatigue
Stories were shared about care partners who voiced guilt about feeling tapped out and pressure to be “superhuman” while putting their own needs aside. Sometimes it makes sense to agree on scheduled “me time” for the care partner.  “The caregiver has a life and has needs also. Sometimes you have to give in and that piece is sometimes left out.” — Lynn H

Communication

Much of the discussion centered around clear communication and when to say what. Clear “ask vs. anticipate” awareness helped couples avoid over or under helping: “He doesn’t need to say ‘let me help you’ when I’m trying to do something myself. And, no calling across a room, ‘Did you take your meds?!’” — Lynn H

“My husband will sometimes say, ‘Are you parkie?’ or ‘Are you waiting for the bus?’” (waiting for meds to kick in). — Amy L

What helps emotionally

Resources & Community

Final Thoughts

This conversation underscored a shared truth: care and independence can coexist when couples name fears, set clear agreements, adopt small communication tools, and build community around them. Whether you start with a code word, a shared note, or a single event, each step strengthens the partnership—today and for whatever comes next.

See more Lunch and Learn session resources:

Talking About Your Parkinson’s with Others

Speech Challenges and Communication Strategies for People with Parkinson’s

Social Isolation and Building Connections for People with Parkinson’s