Living with Parkinson’s can sometimes feel like navigating a world that is pulling away just when connection matters most. At our April 7, 2025, Lunch & Learn, people from the Parkinson’s community and members of our Program Advisory Council gathered to talk candidly about social isolation and the challenges of staying connected. Their stories offer practical insights and strategies to support others in the Parkinson’s community.
1. Understanding the Barriers to Connection
Parkinson’s doesn’t just affect mobility and speech—it impacts emotional energy, confidence, and the logistics of getting out into the world. Participants spoke openly about the ways apathy, fatigue, fear of judgment, and physical limitations contribute to isolation.
“Apathy hits without warning and suddenly even going somewhere you were excited about feels impossible.”
— Megan Taye
“For me, it’s fatigue. I want to do everything. But my body just won’t let me.”
— Caren Masem
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:
- Schedule connections: Identify times of day when energy is highest and plan social interactions at those times.
- Start small: Commit to brief, low-effort engagements—like a 10-minute call or a short walk with a friend.
- Use accountability partners: Ask a trusted friend or family member to check in or attend events together.
2. Redefining Support and Relationships
One of the most difficult changes Parkinson’s brings is in relationships. People may drift away out of discomfort, while others become unexpected lifelines.
“If a relationship requires you to dismiss those elements of yourself, do you really want to engage with that person?”
— Serena Griffin
“We find ourselves spending time with people who can meet us emotionally—who aren’t uncomfortable with where we are.”
— Bestin Roy
Participants highlighted the emotional toll of missing events or needing to change plans last-minute. The impact is felt not only by the person with Parkinson’s, but also their partners, friends, and family members.
“Sometimes it’s my husband stepping in and saying, ‘I’ve got it.’ And that’s hard. There’s guilt.”
— Amy Lavallee
Strategies include:
- Emotional distance: Understand that some people may not know how to respond to the challenges PD brings.
- Communicate openly: Explain how Parkinson’s affects your energy, needs, and emotions—even if it takes time.
- Boundaries: Avoid interactions that drain your energy; preserve your capacity for meaningful connection.
3. The Role of Care Partners
Care partners shared their own struggles: pushing too hard, not pushing enough, carrying emotional weight, and wanting to preserve their partner’s independence.
“I push him sometimes, because I know he’ll be glad he went. But I try to respect when it’s too much.”
— Cynthia Caudill
“The decisions we make together affect our future. It’s hard to separate cause and effect.”
— Laurie Kilbourn
Some expressed gratitude for support, others described the exhaustion that comes from navigating every detail. As Jess put it, it’s a two-way street:
“Even if I feel like crap, I try. Because of everything she does for me, I can make that effort.”
— Jess Caudill
Strategies include:
- Encouragement: Encourage participation without judgement.
- Shared Decision-Making: Communicate openly about expectations and limits for both partners.
- Make plans together: Intentionally schedule activities, adjusting for both energy levels and desires.
4. Planning for Connection
Despite the challenges, the group emphasized the importance of thinking ahead to make the best of each occasion.
“I bring a folding stool, snacks, and water everywhere I go—just in case.”
— Amy Lavallee
“If I know where I’m going to park, how far to walk, and what help is available, I’m more likely to go.”
— Serena Griffin
“Even knitting during a Zoom call helps me stay focused and feel connected.”
— Caren Masem
Strategies include:
- Accountability: Knowing someone is counting on you can help overcome apathy.
- Routine and scheduling: Structuring social interactions and exercise helps with energy planning.
- Virtual engagement: Zoom and online groups provide low-barrier ways to stay involved.
- Accessibility planning: Pre-scouting venues and packing aids like stools or trekking poles makes outings more feasible.
5. Community and Peer Support
Many shared the value of community—especially other people living with Parkinson’s. Mentors, peer matches, and support groups help normalize the experience and ease loneliness.
“I tell people to find peer support—someone you can talk to who really gets it.”
— Sharon Kishner
“Being around people with Parkinson’s helped me move past the shame. I realized I’m not alone.”
— Jay Freyensee
“I live in a small town. I have a lot of friends that don’t have Parkinson’s, but when they run into people who do have it, they have them call me.”
— Cathie Baker
“Just ask for help, because most of time, someone will help you.”
— Lynn Hubert
“When I’m really down, I do something for someone else. It gets me out of my own head.”
— Caren Masem
Strategies include:
- Plan ahead: Schedule activities based on your best times of day and energy levels.
- Ask for help: It’s not weakness—and it can be a positive opportunity for the person helping.
- Prioritize your people: Focus on relationships that make space for your full experience.
- Advocate for accommodations: Ask venues and organizers for what you need.
- Find your fit: Join interest-based groups (crafting, car clubs, book clubs) to connect naturally.
The voices shared at the Lunch & Learn serve as a powerful reminder that connection is not only possible, it’s essential. Social isolation can cast a long shadow, but through intentional planning, honest communication, and the strength of community, people with Parkinson’s can find meaningful ways to engage and belong.
