Notes from the Care Partner Meetup: January 2025

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For our January 2025 meetup, we were pleased to welcome special guest Al Condeluci, a longtime advocate for inclusion. In our conversation, Al highlighted the importance of community connections for care partners of people living with Parkinson's.

Al’s father had Parkinson’s, and Al’s experience as both a family member and a professional in social advocacy brought invaluable insights to our conversation.  

Our trusted panel is led by DPF co-founder Connie Carpenter Phinney, the care partner for her husband Davis. The panel also features two care partners, Gail Gitin and Pat Donahoo. Polly Dawkins, Executive Director of the Davis Phinney Foundation, moderated the meetup. 

If you haven’t already signed up to attend our sessions live, you can do so today. 

MEETUP NOTES

BREATHING AND CENTERING IN THE NEW YEAR

We began our session by grounding ourselves with a calming breathing exercise. Using the box breathing method—inhaling for four counts, holding for four, exhaling for four, and holding again—we centered ourselves in the present moment. Breathwork is such a simple and powerful tool for reducing stress and finding equilibrium.  

ADDRESSING ISOLATION

Al Condeluci opened the discussion by sharing his perspective on isolation. Drawing from his years of experience, Al highlighted the importance of fostering community connections and explained the concept of social capital—the value derived from our relationships.  

Al shared that his father often self-isolated during his Parkinson’s journey, and their family worked hard to keep him engaged. He emphasized that while virtual connections, like this meetup, are valuable, nothing can fully replace the benefits of in-person interaction, including eye contact and shared physical space. Al has written and lectured about loneliness and isolation, including about the biology of loneliness. He described how loneliness could be measured via the UCLA Loneliness scale 

Regarding isolation, Gail observed, “The best way to care for yourself is to get out with other people and socialize. It’s not just about massages or pampering; it’s about living.”  

OVERCOMING GUILT AND FINDING BALANCE

A recurring theme throughout the discussion was the sense of guilt many care partners feel. This feeling may result from a care partner taking time for themselves, leaving their person with Parkinson’s at home, or even just because of a moment of frustration. On this subject, Gail noted, “You have a choice: you can feel guilty about leaving, or you can come back refreshed and in a better state of mind. Either way, guilt will be there, but one option serves you both better.”  

Some of the thoughtful questions and reflections from those in our live audience included: 

  • How do I balance my own social needs with the demands of caregiving? 
  • Does staying socially active early in the Parkinson’s journey make a difference later?

These reflections led to a discussion about practical strategies for achieving balance. Suggestions included scheduling outings with friends, participating in hobbies, and joining support groups. Just as important is finding ways to have your person with Parkinson’s cared for early in the process if possible, so you—the care partner—can get away to exercise, socialize, and maintain meaningful social relationships. 

Al also argued for us to advocate for more policies that would allow us—as care partners—to find affordable attendant care. This type of care is what many of us need as our person with Parkinson’s progresses, but it is largely unavailable due to the steep cost of paying someone to help with daily tasks. However, Al observed that every state or community has options, and he advised us all to research our options to see what might be available to us.  You can also consult resources like those at care.com. 

THE POWER OF INCLUSION AND EDUCATION

We discussed how educating friends and family about Parkinson’s symptoms can make social interactions and social gatherings go more smoothly. It’s not always easy, but it can make a huge difference. Sharing details about Parkinson’s and what a person you haven’t visited with recently could expect helps build understanding and creates more inclusive environments.   

We also discussed, however, that educating others is not necessarily something you’ll always have the time and energy to do. And that’s OK. One way around this challenge could be to develop a standard communication—a text message or email—that you share with people who may not have a good understanding of Parkinson’s and who are close friends or family. You can include links to our website content, or even to these notes and the recordings of our conversations that the Foundation produces.  

Al emphasized the simplicity of the “golden rule” by suggesting that anyone helping a person with Parkinson’s might ask, “If this were me, how would I want to be treated?” You could pass this on to the people you socialize with occasionally, who might be less familiar with your person’s experience.  

STRATEGIES FOR BUILDING COMMUNITY

Pat shared his journey of finding community in Las Vegas, where he and his wife joined local Parkinson’s support groups. He spoke about the transformative power of shared experiences, both for care partners and those living with Parkinson’s. Al echoed this sentiment, explaining how connection combats the “lethality of loneliness.” It has even been said that isolation and loneliness are as bad for your health as smoking up to 15 cigarettes a day.  

Gail encouraged us to “find joy in the little victories” and reminded us that building a support system takes time but is well worth the effort. She also said the community that she has built with other care partners and with people with Parkinson’s has enriched her life. She encourages all of us to reach out to others with this shared disease and hints that we might be pleasantly surprised by what we gain from the experience. 

Al also argued for inclusion and used an example of his father, who had Parkinson’s. His dad was a lifelong jazz musician and journalist who had interviewed some of the jazz greats, but that later in his life, Parkinson’s prevented him from playing. At some point, his family got him to go back and just listen to jazz and revisit his connections. Even though he could no longer participate, he was there and over time felt included. He encouraged our listeners to help their person—or themselves—to revisit old passions and get back to what they love no matter what their level of participation might be.  

AUDIENCE QUESTIONS AND INSIGHTS

Our audience brought thoughtful questions to the table, asking for actionable recommendations and advice for navigating caregiving challenges. One question focused on strategies for staying social early in the Parkinson’s journey and whether that has long-term benefits. While empirical evidence may be limited, Al shared that his experience strongly suggests that early engagement can build resilience for more challenging times.  

WE ARE HERE FOR YOU

This month’s session served as a powerful reminder of the strength and resilience within our community. Remember, you are not alone in this journey. Please reach out and continue to build or develop your community. The Davis Phinney Foundation and our Ambassadors are here to support you every step of the way. Please reach out to an ambassador or email us at [email protected] 

In closing, please remember Gail’s remarks at the end of this month’s meetup: “Take time to hold your person’s hand. It’s these moments of connection that we’ll remember most.” 

ADDITIONAL RESOURCES

UCLA Loneliness Scale Description 

Take the UCLA Loneliness Scale Questionnaire 

Hardwiring Happiness by Rick Hanson 

How to Reduce Social Isolation While Living with Parkinson’s 

Empathy Fatigue: How Stress and Trauma Can Take a Toll 

Every Victory Counts Manual and manual for Care PartnersWANT MORE PRACTICAL ARTICLES LIKE THIS?

You can learn much more about living well with Parkinson’s today through our Every Victory Counts® suite of resources. Each manual is packed with up-to-date information about everything Parkinson’s. Click the link below to order your manual(s).

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