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.
Recognizing Emotional Challenges
Living with Parkinson’s often comes with emotional challenges, including depression, anxiety, and apathy. These can be some of the most difficult symptoms to manage, as they influence not only how you feel but also how you interact with others and engage with daily activities.
Based on their experiences talking with people with Parkinson’s, the panelists emphasized that complex emotions are common among people with Parkinson’s. They also observed that these same interactions had shown that complex emotional experiences of Parkinson’s are manageable with the right strategies and support. These strategies are a central part of the conversation, and we hope you’ll take the time to watch the recording, which we provide at the top of this post, to hear more details than we provide in this post.
It’s worth noting, though, that many in the audience also shared personal experiences and strategies, including experiences dealing with apathy, anxiety, and facing fears around medication changes. Examples of strategies that people found helpful include Cognitive Behavioral Therapy (CBT) for managing depression and anxiety, as well as mindfulness practices, yoga, and establishing some routines–especially related to exercise.
Finding Support Through Community
Another important strategy mentioned in the Meetup is to make the Parkinson’s community a source of connection and inspiration in your life. Multiple panelists shared that engaging with local support groups, Davis Phinney Foundation Ambassadors, or even online forums can make a profound difference. For example, Larry said, “There’s a bond we have in the Parkinson’s community. We get what others are going through, and that support is invaluable.”
Building a diverse support network—including friends, family, and healthcare providers—is key. Members of the meetup audience noted that communicating openly about needs and setting boundaries are important aspects of maintaining healthy relationships.
Navigating complexities in Relationships
Living with Parkinson’s and the emotional changes that come with it can affect how you interact with others. For example, the panelists discussed how emotional changes combine with facil masking can complicate social relationships by making emotions harder for others to read and lead to misunderstandings. Being candid about these changes and mentioning changes related to facial expression can help foster better understanding.
The panelists also spent some time focusing on navigating dynamic emotional relationships with care partners. Whether your care partner is your spouse, a family member, or a friend, the relationship requires open communication and mutual understanding. The panelists recommended:
- Setting aside “neutral time” to discuss feelings and changes
- Balancing independence with support by asking for help only when needed
- Encouraging care partners to pursue their own goals and find their own support systems.
The panelists also talked about how conversations with care partners can be difficult. On this subject, Kat Hill recommended opening conversations that may be challenging by discussing how you feel rather than how a situation “is.” On a similar note, Karen Frank noted, “I’ve learned to be intentional about supporting my partner’s dreams. It’s about being present for each other.”
Tools and Resources for Navigating Emotions
Practical strategies discussed during the webinar included:
- Incorporating physical activities like yoga and gentle somatic exercises into your regular routine
- Using reminders (like post-it notes) to stay organized and motivated
- Recognizing the value of professional help for managing emotional and physical symptoms, and avoiding the stigma sometimes associated with this.
Kat Hill also highlighted the power of gratitude and small victories: “Even on tough days, I celebrate the little wins. It keeps me moving forward.”
Looking Ahead
The session ended on a hopeful note, with participants sharing their intentions for 2025. Whether it’s seeking more connections, embracing new tools, or focusing on self-care, the message was clear: you are not alone on this journey.
Additional Resources
Mindfulness-Based Stress Reduction and Parkinson’s