Finding Balance: Navigating Life as a Parkinson’s Care Partner

Caring for someone with Parkinson’s is an act of love, patience, and resilience—but it’s also one of the hardest roles anyone can take on. During a recent webinar featuring Dr Mark Mapstone, a neuropsychologist from Irvine, California, alongside long-time care partners Pat Danahoo and Gail Giten, the discussion turned honest, raw, and deeply practical. It wasn’t about clinical checklists or perfect routines. It was about the messy, emotional, real-life challenges that come with Parkinson’s—how to balance care with your own wellbeing, how to separate the person you love from the disease that’s changing them, and how to find joy amid frustration and exhaustion. Understanding Parkinson’s “Triad” Dr Mapstone explained that Parkinson’s affects far more than movement. Most people are familiar with tremors, stiffness, and slowness, but there are two other equally important areas impacted by the disease: cognition (thinking and memory) and mood (depression, anxiety, apathy). Together, these make up what he calls the “triad” of Parkinson’s symptoms. Sometimes, a “fourth” category comes into play too: autonomic symptoms, which affect things like blood pressure, bladder function, digestion, and temperature control. These non-motor symptoms can be just as disruptive as tremors—and often harder to spot or manage. Understanding this full picture is crucial for care partners. Behaviours like withdrawal, irritability, or seeming “not themselves” often aren’t personal—they’re neurological. Separating the Person from the Disease One of the biggest emotional challenges for care partners is reconciling the person they’ve always known with the changes Parkinson’s brings. When your loved one seems distant, apathetic, or irritable, it’s natural to feel hurt. Dr Mapstone suggested a powerful mental strategy: visualisation. Some care partners picture Parkinson’s as a cloud hovering around their partner or even as a separate “shadow self” standing nearby. This helps shift perspective—reminding you that the behaviours are symptoms, not personal choices. Gail shared how transformative this realisation was for her: “At the start, I didn’t understand. I thought he was doing these things on purpose. When I finally realised everything—everything—was connected to Parkinson’s, my frustration shifted into a softer kind of sorrow. It wasn’t him. It was the disease.” Educate Yourself, Protect Your Energy Knowledge, Dr Mapstone stressed, is a care partner’s greatest tool. Understanding what might happen and why helps reduce shock, guilt, and knee-jerk reactions. Join support groups. Read books. Attend webinars like this one. The more prepared you are, the less likely you’ll spiral when something unexpected happens. But education alone isn’t enough—you also need grace for yourself. No one gets this perfect. You will lose your patience. You’ll make mistakes. And that’s okay. Pat shared how he reframed his own expectations: “I used to beat myself up for snapping or acting poorly. Now I try to redirect. I look at old photos, remember who we are, and focus on what we can do instead of what we’ve lost.” Finding Joy Where You Can It’s easy for life to become consumed by symptoms, medications, and appointments. But the panelists emphasised carving out small, meaningful moments that remind you both of your connection. Gail recommends slowing down and savouring simple things: holding hands, watching a show, playing a board game, looking through old photos, or reminiscing about past travels. These aren’t luxuries—they’re lifelines. Pat calls it “finding joy in the journey”: “We used to ride across the country on a tandem bike. We can’t do that now—but we can still sit together, look at pictures, and remember. We focus on what we can do today instead of mourning what we can’t.” Building the Right Care Team Many attendees shared frustration about struggling to find professionals who understand Parkinson’s beyond the basics. Dr Mapstone recommended, where possible, working with a movement disorder neurologist—specialists who live and breathe Parkinson’s care. He also highlighted the role of neuropsychologists in assessing cognitive and mood changes, though these specialists can be hard to access. If one isn’t available, there are alternatives: Geriatric psychiatrists Therapists trained in neurological conditions Speech and occupational therapists who understand Parkinson’s cognitive aspects And above all, advocate for yourself and your loved one. If a doctor dismisses concerns about mood, cognition, or quality of life, keep pushing until you find someone who listens. Letting Go of Perfection One recurring theme throughout the webinar was guilt—care partners feeling they’re never doing enough or never doing it right. Dr Mapstone’s advice was simple but freeing: “Perfection is the enemy of good. You don’t have to get it all right. If your person is dressed—even if the clothes don’t match—you’ve succeeded. Focus on what matters most and give yourself permission to let the rest go.” Cherishing the Person, Cherishing Yourself Throughout the session, one word kept surfacing: cherish. Cherish the small wins, the quiet moments, the shared memories. But also cherish yourself. Caring for someone with Parkinson’s is an extraordinary act of love. It’s also exhausting, relentless work. You can’t pour from an empty cup, and you don’t have to carry this alone. Support groups, therapy, podcasts, favourite photos, silly cat videos, journaling, gratitude practices—all of these can help you refill your reserves and reconnect with who you are outside of the role of “carer.” Parkinson’s reshapes lives—not just for the person diagnosed but for everyone who loves them. The emotional toll is real. The frustrations are real. But so are the opportunities to find meaning, connection, and even joy along the way. You won’t do it perfectly. You’re not supposed to. As Dr Mapstone put it: “Your person needs you present, not perfect.” And sometimes, that’s more than enough.