What Does it Mean to be Living Parkinson's?
- syellen63
- Jan 21
- 3 min read
When people are diagnosed with Parkinson’s, the first questions are often medical: What medication will I need? What symptoms should I expect? Those are important questions—but they’re only part of the picture. Parkinson’s is not something you manage only in a doctor’s office. It’s something you live with every day, and how you live with it matters.
That realization is what led me to write Living Parkinson’s. The book is built around practical strategies that help people move from passivity to participation. It’s not about chasing a cure or following a rigid formula. It’s about creating a framework that enables you to live well—on your terms—while doing everything you reasonably can to slow progression and maintain quality of life. The first five chapters form the foundation of that approach.
Attitude — Where the Work Begins
Attitude is often misunderstood. It doesn’t mean ignoring reality, forcing optimism or pretending Parkinson’s isn’t difficult. It means recognizing that how you respond to the diagnosis shapes what follows. Early on, I learned that trying not to think about Parkinson’s felt protective, but in practice it led to avoidance. Avoidance didn’t stop progression—it simply delayed action.
Shifting my attitude didn’t mean surrendering to Parkinson’s; it meant acknowledging it and choosing to engage. That shift reframed Parkinson’s from something happening to me into something I would actively address. Attitude becomes the lens through which decisions are made—whether to learn more, seek support, move your body or speak up. Without that shift, the best information and resources often go unused.
Education — Knowledge Creates Options
Parkinson’s is complex, and the volume of information can be overwhelming. Education isn’t about becoming an expert in neurology; it’s about understanding enough to make informed choices. That includes learning about symptoms, medications, exercise, research and lifestyle factors—but just as important is knowing which sources are credible and which aren’t.
Education creates context, and context creates options. When you understand why something matters—why certain types of exercise are recommended or why sleep affects symptoms—you’re more likely to act on that information. Education also changes conversations with healthcare providers. Instead of passively receiving instructions, you’re able to ask better questions, weigh tradeoffs and participate in decisions about your care.
Support — You Don’t Do This Alone
Parkinson’s doesn’t affect just one person. It affects families, partners and friends, whether or not they’re prepared for it. Support comes in many forms: emotional, practical, medical and peer-based. One of the most important lessons I’ve learned is that asking for support is not a sign of weakness, it’s a strategy for sustainability.
Support also extends beyond immediate relationships. The Parkinson’s community is broad and diverse, and connecting with others who are further along—or simply facing similar challenges—can be invaluable. Support groups, online forums and community programs provide perspective and reassurance. They remind you that while Parkinson’s is personal, it’s not unique—and that others have found ways to adapt, adjust and move forward.
Exercise — A Non-Negotiable
Exercise is one of the few interventions shown to potentially slow Parkinson’s progression, yet it’s often treated as optional or secondary. For me, learning about exercise fundamentally changed how I approached living with Parkinson’s. What mattered wasn’t simply that exercise was important, but also how to do it effectively and consistently.
Incorporating multiple types of movement—aerobic exercise, strength training, balance and flexibility—provided a practical framework. It turned an abstract directive into something actionable. Exercise became structured, intentional and repeatable. Over time, it wasn’t just about physical benefits. It improved confidence, independence and resilience. Movement became a way to stay engaged with life rather than retreating from it.
Wellness — Stacking Small Advantages
Wellness is the environment in which everything else operates. It includes exercise, nutrition, sleep, stress management and recovery—all factors that have a meaningful cumulative effect. None of these elements is a cure, but together they tilt the playing field in your favor.
Wellness is about consistency, not perfection. Small adjustments—such as eating better most of the time, prioritizing sleep and managing stress more intentionally—compound over time. These choices support both physical and cognitive health and make it easier to sustain exercise, focus and engagement. Wellness isn’t about control; it’s about creating conditions that support the best possible outcomes.
Building Forward
Living Parkinson’s isn’t about doing everything at once. It’s about building forward, step by step, using a framework that adapts as circumstances change. Attitude sets the direction. Education provides clarity. Support creates stability. Exercise builds capacity. Wellness sustains the effort.
These first five chapters of Living Parkinson’s are the foundation of that framework. Together, they offer a way to move from reaction to intention, from uncertainty to agency. Parkinson’s may change the path, but it doesn’t take away your ability to shape the journey.
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