When you are first diagnosed with Parkinson’s disease, well-meaning family and friends are often quick to offer a familiar refrain: “Don’t let your disease define you.”

As a person living with Parkinson’s, you might even look at your own journey and feel compelled to pass along the exact same advice to someone who just received the devastating news.

One evening, I reflected on that recommendation and asked myself: Have I let my PD define me? Would I make that same recommendation to a fellow Parkinson’s warrior?

On the surface, there are clear examples in my life where I have actively shed the persona of a patient with a progressive neurological condition. When I’m talking to someone new, instead of leading with my diagnosis, I share how proud I am of my children or what I’m most looking forward to on an upcoming trip. When catching up with an old friend, I deliberately steer the conversation toward things other than which of my symptoms are progressing faster than others. Likewise, when others have sought my support, I’ve encouraged them to build a daily practice of gratitude. The implication is simple: if you focus on what is going well, it becomes easier to endure what is not.

Reflecting on these habits left me feeling good about my response to an unwelcome diagnosis.

Then, just as I was giving myself a virtual pat on the back, the opposite thought struck me.

In many ways, I have very much let Parkinson’s define me, just not in the most obvious sense. In fact, ignoring that classic refrain has undeniably made my life richer.

When I was forced into a reluctant retirement at age 45, the transition from full-time work was utterly disorienting. I was staring down a future I hadn’t planned for, grappling with a confusing path to diagnosis, and facing the harsh, volatile realities of managing a progressive neurological condition. It was a dark, difficult time. But healing began when I stopped fighting reality and started letting it shape a new direction.

I’m not alone in that shift. I have since found a community of advocates, many of whom are fellow authors in this very series. We are a community built on resilience, and together, we live by a few rules:

1. Find Your Voice as an Advocate

I stumbled into an unexpected second career, one not measured by progressive titles, but built on advocacy, vulnerability, and genuine connection. I began sharing my experiences and wellness strategies with anyone who would listen. Before long, friends, former colleagues, and even my own physicians started asking if they could introduce me to loved ones or coworkers who had just been diagnosed and were losing hope.

The more time I spent helping others navigate their symptoms, find answers, and access resources to live well, the more my own confidence, motivation, and purpose returned. Helping others thrive with Parkinson’s has brought a sense of fulfillment that eclipses anything I worked toward prior to my diagnosis.

2. Don’t Trash Your Bucket List

There is no hiding from Parkinson’s. As time moves forward, the disease progresses. It will inevitably become harder, or even impossible to do certain things exactly as you once did. The key is not to abandon what brings you joy, but to modify how you do it and discover new passions within your reach.

For me, that adaptation has taken many forms: taking up rock climbing and hand drumming; coordinating with dive crews to strap on my scuba gear in the water rather than risking a fall walking across a rolling deck; and competing in the US Open for Table Tennis in a division specifically established for athletes with Parkinson’s. You don’t have to give up living; you just have to adapt the playing field.

3. Embrace the “Gift” of Parkinson’s

There exists a perspective that only someone living inside a body with Parkinson’s can truly grasp. Others can empathize with your pain, discomfort, or cognitive impairment, and they may relate to an isolated symptom on any given day. But few outside our community have experienced the radical highs and lows that can hit within the exact same 12-hour period. We marvel at how such profound variability can exist in a single body, going from seeming entirely unaffected to being unable to take the few steps required to open a door for a visitor.

The “gift” hidden inside that volatility is an acute, unwavering strain of empathy. It lets you look at any stranger, without knowing a single detail about their life, and instinctively recognize they may be fighting a battle no one else can see. Moving through the world with that understanding lets you remain steady, patient, and able to comfort people dealing with quiet struggles they aren’t ready to speak aloud.

I wouldn’t wish Parkinson’s on my worst enemy. But since I have it, I’ll claim this gift, and I will gladly use it for my friends.

So when someone tells you, “Don’t let your disease define you,” take it with a grain of salt. Let it define your purpose. Let it define your grit. Let it define the depth of your compassion.