Living Between Two Worlds: My Journey with Essential Tremor and My Work in the Parkinson’s Community

By Erika Ganong

For as long as I can remember, my hands have had a rhythm of their own. What many people might brush off as nervous energy or too much caffeine, I knew was something different. I was five years old when my dad first noticed the slight shake in my hand as I tried to write my name. By the time I was thirteen, I had my official diagnosis: essential tremor.

At thirteen, most kids are worried about fitting in at school or making the sports team. I was worried about holding a pen steady enough to finish a test, carrying a tray in the cafeteria without spilling, or keeping my hands from shaking when I had to speak in front of the class. Essential tremor is often misunderstood. It’s not “just shaky hands, shaky voice or a shaky head.” It’s a neurological condition that can make everyday tasks feel like climbing a mountain. But it also gave me something unexpected—resilience, empathy, and a deep understanding of what it means to live with an invisible struggle.

Growing Up with Tremor

My father, a longtime strength and conditioning coach, was my first advocate. He noticed the signs early, and we were fortunate to live in Louisville—a city with access to movement disorder specialists. That access was life-changing. Not everyone is so lucky. Many people have to drive hours to find a neurologist who specializes in movement disorders. For me, having a team of experts helped me feel less alone and gave me tools to navigate my diagnosis.

But essential tremor wasn’t just a medical challenge. It was emotional, social, and personal. I became acutely aware of how people perceived me—classmates who asked, “Why are you shaking?” or teachers who assumed I was nervous. For years, I tried to hide it. But the harder I tried to appear “normal,” the more I realized my tremor wasn’t going away. Eventually, I stopped apologizing for it. Instead, I began embracing it as part of who I am.

From Personal Challenge to Professional Calling

Living with a neurological condition shaped the trajectory of my life in ways I could never have imagined. While I wasn’t diagnosed with Parkinson’s disease, my journey with essential tremor gave me a window into the challenges faced by people living with Parkinson’s. I understood the frustration of having a body that doesn’t always cooperate, the constant negotiation between independence and vulnerability, and the courage it takes to show up every day.

That empathy became the foundation of my professional life. Today, I serve as Vice President and co-founder of the National Parkinson’s Institute (NPI), alongside my fiancé, Eric, who leads as President and CEO. Together, we’ve built an organization dedicated to supporting people living with Parkinson’s and their families—through exercise, education, research, and community connection.

What started as small gatherings has grown into a comprehensive network of programs: Rock Steady Boxing classes, Dance for PD, Pickleball leagues, Brain Games, workshops, educational seminars, and more. Each program is built on the belief that Parkinson’s isn’t just a medical diagnosis—it’s a community journey, one that requires hope, resources, and relationships.

Why Parkinson’s?

People sometimes ask me: Why dedicate so much of your life to the Parkinson’s community when your own diagnosis is different?

The truth is, Parkinson’s and essential tremor often intersect. They’re both movement disorders. They both impact independence. And they both come with stigma and misunderstanding. In fact, it’s not uncommon for essential tremor to be misdiagnosed as Parkinson’s and vice versa. That overlap gives me a sense of belonging in the Parkinson’s world—and a unique ability to connect.

But more than that, I see my work as an extension of my own journey. The empathy I developed through living with tremor fuels my passion to build programs that help others thrive. My own story gives me credibility when I tell someone, “I know how hard this is, but you are not alone.”

Building a Community of Strength

At NPI, I’ve seen firsthand how powerful the sense of community can be. I’ve watched someone walk into a Rock Steady Boxing class feeling defeated, only to leave an hour later sweaty, smiling, and full of hope. I’ve seen people who once felt isolated find deep friendships through support groups. I’ve witnessed caregivers exhale for the first time in months when they realize there are resources to help them, too.

We’re not just teaching exercises or hosting events—we’re building resilience. We’re reminding people that while Parkinson’s can change many things, it doesn’t erase joy, purpose, or possibility. And in a way, that’s what essential tremor has taught me too.

Lessons I’ve Carried

When I reflect on my personal and professional journey, a few lessons stand out:

Acceptance is a process, not a destination: It took me years to stop hiding my tremor. Some days I still struggle with it. But acceptance is about choosing to live fully, even when things aren’t perfect.

Community changes everything: Having access to specialists made a difference in my personal life, but it’s the community I’ve found through NPI that has been the most transformative. Shared experiences create belonging, and belonging creates hope.

Advocacy matters: Too many people still don’t understand movement disorders. Whether it’s pushing for more research funding, raising awareness about essential tremor, or expanding services for Parkinson’s, advocacy is how we change the future.

Purpose can be born from pain: My essential tremor was never something I asked for. But it shaped me into the leader I am today. It gave me a mission bigger than myself.

Looking Ahead

As I look toward the future, I see a path where my personal and professional worlds continue to intertwine. I want to keep building NPI into a national model of care and connection. I want to keep breaking down barriers between conditions like essential tremor and Parkinson’s, showing the ways our communities overlap and can support one another. And I want to keep telling my story—because stories are powerful tools for empathy, education, and change.

I may live with essential tremor, but it does not define me. What defines me is the resilience I’ve built, the community I’ve helped nurture, and the vision I hold for a world where no one feels alone in their diagnosis.

Living between two worlds—one personal, one professional—has been both challenging and beautiful. My essential tremor reminds me daily of the struggles faced by those with movement disorders. My work with the Parkinson’s community reminds me that none of us has to walk this path alone.

If there’s one message I hope people take away from my journey, it’s this: our challenges can become our calling. What once felt like a burden in my teenage years has now become the very thing that fuels my purpose. And for that, I am grateful.

Photo by Chris Denny/Adobe