When I was 23 years old, I walked into a neurologist’s office looking for answers.

I walked out with Parkinson’s disease.

Those words changed everything.

I didn’t just grieve the diagnosis. I grieved the version of myself that existed before it. I grieved the future I thought I was going to have. I grieved the mother I wanted to be. Looking back now, I realize I was still just a young adult trying to figure out who I was and where I belonged in this world. Instead of dreaming about my future, I found myself mourning a life I hadn’t even had the chance to live yet.

For the next five years, grief became my constant companion. But somewhere along the way, something changed.

I stopped asking, “Why me?” and started asking, “What am I going to do with this?”

At the beginning of this year, I finally made peace with something I had fought for a long time. Because my Parkinson’s is genetic, there is nothing I could have done to prevent it. I inherited two mutations in the PRKN gene, one from each of my parents, neither of whom has Parkinson’s disease. Whether you believe in faith, fate, or something else entirely, I’ve come to believe this path became mine for a reason.

I can’t change my diagnosis. I can’t change my genetics. I can’t erase everything this disease has taken from me. But I can choose what I do with it. So I chose to use my voice.

Today, I advocate specifically for the young onset Parkinson’s community because our voices are too often missing from conversations about Parkinson’s research, treatment, and healthcare policy. Parkinson’s is still widely viewed as a disease that only affects older adults, but thousands of us are diagnosed decades earlier while we’re raising children, building careers, going to school, and trying to create a future. Our lives look different. Our challenges are different. Many of our treatment needs are different. Yet too often, we’re expected to fit into a healthcare system that wasn’t designed with younger patients in mind. I’m passionate about advocating for faster access to treatment, more research into young onset and genetic Parkinson’s disease, better access to fast acting medications, and a healthcare system that recognizes patients as partners instead of statistics. I believe the people living with this disease every single day deserve a seat at the table when decisions are being made about our future.

I don’t advocate because I think my voice is more important than anyone else’s. I advocate because I know there are people who are too overwhelmed, too exhausted, or too newly diagnosed to use theirs. If I can help carry even a small part of that weight, then everything I’ve been through has meaning.

In June of this year, my family experienced a heartbreaking loss when my older sister, Danielle, passed away. Losing her changed me in ways I’m still learning to understand. Grief has a way of reminding you how precious time really is. Danielle believed fiercely in people. She loved deeply, and she would have wanted me to keep going instead of giving up. Her memory has become another reason I refuse to stay silent. Every time I advocate, I carry a little piece of her with me. In many ways, she’s part of the reason I found the courage to turn my pain into purpose.

Living with Parkinson’s has taught me that strength doesn’t always look like standing tall. Sometimes strength looks like getting out of bed on the days your body doesn’t want to move. Sometimes it looks like showing up for your children even when your symptoms make that feel impossible. Sometimes it looks like asking for help. And sometimes it looks like refusing to accept that the next generation of patients should have to fight the same battles you did.

I don’t know what my future with Parkinson’s looks like. But I do know this. If sharing my story helps one person feel less alone… If it helps one newly diagnosed young adult believe that life is still worth living… If it helps one parent realize they aren’t the only one struggling… Or if it inspires one decision maker to create meaningful change… Then every word I’ve shared has been worth it.

I didn’t choose Parkinson’s. But I can choose what I do with it. And every day, I choose hope. I choose advocacy. I choose to keep fighting, not only for myself, but for every young person who will one day hear the same words I heard at 23 years old. Because my greatest hope is that when that day comes, they’ll be walking into a world that understands young onset Parkinson’s just a little bit better than the one I walked into.

Kelsey Enright
Young Onset Parkinson’s Advocate
New York