Parkinson’s disease (PD) entered my life long before my own diagnosis. Not too many years ago, I walked the caregiving journey alongside my mother as she lived with Parkinson’s and eventually passed away from its complications. Watching someone you love face the progression of this disease is heartbreaking, and it gave me a deep respect for both the strength of people living with Parkinson’s and the quiet resilience of caregivers.
Because of that experience, when I was diagnosed with Parkinson’s myself, it felt surreal. Suddenly I was no longer just the caregiver. I was the patient.
Like many people newly diagnosed, I had to face the uncertainty that comes with Parkinson’s. Some days I function very well, but there is always the question in the background: what will the future look like? Learning to live with that uncertainty has been one of the biggest challenges.
Another realization was that Parkinson’s is about far more than tremors or movement. Many symptoms are invisible — fatigue, anxiety, brain fog, sleep disruption, constipation and stress sensitivity. These symptoms can affect daily life in ways that others may not see or fully understand.
What has helped me most is focusing on the things I can control. Staying active, managing stress, prioritizing healthy habits, and leaning on supportive relationships have all played an important role in how I live with Parkinson’s today.
I’m incredibly grateful for a loving and supportive husband and family who walk alongside me on this journey.
One unexpected gift of this diagnosis has been the opportunity to connect with others in the Parkinson’s community. I began sharing my experiences online to bring awareness to both the visible and invisible aspects of Parkinson’s. What I discovered is that many people living with Parkinson’s — and their caregivers — simply want to feel seen, heard and understood.
Those conversations have become deeply meaningful to me. If sharing my story helps even one person feel less alone, better informed, or more hopeful, then something good is coming from this difficult diagnosis.
Participating in research has also become important to me. I enrolled in PD GENEration, the Parkinson’s Foundation genetic study. The process was extremely straightforward — easy, painless and honestly very impressive in how they carried out the entire experience.
Participating made me feel seen and valued, and I felt honored to contribute to research that may help others in the future. I was also relieved to learn that I do not carry a known genetic component to pass on to my children.
This was my first time participating in a Parkinson’s research study, but it won’t be my last. I’m very open to participating in future studies whenever possible. I also shared my genetic results with my family.
What keeps me hopeful is the resilience of the Parkinson’s community and the progress being made in research and treatment. Organizations like the Parkinson’s Foundation play an essential role by providing trusted education, resources, and advocacy that empower people living with Parkinson’s and their families.
If I could give advice to someone newly diagnosed, it would be this: take a deep breath. Parkinson’s looks different for everyone, and many people live well for decades. Stay active, build a strong care team, and stay connected to others who understand the journey.
Parkinson’s has changed parts of my life, but it has also deepened my sense of purpose. Today, I try to use my voice to raise awareness, encourage others living with Parkinson’s, and remind people that even in the face of uncertainty, there is still life to be lived, community to be found, and hope to hold onto.
Explore ways to get involved with Parkinson’s research today. Visit our Join A Study page and learn more about PD GENEration, the Parkinson’s Foundation genetics study that offers genetic testing and counseling at no cost to participants.
