My PD Story

My mom was diagnosed with early-onset Parkinson’s disease (EOPD) in 2016, when I was just 28 years old. It was a massive shock, as she had always been independent, active and relatively healthy. What I didn’t realize was that she had been quietly battling cognitive and physical challenges for years on her own.

From the moment she was officially diagnosed, our entire world shifted. I had so much to learn to be able to support her and I felt totally unprepared. Parkinson’s didn’t just affect her body, it changed our daily routines, our relationship, roles within our family, and the way we thought about the future. But through it all we have always remained a team.

Nearly 10 years later, I’ve watched my mom face increasing fatigue, worsening tremors, cognitive hurdles, changes in her strength and mobility, and numerous surgeries to manage pain for other health issues. She has handled every challenge with courage and grace, continues to inspire me and everyone around her.

There is no handbook that prepares you to become a medical care partner for your parent at a young age. My transition from adult child to playing a lead role in her treatment plan was swift but necessary. And yet with every surgery, doctor’s appointment, change in medication and post-op recovery period, I discovered a resilience within myself that I didn’t know existed.

As her care partner, I’ve learned what unconditional love truly means. I anticipate needs before they’re spoken, attend appointments, communicate with doctors and understand the treatment plans to help my mom maintain her quality of life. I provide physical care, comedic relief and emotional support through both good and bad days.

Caregiving has also taught me what vulnerability really looks like. That it’s okay to ask for help, lean on my support network, and honor my own needs.

Our journey has been unconventional as a mother, daughter pair, but through medical team at Rush University Medical Center, a Parkinson’s Foundation Center of Excellence, and the Parkinson’s Foundation, we’ve found community. We enjoy participating in support programs for people living with Parkinson’s and their care partners, which is a consistent reminder that we are not alone.

My mom’s involvement in research advocacy and speaking engagements keeps her informed in the latest news and research. We also attend local conferences and events when possible, giving us both a renewed sense of purpose. In September 2023, we were proud to be part of the first graduating class of Black and African American research advocates to support ongoing efforts to raise awareness and encourage participation in PD research studies for our community.

Parkinson’s is more than a diagnosis. It is a shared experience that reshapes families, deepens bonds and expands your perspective on life.

My mom is my best friend, and I am incredibly proud of how far she has come mentally, emotionally and physically. She fights every day with determination, but I hope she knows she will never have to fight alone.

To my fellow care partners, please be kind to yourself. Ask for help. Take time to care for yourself and to refill your cup when needed. What you do requires dedication, patience and empathy, but it makes a profound difference in the life of your loved one. Cherish the moments. Laugh, cry, make memories and celebrate every win.

The Parkinson’s Foundation is here for care partners. Explore care partner resources.