My PD Story

My Parkinson’s story is told from the perspective of a caregiver — and, in a sense, from two of them. 

I help care for my father, Stephen Levin, who was diagnosed with Parkinson’s disease (PD) more than 10 years ago and, more recently, with dementia. At the same time, I support my mother, Judy Levin, who is his primary caregiver. In other words, I am both a caregiver and a “caregiver to the caregiver.” That distinction matters, because the people we so easily overlook are often the caregivers themselves — frequently long-standing spouses — who quietly need and deserve support of their own.

My father’s condition had been declining gradually, with mild dementia emerging around 2023. But nothing prepared us for the sudden sea change in early 2025, triggered by a viral illness we later learned can wreak havoc on people with PD. Almost overnight, our lives were thrown into a tailspin: hospitalization, a stay in a rehabilitation facility, and ultimately full-time in-home caregivers, along with two separate moves to accommodate his needs. 

We were unprepared and uneducated about what to expect, forced to move quickly and make weighty decisions with imperfect information.

As much as this care was about improving my father’s quality of life, it was equally about my mother — her mental well-being, her sense of balance, and her access to support groups and community. We managed through sheer grit, relentless networking, and the pooled time and love of a close-knit family and an extended circle of friends.

The stress on a caregiver is real and deep, and the physical and mental toll cannot be underestimated. 

Caregivers absorb a flood of information — some of it conflicting — while consulting doctors and specialists, taking on responsibilities a partner once handled (including bills, household finances and more), welcoming new people into their lives, and often juggling jobs and other family obligations at the same time. This is exactly where more resources, and more recognition, are so badly needed.

This cause is personal. There is a history of neurological conditions on my father’s side of the family, including both Parkinson’s and various forms of dementia, and several friends and their loved ones are walking this same road. I believe deeply in medical research — and just as deeply in the power of daily movement and a healthy lifestyle to help prevent or blunt the onset of neurological disease.

That belief led my friends Jen and Rocky Pontikes and me to create the Million Meter Challenge, a month-long rowing event we completed as Parkinson’s Campions, with the Parkinson’s Foundation. The event was about teamwork, movement and showing up — and together we raised awareness and funds for Parkinson’s. 

My hope is simple: to support the research and education that may one day cure or ease these brutal diseases, and to ensure that caregivers are never left without the information, resources  and support they need on their own journey.

Jordan is a recipient of the Parkinson’s Foundation Top Fundraisers Award. Learn how you can become a Parkinson’s Champion today.