Parkinson’s is often associated with older adults, but symptoms can appear much earlier in life. Early onset Parkinson’s—diagnosed before age 50—represents an estimated 5-20% of cases in Canada. Juvenile Parkinson’s is a rarer form of Parkinson’s affecting people under the age of 21.

Accessing a timely diagnosis and age-appropriate support can be much more complicated for younger people, especially when most programs and services are designed for older adults.

For these families, diagnosis can take years, and access to specialized care often means travelling far from home. When programs and services are designed for adults, younger people living with Parkinson’s are often left searching for the answers and support they urgently need.

Our family’s story  

Before Parkinson’s entered our lives, I was a busy Mom raising two inseparable boys. I work for the City of Saskatchewan in disability services, and for many years, I thought my job had prepared me to support people as they navigate the system, but being Joey’s mom has taught me far more than any job ever could.

Joey has always been bright, curious, and determined. He loves cooking and is a devoted WWE fan. Thanks to Make-A-Wish, he travelled to Washington D.C to see John Cena’s retirement match—a moment that cemented “never give up” as his motto.

When his symptoms began 

Joey’s symptoms appeared when he was five years old. He suddenly couldn’t hold a pencil to write his name and began falling on the playground. Tremors followed, and his voice became soft and strained.

Joey’s symptoms appeared when he was five years old.

No one imagined that it could be Parkinson’s. MRIs revealed changes but no answers, until testing finally confirmed genetic Parkinson’s and dystonia when he was eight.

Travelling for the care he needed

We have a Parkinson’s specialist in Saskatoon, but the expertise Joey needed was in Toronto. Each trip meant travel costs and time away from work. We received some support, but the financial strain is significant—I work two jobs to keep us afloat.

Schooling through uncertainty 

By the time Joey was diagnosed, he had missed nearly a year of school. Grade three was dominated by appointments and exhaustion, so we moved him to a school where he could start fresh. Today, he’s on track to graduate with his classmates.

His school has embraced him, and he has worked with the same exceptional learning assistant since grade nine.

Deep Brain Stimulation and renewed hope 

Joey was the first person under 18 to receive Deep Brain Stimulation (DBS) for Parkinson’s at SickKids.

Before surgery, even simple tasks were exhausting. Since then, the change has been remarkable—his voice is stronger; he cooks, and he talks about university as a real possibility. Our home feels full of hope.

Our home feels full of hope.

Care without limits

Joey continues to dream and push forward with determination. As his mom, I’ll keep advocating for better access to care and greater awareness of early‑onset and juvenile Parkinson’s.

This story is shared thanks to the courage and dedication of Julie Johnson. 

The right care for everyone 

Joey’s story reminds us that Parkinson’s isn’t just an older person’s condition. Although rare, it can affect young people and even children. Families often face long travel times, few local specialists, and services built for adults rather than children. Limitless Parkinson’s care means making sure young people receive the right care at the right time, with access to specialists, therapies, and advanced treatments close to home—not determined by a postal code. The right care. The right time. For everyone.

Learn how Parkinson Canada is closing care gaps for people living with Parkinson’s.  Visit www.parkinson.ca/PAM