June 24, 2026

Why I Started Shaky Wheels Rally

In November 2022, at 40 years old, I was diagnosed with Young Onset Parkinson’s. I did not know what the road ahead would look like—but I knew I was not ready to stop travelling it.

The diagnosis

A life-changing diagnosis brings a lot with it: questions, uncertainty, frustration and days when the future feels difficult to picture. Parkinson’s was never something I imagined would become part of my life, especially at 40.

For a while, it felt as though the diagnosis was trying to define me. But beneath all the uncertainty, the things that made me feel like myself were still there.

I still loved adventure. I still loved cars. I still loved road trips, meeting people, solving problems and taking on a challenge.

Most importantly, I still wanted to make a difference.

The idea behind Shaky Wheels

That is where Shaky Wheels Rally began. It grew from a simple idea: use the things I love to start conversations about Parkinson’s.

This was never about setting speed records or building the perfect vehicle. It was about getting out on the road, meeting people and showing that life does not stop after diagnosis. The route might change. Some days might demand more patience or planning. But Parkinson’s does not get to decide where the journey ends.

Young Onset Parkinson’s is often misunderstood. Too many people still see Parkinson’s as something that only affects older people. Those living with it at a younger age can be raising families, working, planning their futures and dealing with symptoms that other people may never see.

Shaky Wheels gives that reality a name, a vehicle and a reason for people to ask questions.

Why the road matters

In 2026, Shaky Wheels headed west to the Mundi Mundi Bash. The trip put the camping setup, the vehicle and me through a genuine outback test. It also proved the idea worked: every stop, every photograph and every conversation became another opportunity to raise awareness.

The challenge is part of the point. Parkinson’s can make ordinary tasks less predictable. A long drive, a wet campsite or a difficult day may require a different pace—but adapting is not the same as giving up.

Bigger than one rally

Shaky Wheels is bigger than me. It is for my family, who support me every day. It is for people living with Parkinson’s, and for anyone newly diagnosed who is wondering what comes next. It is also for the researchers working towards better treatments and, ultimately, a cure.

I still do not know exactly what the road ahead looks like. None of us do. What I know is that I want to keep moving, keep talking and keep turning this journey into something useful.

Thank you for being part of it.

Let’s raise awareness. Let’s support research. And let’s prove that Parkinson’s does not get to decide where the road ends.

— Paul Cohen
Founder, Shaky Wheels Rally