Resilience, Creativity & Uncertainty: Putting Young Onset Parkinson’s Disease in Focus

Monday, 16th February 2026

While completing research about living with Young Onset Parkinson’s Disease (YOPD), Lewis Johnstone found that the future was a place of extreme uncertainty for many of the research participants. Many people living with YOPD reported feeling a lack of clarity about what was to come, with the progression of their disease unclear. Their diagnosis at a younger age also disrupted and changed the nature of many expected life trajectories, such as career, parenting, relationships and ageing.

This finding inspired Lewis to complete his PhD project, which focused on how people live with YOPD and imagine their futures. The project asked people how they navigate a condition that is often so unexpected at a younger age, and how this shapes their everyday experiences and future planning. As part of this project, Lewis asked participants living with YOPD to capture snapshots of their day-to-day, and found the photographs to be deeply moving, offering important insights into their experiences. Now, these photographs are being displayed for the first time in an exhibition available to the public at the Box Hill Community Arts Centre, from 10-30 March.

We spoke with Lewis all about the people behind this exhibition, and the power of sharing personal perspectives to create greater understanding of individual experiences.

What were some of the key insights you uncovered in this project?

I met people from different parts of Australia who all had different experiences and expectations of YOPD.

One of the biggest things people talked about was how “out of sync” they felt with others, especially partners and family. Parkinson’s is usually seen as something that affects older people, so being diagnosed in your 30s, 40s or 50s can feel very unexpected. Many people were still working, raising children or planning for the future when they were diagnosed, and suddenly they had to rethink those plans. It could feel like their body was ageing faster than the rest of their life and the lives of those close to them.

Despite this, people showed a lot of resilience and creativity. They found new ways to manage their symptoms, adjusted their routines, and rethought what a good and meaningful life looked like. Rather than everything stopping, life continued—it just required more planning, flexibility and support.

Overall, the research shows that living with Parkinson’s isn’t just about managing physical symptoms. It affects work, family life, identity and future plans. Listening to people’s experiences helps us better understand what support younger people with Parkinson’s need, both medically and socially.

: “Just stare and go with the flow. There can be rough spots and smooth spots. And then it just keeps going.”

: “This is supposed to represent the metaphor of body and machine. Everything is clunky and I don’t have that flowing kind of movement.”

How did the photos taken by participants make you feel?

I feel incredibly grateful that people shared private moments and gave insights into their lives that otherwise couldn’t be experienced by sitting down with them for an hour at a time.

Many of them captured ordinary, everyday moments—kitchens, medication routines, workspaces, family life—but knowing what they represented gave them a lot of emotional weight.

They showed how Parkinson’s sits quietly within daily life rather than only appearing in clinical or dramatic ways.

Overall, I felt a strong sense of responsibility in working with the images. Participants were sharing very personal perspectives, and the photographs helped me understand their experiences in ways that words alone sometimes couldn’t. They invited empathy and reflection, and they reinforced the importance of representing people’s lives with care and respect.

: “Sometimes it gets me down taking medication. When the alarm goes off, I’ll kind of groan. But it’s become part of the routine.”

: “My whole life is centred around exercise…it’s just like a weight has been taken off. The shell has cracked open and you can move a lot more.”

What inspired you to turn this into an exhibition?

I asked participants what they would like to be done with these photographs and they suggested a public exhibition where family, friends and members of the community could get an insight into the ‘everydayness’ of YOPD.

I think the participants really wanted to communicate that Parkinson’s isn’t just an older person’s disease. It affects younger people whose challenges are different and require different support responses.

I’ve held the photos back from previous publications and writings. So, this will be the first time they are displayed in a public setting like this.

Why do you believe Parkinson’s research is so important?

Parkinson’s research is important because it helps us better understand and support the growing number of people living with the condition. Not just medically, but socially and emotionally as well.

Research into people’s lived experiences helps us understand what daily life with Parkinson’s is actually like. For example, how it affects work, family life, mental health and future planning. This is especially important for younger people with Parkinson’s, who are often juggling careers, parenting and financial responsibilities while managing a long-term illness. Their needs can look quite different from those diagnosed later in life, and research helps make those differences visible so services and support can be better tailored.

You can find out more about the exhibition here, which is free to attend and opening to the public on 10 March. Throughout the exhibition, Lewis will be raising funds for Shake It Up Australia, with 100% of donations going directly to Australian Parkinson’s research aimed at a better understanding of Parkinson’s disease, accelerating treatments, and ultimately, a cure.