Parkinson’s disease: How people are fighting back through the debilitating condition

Whether it’s throwing a kick in a Muay Thai gym or painting watercolours in the early morning, Parkinson’s sufferers are tackling the disease head on with remarkable results.

When Ruth Tilbrook’s right hand wouldn’t stop shaking after a kickboxing session, she assumed it was just fatigue.

But what started as an isolated tremor soon spread.

“It shifted from just my right hand to my right arm and eventually my whole right side was affected,” the Seaford cafe owner, 63, recalls. “It even reached my mouth and lips.”

Eight years on, Tilbrook is living with Tremor Parkinson’s – a degenerative neurological condition that affects more than 200,000 Australians – but she’s not letting it define her.

“I told my doctor, ‘Nope, I haven’t got time for this shit,’” she says with a grin, recalling when her doctor revealed her diagnosis in 2017.

A mother of three and co-owner of Rubrents Cafe with husband Brenton, Tilbrook credits her active lifestyle – and her love of Muay Thai – for helping her stay physically and mentally strong.

“Even before I was diagnosed, I was exercising, drinking water and eating healthy,” she says.

“Since then I’ve just increased the intensity.”

Her specialist agrees.

“Other patients think having a cup of tea or walking to the letterbox is enough,” Tilbrook says. “But that’s not enough. I work hard to stay on top of it.”

Ruth Tilbrook has been doing Muay Thai at Boars Martial Arts to cope with Parkinson's. Picture: Keryn Stevens

That includes kickboxing multiple times a week, even if her trainers have had to adapt some activities as her motor skills and balance change.

“I’m very lucky that my medications work well, and I’ve kept things under control,” she says. “But I know that’s not the case for everyone.”

Even on tough days, she’s behind the counter with her daughter Shannon, who works alongside her.

“When my tremor is bad, I can’t carry drinks,” Tilbrook says. “But we adapt – that’s what this is all about.

“Sometimes I’ll be mid-shift making coffees, but I’ll duck away to take them because I know how important timing is.”

For those newly diagnosed or caring for someone with Parkinson’s, she offers simple advice.

“Get them out and about – go for a walk,” she says. “Be active, and remember, a diagnosis isn’t a death sentence.”

Like Tilbrook, Susie Nelson, 67, was also diagnosed with Parkinson’s eight years ago.

But where Tilbrook punches her way through the symptoms, Nelson finds calm with a paintbrush.

“I just picked one up and gave it a go,” the North Brighton retiree says. “I’ve never looked back.”

Susie Nelson uses painting to cope with Parkinson's. Picture: Russell Millard Photography

Once a Westpac bank employee and golf enthusiast, Nelson is now a prolific painter – especially during the quietest hours of the night.

“I do my best work at two in the morning,” she says. “It’s my escape.”

Nelson describes her symptoms as both frightening and frustrating.

“I became confused … my speech was slurred … it was almost like I’d form letters but not the words,” she says.

“There was a time I couldn’t talk, and my face had no motion. We thought I’d had a stroke.”

Now, she manages her symptoms with daily medication and the support of a neurologist and Parkinson’s disease nurse specialist.

But in December 2023, she was also diagnosed with dementia – a common and heartbreaking progression of the illness.

The dementia diagnosis, though expected, was a heavy blow.

“It confirmed what I had started to notice – my memory fading, my thoughts slipping away mid-sentence,” Nelson says. “But it was still hard to hear.”

Rather than retreat, she leaned on her creative escape.

“When I paint, I’m not thinking about what I’ve lost,” she says. “I’m just in the moment.”

She’s also grateful for the structured care offered at the Royal Adelaide Hospital.

“The Parkinson’s nurse specialists have made a world of difference,” she says.

“They help me manage not just medication, but how I live my life – how I sleep, how I eat, even how I plan my day. Everything slows down so much.

Tilbrook says she won’t let the condition define her. Picture: Keryn Stevens

“I can be walking and suddenly my legs turn to cement. I’m always in pain. But I don’t dwell on it. I’ve learned to cope.”

Painting has given her purpose and peace.

“It’s not stressful – it’s free-flowing. I love painting trees, reflections, abstracts,” she says.

“I even give them away to friends and family. I’ll look at one and think: how did I do that?”

She’s now working on a children’s picture book about the friendship of two turtles – focusing on the illustrations rather than the writing.

“Parkinson’s made me stop golf, but it gave me art,” she says. “I don’t want the illness, but in a way, it’s made me stronger and more understanding.”

Parkinson’s nurse specialist Bronwyn Daymond, from The Hospital Research Foundation Group, says both women are excellent examples of how different paths can still lead to strength.

“Parkinson’s is a neurological condition where the brain doesn’t produce enough dopamine – a chemical that controls movement, mood and cognition,” she explains.

While symptoms can vary greatly, the most common include tremors, muscle rigidity, slow movement and fatigue.

“Exercise and creativity are powerful tools,” Daymond says.

“They can help improve balance, co-ordination, mood and even cognitive function. Our brains have this amazing ability to rewire and grow when challenged – it’s called neuroplasticity.”

Whether it’s kickboxing or painting, these activities stimulate the brain to form new pathways, which can boost dopamine production and help manage symptoms.

Nelson says painting has given her a purpose. Picture: Russell Millard Photography

“They can also combat social isolation and improve mental health, which is just as important,” she says.

Daymond urges anyone newly diagnosed to build a team of experts – including neurologists, allied health professionals and Parkinson’s nurse specialists – to help navigate the changing nature of the condition.

“No two people experience Parkinson’s the same way,” she says.

“So it’s important to understand how it affects you specifically.”

She also recommends booking a free one-on-one consultation with a Parkinson’s nurse specialist to better understand medication and treatment options.

For both Tilbrook and Nelson, support has been crucial – from their families, communities and medical teams.

“I’m grateful that my mind is so strong,” Tilbrook says. “And I’m so lucky to have Brenton and our kids beside me.”

Nelson agrees.

“My three friends from golf – Lorraine, Belinda and Lyn – have been the best support anyone could ask for,” she says. “They still visit me and make me smile.”

Both women know there’s no cure for Parkinson’s.

But with routine, resilience and passion, they are reclaiming their lives.

“I’m not Tremor Parkinson’s,” Tilbrook says. “I live my life for me – not for my illness.”

And for Nelson, the fight continues – one brushstroke at a time.

“I can cope with anything,” she says.

“It’s how you choose to deal with it. Fight on and be positive.”

Need support or information about Parkinson’s?

Visit hospitalresearch.org.au for free resources and one-on-one help from trained specialists.