Story

Racing against time: Gil and Tony's story

Published: 10 December 2025

Before motor neurone disease entered their lives, Gill and Tony Lewis shared a love of racing.

They each owned cars built for competition and spent weekends on the track taking part in time trials. It was a shared passion that shaped their marriage, the planning, the travel, the gentle rivalry.

Away from racing, life was full: family, grandchildren, and the simple pleasure of keeping busy. Tony was always on the move, often walking tens of thousands of steps a day.

The change came quickly. What began as small signs of weakness became a steep decline.

Within months, Tony’s strength and balance were gone, and the man who once thrived on movement now spends much of his time resting with his BiPAP breathing machine.

"It's like living in a parallel universe,” Gill says. “You’re watching life happen around you and just trying to manage the best way you can.”

Gill works hard to keep that balance. She spends time reading MND research and following the connections between lived experience and care. She also quilts.

“I quilt to keep myself sane," she says. The half-finished designs on her wall are evidence of the next project and her way of staying grounded, something she can still control.

“People who are miserable all the time don’t survive,” she adds. “Black humour keeps us going.”

What frustrates her most is the system. “My Aged Care works at a glacial pace," she says.

"If I request a pressure-area cushion, I can wait two or three months, and pressure areas don’t wait for approval. I can’t go and buy something without approval from my aged-care provider.”

Even simple requests are rejected. “Protein supplements get knocked back because they’re not on the care plan,” she says. “I get incensed to the point that I’ve been emailing and copying in my local MP."

What frustrates Gill most is the system’s inability to keep pace with the disease. “MND moves quickly, but everything around it moves slowly,” she says. "There's no sense of urgency, no understanding that everyday matters."

For Gill, caring for Tony is a mix of love, persistence, and constant advocacy. The cars are still part of their story, reminders of a time when speed and freedom defined their days.

Now, life moves more slowly, measured in small victories: a good night’s sleep, a day without pain, a quiet moment together.

"You just keep going," she says. "You find the small things that make it bearable."

Read more stories about life with MND and the research to develop new treatments in the latest edition of Momentum.