Long conversations are also a “massive” task for Fiona, who describes talking as “constantly running uphill”.
“I miss chats on the phone,” she says. “When I swim in the ocean, I need two friends’ shoulders to support me.”
Like many people, Fiona used to think MND was incredibly rare, but she was wrong. The stark reality is that, in Australia, two people are diagnosed every day, and two die of the disease every day.
Disturbingly, over the past 30 years in Australia, the MND death toll has risen by 250 per cent. So far, nobody knows why. There is no effective treatment, no cure, and the average time from diagnosis to death is just 27 months.
“It’s a terrible disease,” says Fiona, who is sharing her story in support of Global MND Awareness Day on June 21.
“One of the issues with fundraising is that individuals who rally their friends and family often die quite quickly. When they are gone, so too is the urgency to donate.”
Falling into despair could be tempting, but Fiona is made of stronger stuff, having come from a hardy Queensland farming clan. There is no self pity and she doesn’t wonder, “Why me?” Instead, the warm, witty, single mum is focused on finding joy in the limited time she has left.
Fiona cherishes hanging out with her adult sons, builder Harry and bar/restaurant manager Rafe. She sees sisters Kylie and Jacki – of Hey Hey it’s Saturday! fame – as often as possible. A close-knit group of friends keeps her laughing, helps with medical appointments and takes her swimming in the ocean pool near her home in Sydney’s east.
Fiona travels when she can, still writes a little – mainly for the Henschke winemaking family – and also takes painting classes. But as she reluctantly admits, everything is tough.
"I’ve had to come to terms with using a walking stick, a walker and a wheelchair,” she shares.
“My speech is already failing. Accepting these things doesn’t come easily. It’s hideous relinquishing your own power, living with the crushing knowledge of further weaknesses to come.
“So now I understand and have joined the ranks of the MND warriors. I have a leopard-print cane and a walker with pneumatic tyres that can cross fields. I plaster a smile on my face going out and hurl open my front door thinking, ‘Damn you, MND!’”
Managing her illness is almost a full-time job.
“But there’s no perfection in my plan,” she says. “Sometimes chocolate or a glass of wine replaces the good intentions! If life is short, just enjoy the moments.
Fiona’s neurologist, Professor Dom Rowe, is currently working to fund a world-first trial testing a novel compound, developed in Australia, that hopes to address the inflammatory response implicated in MND.
“Telling my story is worthwhile if it raises awareness for more people to contribute to help fund the search for a cure,” she says. “It’s like fighting with a tiny band of soldiers against the overwhelming force of our neuron-killing enemy – knowing we’ll all die, but we’ll go down fighting anyway.”
