PROFESSOR DOM ROWE (OR82) STEPS UP FIGHT FOR MND CURE
Thursday, October 19
Former children's TV host Fiona MacDonald's road trip of a lifetime for MND research
Australian Story / By Leisa Scott and Janine Cohen
To drive around Australia in 40 days in a small hatchback is an ambitious plan. To do it when your body is failing, each day revealing another change, a new crushing limitation, is close to heroic.
But nothing was going to stop Fiona MacDonald from giving it a go. Not even her sister Jacki MacDonald's protestations.
"I said, 'No, no, no, no, no, you can't do it," recalls Jacki, the former co-host with Daryl Somers in the long- running variety program, Hey Hey It's Saturday. "It's too far. You got any idea how far it is?'"
Fiona did. At least 15,000km to cover all states and territories, minus Tasmania. She wasn't fazed.
A far greater challenge had already been laid before her. In November 2021, Fiona, also a former television personality on shows such as the madcap 1980s family game show It's a Knockout and the popular children's program Wombat, was diagnosed with motor neurone disease (MND).
The cruel disease took her voice first. No longer can Fiona deliver her trademark witty one-liners, the quick- fire banter that made her a natural on television. Her mobility is faltering, too.
MND is, Fiona tells Australian Story via the computerised voice she now uses to communicate, "stealing the power of all muscles inch by inch until you can't walk, can't hold hands, can't talk, swallow or breathe. Then you die. There is no treatment, no cure".
The now 66-year-old was devastated by the diagnosis of this disease that kills off nerves known as motor neurons, leading to the wasting of muscles that control almost everything we do.
She wanted to hide from the world. But once the shock wore off, says her neurologist, Professor Dominic Rowe: "She put her armour back on, pulled herself together and with a bit of a f*** you approach, said, 'This is what I'm going to do'."
She hatched her plan, enlisting the help of her younger sister, Kylie Thynne. They would drive around Australia, raising money to support Professor Rowe's research into MND on what they'd call It's a Big Lap, a subtle harking back to It's a Knockout.
Also part of the plan: to have a lot of fun and laughs — and hug a lot of trees — along the way.
The MacDonald family was built on fun. It was the glue, says Jacki, that kept them going through tough times growing up on a large cattle property in Blackall, outback Queensland.
"We had gorgeous parents who were always funny, laughing ... scrambling over bad bits with a sense of fun," Jacki says.
When their house burned down, twice, their parents made a positive out of it, exciting the kids with a trip to town to buy new clothes.
She knows that positivity rubbed off on Fiona, who became well-known for her big smile and big laugh during the silly antics on It's a Knockout at the same time Jacki was on Hey Hey. "Fiona is extroverted and quick-witted and great fun," Jacki says. "People have been drawn to her because of her enthusiasm and her joie de vivre."
Fiona admits to a deep grief at the loss of her speech. It upsets her, she tells Professor Rowe during a consultation, when people think she's stupid when she tries to speak. Most people with MND retain their cognitive ability – but many can't verbalise their thoughts.
Fiona, who studied journalism and became a wine writer after leaving television, writes eloquently about her anguish. "Talking is so much a part of being human," she says. "The live patter, the intense discussion, the passionate argument, a quick witty aside, jokes that make you cry with laughter. All gone, just whispers in the dust."
As they struck out for the dusty roads of Australia, Kylie became Fiona's interpreter, the bond between them obvious in the care Kylie takes to get Fiona's words right. And, Kylie jokes, in typical MacDonald style, now she gets to deliver her sister's clever quips. There's been a lot of laughter, says Kylie. A lot of seizing the moment. They've pulled over on deserted roads to hug trees, many times. They've played music, loud. They've had a dip in the water at Broome's Cable Beach. They've shooed away emus trying to get into their car.
"It's given her a connection to the earth," Kylie says, "and that's what she really wanted."
Fiona was adamant It's a Big Lap had to be in Australia, not Europe, as Kylie suggested. "She wanted to feel connected and have amazing experiences and see the stars, walk on the grass and have these crazy emus try to get in our car," Kylie says. "It's been a full adventure."
Fiona knows she has a finite amount of time. On average, people live 27 months after diagnosis. Fiona will have been diagnosed for two years next month.
"The clock is definitely ticking ... it's a fact," Kylie says. "This trip is not for a cure for Fiona because it's too far in her journey with the disease," she says, although, she'd welcome a miracle. "It's about using [the fact that] people know who she is to raise money. Hopefully, that money will go to finding a cure for other people who do get this terrible diagnosis."
One of the worst parts of Dominic Rowe's job in a field that has more than its share of heartache is that he can't tell most of his patients why they have MND.
Genetics account for about 10 per cent of cases, the rest are believed to be caused by as-yet-unproven environmental factors.
What he does know is that the number of deaths from MND in Australia is increasing, more than doubling in the past 30 years. In 2020, 747 Australians died from MND.
He knows, too, that it's a cruel disease and believes it's his job to give his patients the unvarnished truth. "The most critical element is to be honest. And compassionate. And sometimes profane. Because it is a f***ed disease," he says. "Don't pretty it up ... and don't pretend it's something else."
Fiona calls him a legend, a man of kindness and warmth. "I don't know how he does it," she says, "knowing his best efforts won't save any of us at the moment. One by one, we will all die."
Every three months, Fiona visits Professor Rowe's clinic at Macquarie University and she sees him and a clinical nurse, respiratory physician, speech therapist and dietician to give her the best possible quality of life. Professor Rowe says the clinic relies on philanthropic funding.
She's also taken part in a world-first trial of a therapy being developed by Professor Rowe, aimed at slowing MND's progression. The next phase of the trial will cost $2 million. Fiona's fundraising will go towards Macquarie University's MND research and patient care.
Professor Rowe considers it part of his job to push for more research to find out what is causing "this wretched disease". There are theories, including exposure to heavy metals, pesticides, herbicides and other chemicals.
Another leading suspect is blue-green algae. Professor Rowe "strongly suspects" changes in our water environment are linked to MND.
Professor Rodgers and scientists around the world believe a toxin found in blue-green algae — beta-N- methylamino-L-alanine, or BMAA — has the capacity to damage the body's nerves and could trigger MND.
"The algal toxin BMAA can actually kill off motor neurons in experimental studies and we're trying to understand if that is contributing to human MND."
The need to prove or disprove the theory is urgent, Professor Rodgers says. Algal blooms are increasing and will increase further as global temperatures rise.
One area of interest is the Riverina, in south-west NSW, a big agricultural zone where the incidence of MND is about five times the national average, according to Professor Rowe's data dating back 13 years.
There are no official figures because MND is not a notifiable disease, a formal process through which governments must be informed of a disease's occurrence. If it was made so, Professor Rowe says, researchers would have much better information on where people with MND live, a strong lead for investigating environmental factors.
Rocky Pirrotinna is a citrus grower in Leeton, in the Riverina. Rocky has MND. He first noticed trouble with his grip. He was misdiagnosed with carpal tunnel, but a specialist noticed twitching in his arm and sent him for more tests.
Soon after, he was sitting in front of Professor Rowe. "Lovely man," Rocky says. "I actually walked out of there very happy, considering I've got this shitty disease. That's the sort of bloke Dom Rowe is."
But he can still share a joke. Down by the channel where Rocky extracts water from the Murrumbidgee River for his crops, Professor Rowe tells Rocky he'd give his eye teeth to prevent MND.
Rocky smiles. "I'd give what I got left," he says. "There's still a few good moving parts."
What's needed, says Professor Rowe, is more research, more money. "This is not incurable," he says. "It's underfunded."
Researchers are trying to determine whether blue-green algae in river systems could be contributing to MND cases.
Fiona has always loved to swim, loves the ocean. She used to swim the length of Bondi Beach, revelling in powering her body through the water. So when Harry joined his mum and aunt in WA to help drive some of the way, a dip in the waters off famous Cable Beach was a must. But risky. Fiona's mouth no longer closes properly, putting her in danger of taking in too much water and choking. But, says Harry, on that clear, sunny day on that wide expanse of beach, "it felt like nothing else mattered. You could just see that it meant so much to her".
Arm in arm, the trio walked down to the water's edge. Fiona in the middle, supported by the ones she loves. Fiona beamed at Harry as the waves hit her feet. Then, she got down on her knees, playfully splashed some water onto her son, and plunged in. For a few glorious seconds.
She's home in Sydney now, It's a Big Lap completed at 15,520km, a monumental feat that has so far raised $87,000 for MND research, with hopes of hitting $100,000. It was exhausting but exhilarating. A challenge met.
There are greater ones to come. Fiona knows that, but she is living by a credo: to get up every day, to keep going. "Allow the emotions to wash over you," she says. "But don't let them drown you."
Watch Australian Story's The Big Lap with Fiona MacDonald on ABC iview.