A cruel and incurable disease took former TV personality Fiona MacDonald's voice, and her trademark quick wit and banter with it. But she's not staying silent.
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.
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". So, they set off, two sisters in a city hatchback packed with a wheelchair and a tent for the nights in remote places, spreading a message Fiona has always lived by.The deep grief of losing her voice
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. "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 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.
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." "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."
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.