ASTROPHYSICIST Prof Stephen Hawking is probably the best-known person with motor neurone disease (known in the US as Lou Gehrig’s disease), but is perhaps not the best example of how the condition affects most people.
Diagnosed at 21 and given two years to live, he has kept on with the condition for half a century.
When Cindy McGhie’s father was diagnosed in 2007, doctors informed him that he probably had between 18 months and three years left to live.
“Dad was told to go home and get his affairs in order,” Cindy says. “We had a huge grieving process, which began then.”
Cindy has done the Walk to d’Feet Motor Neurone Disease and helped promote the event for the past five years, raising about $40,000 for MND NSW. But this year, she says, the five-kilometre walk on Sunday, March 24, will be harder than ever. Surviving twice as long as his original bleak prognosis, her father died six weeks ago.
“My dad was as tough as tough – he’d been a farmer all his life – and he was determined to fight,” she says. “We always knew it would happen, but I just think his fight was so brave and so long and when it finished it was like, ‘It’s all over now’. For me, it’s still really raw.”
Throughout the physical decline caused by the disease, Cindy’s mother cared for her father with the support of MND NSW.
“A lot of the money is directed towards care and support for sufferers and their families,” Cindy says. “I know with dad, he was actually able to stay at home the entire time, through aids that were delivered to the house free of charge – walking aids, then wheelchairs, then hoist devices for the bed.”
Some of the money raised by the walk also goes to fund research into treatments.
Justine Calvert’s father also died of MND, surviving just over two years after he was diagnosed in 2010. This Sunday will be her third time doing the Walk to d’Feet MND, and she also volunteers her time to help promote and run the event.
Like Cindy, the experience of her father’s rapid decline made her determined to raise awareness.
“You almost feel like standing on the rooftops and just screaming it out so everybody knows,” Justine says. “I really want people in the community to know about it and if people in Canberra can find it in their hearts to give what they can, any amount is helpful.”