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Locked in a body that doesn't work

While studying medicine at the University of Otago, Claire Reilly and her peers discussed which disease was the worst with which to be diagnosed.

Then in 2006, while she was working as a medical administrator at Alfred Hospital in Melbourne, Dr Reilly began tripping up and having difficulty with buttons.

She was referred to a neurologist, who diagnosed motor neurone disease (MND).

“Going through medical school, we all agreed this was the one disease none of us wanted to get. Not the least because there is no effective treatment and no cure.”

Within three months, Reilly had to leave her job. She was fatigued and couldn’t walk properly, so she moved home to Geraldine to be close to her family.

“It’s rapid, very debilitating and leaves you locked in a body that just doesn’t work.”

She was told she would have 2-3 years to live. Despite this, she feels lucky. She was diagnosed quickly, and is still fighting eight years after her initial prognosis.

Some people die from the disease less than a year after diagnosis.

“It’s an insidious disease and it works silently.”

Reilly now cannot walk or hold things. The disease has affected her speech and ability to swallow. She relies on a motorised wheelchair for transport and has a fulltime carer.

But she still gets enjoyment from life.

“I keep up with current affairs, like watching cricket, and I can’t cope without my coffee in the morning. I even have a shandy every night.”

Despite her prognosis, she remains positive and dedicated to raising awareness of the disease in the community.

Since she was diagnosed, the number of people suffering from MND has risen from one in every 100,000 people to two in every 100,000.

She is looking forward to taking part in the Walk 2 d’feet Motor Neurone Disease, which is being held for the first time in Christchurch at Hagley Park on October 12.

Christchurch Mayor Lianne Dalziel and Port Hills MP Ruth Dyson would be participating and Reilly said everyone was welcome, dogs included.

Canterbury/West Coast co-ordinator Heather Brunton said the event was a great opportunity to raise awareness and money for those affected in the region.

“The really exciting thing is that we have patients coming. It is a big ask for people with this disease.”

The 3.5km Walk 2 d’feet Motor Neurone Disease is on Sunday, October 12, at 10.30am in Hagley Park, Christchurch. To register, visit

_Samantha Gee for The Press