Carline Welfare can't walk, she can't swallow and she can't talk, yet her infectious laugh speaks volumes.
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The 74-year-old grandmother uses her big smile and her magnetic writing board to share her wit and good humour in the face of a disease that is slowly destroying her.
"I'm lucky, seven years," writes Mrs Welfare, pointing out that most people with motor neurone disease don't last much longer than 18 months.
She knows her nerve cells controlling her muscles that enable her to move, even breathe, will continue to degenerate and die.
"Soon I won't be able to write," she jots down.
"Life is hard but still OK. I'm stoic. Adapt to each change as it comes."
I laugh a lot. I have to laugh or give up.
And the woman knows some horrid changes are on the way.
"At first it was just mouth area, her tongue, jaw, swallowing, she lost her voice," explains her husband Mike.
"It came on fairly quickly, within a few months."
Mrs Welfare required feeding through a tube in her stomach and couldn't talk any more, but the couple carried on with life - senses of humour intact.
They're amused each time they order Mrs Welfare's food supply for the tube feed.
"They ask me what flavour she would prefer," Mr Welfare says to his wife's giggle.
"I laugh a lot," she writes. "I have to laugh or give up."
Mr Welfare says his wife "laughed before she was sick but she laughs a lot more now".
"Why complain what you can't change," she writes.
Despite the diagnosis in 2007, the Wollongong couple continued to travel abroad.
"We carried on, at that stage this was a handicap, but we carried on a sort of normal life," Mr Welfare said.
"Then three years ago we went to New Zealand and she started sensing weakness in the left side and that was the start of it spreading to the rest of the body."
Recently there have been more signs the disease is taking hold.
"The worst of it now is she's lost even more independence, she can only go in a wheelchair taxi," Mr Welfare said.
"Carline said something very poignant when we couldn't get in and out of the car; we tried a few times. She said 'that means we can't go to any more art galleries'."
Mr Welfare is in awe of his wife's fighting spirit and together they will tackle each new challenge.
"She inspires everybody, the way she's handling the problem."
Mrs Welfare's face lights up as she draws a "love heart" and writes: "I couldn't do it without Mike."
"Loss of mobility equals loss of independence. I want people to know what MND is," she writes. "All MND people are different. We are all cheerful."
Illawarra residents who have embraced the ice bucket challenge are being urged to make sure their donations stay in Australia.
‘‘The support from the Australian community has been incredible,’’ said MND Australia’s executive officer of research Janet Nash.
‘‘MND Australia strongly encourages people to keep their MND Ice Bucket Challenge donations in Australia so they can claim a tax deduction while supporting home-grown ingenuity,’’ she said.
Since the first Australian was doused with ice-cold water, MND Australia has received more than $1.6million in donations from more than 30,000 supporters.
Donations are being directed to the organisation’s research arm, the MND Research Institute of Australia, and towards care and support for people with the disease.
‘‘This massive injection of funds for research marks a turning point that we hope will expedite research breakthroughs with the ultimate aim of realising a world without MND,’’ Ms Nash said.
The institute allocates funds to research with the greatest chance of increasing understanding of motor neurone disease and finding an effective treatment and cure.
Wollongong researcher Justin Yerbury has applied for a slice of the latest round of funding.
Dr Yerbury lost his mother Pauline, sister Sarah, and other relatives to the disease and has dedicated his career to looking for answers.
His team, which works with researchers in Melbourne and Canada, made a key discovery that could one day help stop the spread of the incurable neuromuscular condition throughout the body.
‘‘We are interested in understanding how the genetic mutations that cause motor neurone disease actually cause motor neurones to die,’’ said Dr Yerbury, from the Illawarra Health and Medical Research Institute.
‘‘Motor neurone are the type of neurone that controls our movement. We think that the way it works has to do with the accumulation of junk protein in these cells in particular.’’
Dr Yerbury said government funding wasn’t enough and MND Australia’s support was critical.
Motor neurone disease is a terminal neurological disease that kills two Australians each day. ALS is the American term for MND.
For most people, the early symptoms – slurring of words, difficulty holding objects or stumbling – rapidly escalate to an unstoppable wave of paralysis that robs them of their ability to move, eat, swallow and finally breathe.
The only treatment available slows down the disease process by about three months.
To make a donation: www.mndaust.asn.au/donate.
To donate direct to Dr Yerbury at the University of Wollongong, visit www.youruowcommunity. edu.au/givenow and then select motor neurone disease in the drop down menu.
To find out more about MND research in Australia: www.mndresearch.asn.au.
