'Pretty remarkable' man living with MND for 29 years after diagnosis

Queensland grandfather living with motor neurone disease for 29 years celebrates 90th birthday John Dinon has lived with motor neurone disease (MND) for almost a third of his life, making him one of the longest-surviving people with the progressive neurological condition in Australia. The Queensland grandfather celebrated his 90th birthday last month, a milestone he and his wife weren't expecting to reach. "He didn't think he would last that long. No, neither did I," Johanna Dinon said. The MND diagnosis 29 years ago came as a shock to the couple. Mr Dinon said he had asked the doctor, "What the hell is that?" He still remembers the exact day he received the news. "27th February 1997," he wrote on his whiteboard that he used for communication. He was 61 years old at the time. Given 2 to 5 years to live In Australia, every day two people are diagnosed with MND, and two people die from it. The life expectancy of someone diagnosed with the condition can vary between individuals and be influenced by the different types. After being diagnosed, Mr Dinon was told he had about two to five years to live. The first MND symptom they noticed was slurred speech two years earlier. "That's a really good story," Ms Dinon said. The couple had been staying at her sister's farm. "Her husband had died, and we went all over there to say goodbye … and John was talking slurred," she said. Ms Dinon suspected he had been drinking, but he had refuted that claim. Slurred speech is one of the early signs of the condition, along with weakness in the legs and hands. "Probably a couple of years … before we woke up to the fact that's what was wrong," Ms Dinon said. "I really thought that he'd been drinking." '100 per cent fatal' MND Queensland's director of care services Alicia Edwards said there were still many unknowns about the condition that she described as "the worst disease out there". "There is no real understanding of what causes MND in 90 per cent of cases," she said. "It's unfortunately 100 per cent fatal, and it's fatal within a very short time." Ms Edwards said on average people with the condition live up to 27 months after being diagnosed, but new research being led by MND Victoria showed it could be even shorter. She said Mr Dinon's story was "pretty remarkable" but said there wasn't any answer as to why he's been able to live with the MND for almost three decades. "I wish we knew. If we knew, we'd probably have bottled it and been giving it out," Ms Edwards said. More than 60 years together At the time of Mr Dinon's diagnosis, the couple had been travelling around country in a bus they had converted into a motorhome, but the trip ended following the news. "It was just a good time," Ms Dinon said. The pair had tied the knot in 1960. "Too long. Almost 66 years," she said. Mr Dinon was the local butcher in a small country town in South Australia. Ms Dinon used to visit his shop weekly. "Apart from John, there was a younger guy … he used to say this young guy 'Ask her out, ask her out'," she said. But he was said to be too shy. "This went on for probably six months or so … and [Mr Dinon] said 'If you don't ask her, I will'. "So, he did and here we are," she said. In 1976, the pair moved to Queensland with their two children. They both now live at the not-for-profit residential aged care centre, Sundale, on the Sunshine Coast and have been able to see their children and two grandchildren grow up. Residential postie Since moving into the centre about 17 years ago, Mr Dinon has become known as the local postie, delivering the mail to the other residents. His favourite part is meeting his neighbours, especially their dogs who come running to see Mr Dinon. Fellow resident Helen Macdonald said everybody at the centre was amazed by Mr Dinon. "He comes up first thing in the morning; I see him with parcels and then later in the day the same thing," she said. "It's so great we know we're going to get our parcels delivered as soon as they hit the village," she said. "Except in the rain, he doesn't come out in the rain," Ms Macdonald said. To mark his 90th birthday, Mr Dinon had a party with loved ones and staff from the aged care home. "The care centre did a beautiful party … they all got dressed up in funny clothes," Ms Dinon said. "They gave him a great 90th birthday." His most cherished part of the day was the photo with everyone. The grandfather's motto through life has been to "never give up", he wrote on his whiteboard.