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Shock diagnosis: My body is slowly dying

An incurable disease won't hold her back
Claire Reilly

Claire Reilly was a Kiwi doctor living the good life, with her promising career off to a flying start at a major hospital in Australia. Then one day, the 32-year-old tripped over. The next day, she had trouble doing up a button. Then, while brushing her teeth, she noticed a muscle in her hand had wasted away. She knew something was very wrong.

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With her extensive medical knowledge, Claire formulated a list of potential explanations. Motor neuron disease (MND) was at the bottom of possible diagnoses, but it was the one she feared the most. At medical school in Otago, she and her fellow students agreed it was a disease that they wouldn’t wish on their worst enemies.

“That’s because it’s like slowly watching your body die,” Claire explains. “You’re still the same person you’ve always been, but now you’re locked in a body that won’t listen.”

Tragically, however, Claire did have MND and the harrowing diagnosis changed her life forever. There is no effective treatment and no cure, and the average life expectancy for sufferers is just

27 months after diagnosis.

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But eight years later, Claire, now 42, is still going and, as she shares her remarkable story with Woman’s Day, she considers herself lucky.

Life was good

Having grown up on the West Coast, the former outdoors-woman has fond memories of summers spent by the pool and riding her horse on the beach. A love of helping people and a passion for science drew her to study medicine at the University of Otago, where she made life- long friends before moving to Melbourne.

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“I had found my niche and life was good,” recalls Claire, “but I was devastated by the diagnosis. It was a profound sense of loss – for a career, children and the life experiences I would never have. There were a lot of tears, but I knew I just had to get on with this and make the most of each day.”

She moved back to New Zealand to be with her family in Geraldine, Canterbury, and within six short months, she was in a wheelchair. MND causes the degeneration of the body’s nerve cells, which control the muscles that enable us to move, speak, breathe and swallow. Claire can no longer walk, run, hug or hold and her speech is slurred. There may also come a time when she will have to be fed by a tube into her stomach.

“I need help with every single activity including showering, turning in bed, eating and going to the toilet,” says Claire. “I have to have a machine at night to help me breathe. I can’t swat a fly away, scratch my head or blow my nose. These are little things that other people take for granted.

“I am not telling you this out of pity – I have been quite lucky. I have lived a lot longer than expected and had a lot of support. I have been luckier than most in that my disease has progressed at a slower rate, so I wanted to take that opportunity and raise as much awareness as I can, while I can.”

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Progress has been made in MND research since the “Ice Bucket Challenge” went viral last year, with millions of people – including Claire – raising money by dousing themselves in freezing water.

Claire taking on the Ice Bucket Challenge

“Many very famous faces have taken the challenge and Ellen DeGeneres has been a particularly passionate supporter,” says Claire. “I am pretty resigned to my fate, but while the research we fund won’t help me, it might help you, your children or their children.”

This year, Claire came up with the idea of making the annual Walk 2 D’Feet MND charity event a nationwide thing, to raise more money for research that may one day help find a cure for this horrific disease, which kills six New Zealanders every week.

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The family fun day will be held on Sunday, September 20 in Auckland, Hamilton, Tauranga, Wellington, Christchurch and Dunedin, with celebrities like John Campbell, Te Radar and Sir Richard Hadlee involved.

Claire will complete the course in her wheelchair. It will be a challenge, she says, but Claire is looking forward to the event and remaining positive, as she has tried to be since being diagnosed.

“As someone once said, the question was never, ‘Why me?’ The correct question is, ‘Why not me?’ I still get a lot of enjoyment out of life. I keep up with current affairs and like watching cricket. Music always lifts my spirits and I even have a shandy every night. I am still the same person that I always was.”

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