Darren Bidois (Ngāi Te Rangi) and his wife Leanne are trying to focus on the positives after Darren was diagnosed with Motor Neurone Disease.
Darren commissioned this Korowai (cloak) as an heirloom for his family and it arrived just the day before his 60th birthday, when this photo was taken. Photo: Supplied
Every year, the New Zealand Masters Games selects a charity to support. The 2024 Otago Community Trust New Zealand Masters Games’ charity partner is Motor Neurone Disease NZ, which is a charitable trust dedicated to making time count for people living with MND, and funding research and clinical trials for a future without MND.
Here, Tauranga man Darren Bidois shares his personal experiences of having MND and what the support of Motor Neurone Disease NZ has meant for him and his family.
When his shoulder first started acting up, Darren Bidois put it down to a pinched nerve or a rotator cuff injury.
He noticed his arm was becoming difficult to control when he was bowling or throwing a ball during a cricket match and decided he needed to get it checked out. In 2020, after several visits to doctors, physios, and specialists, the then 58-year-old father of three was given the news no one wants to hear: he had motor neurone disease (MND).
“Motor neurone disease is a horrible, terrible, nasty diagnosis to receive” says Darren. “The loss or ‘wasting away’ of all my arm, shoulder and hand muscles is the stage I’m at now. Then from there it will spread throughout the rest of my body and eventually take my life when I no longer have the muscles to breathe, chew, swallow, eat, hold my head up. Worst of all, my mind will remain as sharp as ever.”
Before MND, Darren was a keen athlete. He first started playing indoor cricket in the 1980s, only missing the odd season. He fell in love with the fast pace and competitive allure of the game, and eventually was selected for the NZ Over 45s team to compete in the World Cups 2008 and 2010, as well at the Central Region TriSeries in 2009. A series of family and work commitments, and a niggly Achille’s tendon injury put an end to his serious game but didn’t stop him playing socially for a couple more years.
Darren believes it’s important to stay positive in the face of MND and is grateful for the support of family and friends, without which his mental health would suffer immeasurably. They all, in some way, alleviate his anxiety about the future, and how it’s affecting those close to him, he says.
“I never say ‘why me?’. It is what it is. We live every day…and just get on with it. You can have your bad moments, but what about the good times with loved ones, friends and family? Feeling sad and angry too often is counterproductive, I reckon.”
“I don’t have a bucket list,” he says. “I feel I’ve lived a pretty amazing and full life. I’m happy with more time, time to be with my wife and family”.
Family, especially his wife Leanne, have been his greatest support. Darren describes Leanne as a “truly incredible and amazing person”, and counts himself lucky to have a tightly knit family, with all his children and grandchildren living nearby. Friends have also been around to offer support, whether it’s a visit, a chat and a coffee, or helping with jobs around the property.
“I still occasionally get out fishing thanks to a couple of my old fishing mates and occasionally my sons, either on my boat or theirs, although I am more of a passenger these days. But I bought an electric reel, which at least allows me to wind the fish in.”
Motor Neurone Disease NZ support advisors have also been on hand to provide support and information, connecting Darren and Leanne with various health professionals and additional support services.
“We are so thankful for all of these people who are there anytime to help and support us,” he says.
“They are all so caring and supportive, it’s awesome. We know we have to play the hand that we’re dealt in life, but without these people it would be so, so much harder.”
MND – The facts
- MND Motor neurone disease (MND) is a rare, aggressive and ultimately terminal neurological disease that progressively takes away a person’s ability to walk, talk, feed themselves, swallow, and ultimately breathe.
- There are around 400 people with MND at any given time across Aotearoa New Zealand, with three people diagnosed each week.
- The incidence rate in New Zealand is higher than the international average, although it is not known why.
- Currently there is no truly effective treatment and no cure, and the average life expectancy is between three to five years from diagnosis.
- MND NZ provides support and advocacy to people living with MND, their carers, families, whānau, and health professionals. Vitally, MND NZ also helps fund various New Zealand-based research.
New Zealand Masters Games participants can choose to make a donation to Motor Neurone Disease NZ when registering for the Games. Look out for further ways to support MND during the Games, coming soon.