How one man's life changed and how he keeps going. Video / Alex Cairns
On his 58th birthday, Tauranga father Darren Bidois received a “devastating” diagnosis of Motor Neurone Disease. He likens the fatal condition to being a “puppet on a string” where movement in his body is progressively cut off – “I’m pretty much a body in a chair now”. He shares his story in the hope that one day a cure can be found.
Three days before Christmas in 2020, Kelsie, Matt, and Morgan Bidois were waiting for their parents to come home so they could celebrate their father’s birthday with a pizza night.
Not wanting to ruin Christmas, Darren told his wife Leanne on the way home he didn’t want to tell their children about his Motor Neurone Disease (MND) diagnosis - a condition which has now left him “chair-bound”.
When Leanne walked in the door of their Tauranga home, the children “knew” something was wrong.
“I just had to tell them and it was horrific,” Leanne told the Bay of Plenty Times.
MND is a fatal, rapidly progressing neurodegenerative disease that attacks the nerves that control movement so muscles no longer work. There is no effective treatment and no known cure.
MND affects a person’s ability to speak, move and eventually breathe. The average life expectancy is three to five years after diagnosis.
Darren, 61, said he had symptoms for about a year before his diagnosis, mainly having trouble with his arms while playing sports.
The former New Zealand indoor cricket representative saw physiotherapists and was referred to a neurologist who diagnosed MND - a condition Darren understood well after knowing someone who suffered from it.
“When we got the news, it was pretty rugged really, because we knew, kind of what was coming.”
Tauranga father Darren Bidois was diagnosed on his 58th birthday with Motor Neurone Disease. Photo / Alex Cairns
Asked how the condition had progressed, Darren used the analogy of being “like a puppet on a string”.
“Then old man MND comes along with a pair of scissors and cuts a string to your arms and makes them hang. Eventually ... all those strings will slowly get cut.”
His arms were already “useless” and he could no longer do things he enjoyed such as drawing, fishing, or picking up his grandchildren.
“My whole life’s changed. I was a pretty active person before this happened and now, I’m pretty much chair-bound.
“I’m pretty much a body in a chair now, which is pretty devastating to be honest.”
“Without them, it would just be so hard. It would be devastating, actually.
“They’ve done such a good job and hopefully one day, it will help find a cure.”
Raising money for MND New Zealand
The family are participating in MND New Zealand’s fundraising initiatives, having a “cuppa tea for MND” and doing an ice bucket challenge on June 23 at Darren and Leanne’s home.
Georgia Bidois – Darren’s daughter-in-law – said they hoped to raise $5000 for MND New Zealand, which does not receive government funding.
She said four friends and family members would sit in an ice bath for one minute.
If they reached their fundraising goal, three of Darren’s grandsons would do a “mini” challenge, sitting in an ice bath for 30 seconds, she said.
A MND New Zealand press release said a recent study led by scientists at the University of Auckland Centre for Brain Research found that New Zealand had one of the highest rates of MND in the world, affecting more than 400 New Zealanders at any given time.
Most people diagnosed were older than 40, with the highest incidence occurring between 50 and 70.
Interim chief executive Mark Leggett said proceeds from its fundraising initiatives would go towards growing support, information and advocacy for those affected and supporting research for a future free from MND.
