When Keri Balding was told that her younger sister Jennifer had been diagnosed with sporadic motor neurone disease (MND) in May last year, she dropped everything, including her work, and raced back from Europe to Sydney to care for her.
She can still recall word-for-word the text message Jennifer sent her: “Thank you for coming home. I’m OK at the moment, but I don’t know what’s going to happen.”
“She signed it off, your baby sister. It just actually brought me to tears,” Balding said.
“Every day, we had a different normal. What people don’t realise is how much responsibility family members take on for this.”
Jennifer died by voluntary assisted dying on June 2, a little over a year after her diagnosis. She wanted to be able to give her full consent to doctors before the disease fully stripped her of the ability to nod and speak.
Because of the rapid progression of MND, patients can lose control over core motor functions such as speech in a matter of months. But Jennifer’s deterioration happened much faster than her, or her family, had expected.
“Jen lived on her own terms, and she was going to die on her own terms … She wanted to make sure that she could still have the capacity to give her consent, of course, because the disease, you know, it’s a flesh prison – you’re inside your own body, and you’re trapped in there.”
In a world-first, doctors in NSW will be required to report diagnoses of MND to a state-based registry in a change that will be instrumental in helping researchers understand what causes the incurable condition.
Experts say the statewide registry is a major step forward in the fight against the rare and progressive disease that the late AFL great Neale Daniher described as “The Beast”.
The same condition forced the retirement of former South Sydney Rabbitohs player Jai Arrow in May. Arrow backed the decision by the NSW government this week, and called on other states to follow suit.
While Australia has a national MND registry, it operates on a voluntary basis and therefore cannot be used to collect reliable data on the disease.
Health Minister Ryan Park told NSW parliament on Wednesday that the registry – which will record information such as where patients live, and their occupations – will help to paint a clearer picture of MND and whether it is caused by genetics or the environment.
Calls to investigate whether environmental factors contribute to MND have intensified since reports of “clusters” of the disease occurring in areas near outbreaks of blue-green algae. Towns with a higher exposure to certain agricultural chemicals also experience a disproportionate incidence of the disease.
Communities near Lake Illawarra and along the NSW Riverina have recorded rates of MND at near seven times the national incidence.
Macquarie University head of neurology Professor Dominic Rowe has spent decades doing MND fieldwork in rural and regional NSW communities.
He said that while researchers still know “remarkably little” about what causes the condition, they strongly suspect sporadic MND is caused by a combination of environmental triggers.
“Sporadic motor neurone disease is an environmental disease,” Rowe said.
According to MND Australia, the vast majority of motor neurone disease – near 90 per cent – is sporadic, meaning it develops without a family history of the condition.
“We must understand the cause of this disease, and the only way to do that is to systematically identify who has the disease, and then with meticulous research, to understand the cause of this disease,” he said.
Rowe has been lobbying the government to make MND a notifiable condition for years, and said the change was extraordinary.
“This [change] will enable systematic research into the environmental cause of motor neurone disease. If we don’t understand the cause, we can’t understand the mechanism. If we don’t understand the mechanism, we can’t slow and stop the disease.
“This year in Australia, 800 people will be killed by motor neurone disease. That’s two-thirds of the national road toll. When someone dies on the roads, that fatality is studied to the nth degree, and we need to apply the same assiduous research into MND.”
Balding welcomed the decision by the NSW government to make MND a notifiable condition.
“It’s a step in the right direction to finding a cure. If you can find the cause, you can find the cure.
“We are traumatised by this,” she said. “It’s a traumatic experience.”
Jennifer leaves behind two children – 30-year-old Sophie, a lawyer, and 26-year-old Tim, an actor. The family will hold an end-of-life ceremony in July.
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