Christchurch man petitions for motor neurone disease to be notifiable after wife's diagnosis

A Christchurch man is petitioning for motor neurone disease to become a notifiable disease.

Paul Barton's wife Ally was diagnosed with the debilitating disease when she was 34. He says making it notifiable could eventually lead to a cure.

Paul 'Barto' Barton gently lowers the ramp and then heads straight to his wife, who is waiting patiently in her wheelchair.

He strokes her hair, then prepares to back her out of the van and into their monthly gathering in Christchurch.

It's a meeting he never thought they'd have to attend. It's for people with motor neurone disease (MND).

"This illness is brutal," Paul told Newshub. "I wouldn't wish it on my worst enemy, never mind the most important person in my life."

Ally Barton, once an active hiker and gym goer, was diagnosed with MND at just 34, one of the youngest with the condition in New Zealand. 

Her body is shutting down, the disease will ultimately claim her life.

"Motor neurone disease changes everything," said Paul.

"My wife is a nurse, an ICU nurse, she would save lives... and now she's now taught me to be a nurse, it's never something I thought I would be doing."

Her first symptom was a tingling in her right ring finger, which then spread. But it took two years for a diagnosis.

"Suddenly she was really struggling to walk and talk, and they got an ASAP appointment with the neuro the next day. And he unfortunately diagnosed motor neurone disease. I think she handled it better than me, I was a wreck to be honest. "

He struggled with the fact there's no cure. And a lack of information.

And that prompted Paul to petition for MND to become a "notifiable disease", which would mean every case would have to be reported to government authorities. 

"They are missing out on so much data. It's just needle in a haystack otherwise. You can't narrow down links between cases. You might have somebody in Dunedin with it, and then somebody in Christchurch with it, but you can't correlate why. "

He said if it was notifiable, the information could be used to inform a public health response and medical research.

"The only way they are going to find answers and understand this illness is to make it notifiable."

A similar petition was created in Australia by MND patient Peter Riley.

"You end up with an active brain in a dormant shell," Riley told Australian media in 2022.

He collected nearly 30,000 signatures before his death last year, but no Government action has been taken yet. 

Paul Barton aims to hand his own petition to the New Zealand Government next month. To make it simple, he says people can just scan a QR code.

"We need to act now please; we need to make it notifiable, let's be an example to the world so that we can change things."

We asked the Health Minister about the likelihood of MND becoming a notifiable disease.

"I would have to say at first blush it's not likely," said Dr Shane Reti.

He said that's because MND isn't an infectious disease.

New Zealand has one of the highest incidence rates of MND in the world with higher rates in occupations including the farming industry. From diagnosis to death, it is on average about two years.

Ally has lasted five years. And like many other MND patients in New Zealand, no one in her family has ever had the disease.

Her diagnosis was out of the blue. 

But she takes strength and solace from monthly meetings with other patients, their time to share an experience they never thought they'd have to.

Christchurch man petitions for motor neurone disease to be notifiable after wife's diagnosis