Call for Māori with Parkinson's to help researchers work out best future treatments for whānau

For years, Parkinson's disease looked like the one health statistic where Māori were best, not worst.

Māori appeared to develop the debilitating brain condition at just half the rate of Pākehā. But worrying new research is bad news for Māori and researchers want help from whānau to find out what to do next.

Ngāi Tahu's Johnny Boyle, 55, is a proud dad and westie. Most Thursday mornings, you'll find him in a counterpunch boxing class at Unruly Gym in west Auckland. But he and his fellow classmates aren't just exercising their muscles, they're working on their brains - they all have Parkinson's disease.

Parkinson's is an incurable degenerative brain disease. Patients often have tremors or shakes in their hands or legs. They may have difficulty walking, thinking or speaking - symptoms that get worse over time.

Boyle was diagnosed at the age of 49. 

"It's a challenge. It's with you all the time. It's on your mind and how to react to it, deal with it, fight it." 

In the five and a half years since his diagnosis, the man, whose counterpunch classmates call him Johnny Rockstar, has thrown himself into every possible Parkinson's-related course, research or gathering.

But in that time, he's yet to meet another Māori with the disease.

"Not one." 

Statistics are sketchy, but an estimated 12,000 people in Aotearoa live with Parkinson's. For every 10,000 Māori, 114 have Parkinson's. For Pākehā that figure is 223.

And because it's the fastest-growing neurological disease or condition in the world, that number is set to explode.

"We estimate that figure will double in New Zealand in the next decade or decade and a half," said Parkinson's NZ chief executive Andrew Bell. 

But now new research is pointing to strong reasons why whānau Māori need to become familiar - earlier - with the symptoms of Parkinson's.

"For many years it was felt that maybe Māori had been advantaged for once in terms of the health statistics," Bell said. "But unfortunately, we don't think that's the case anymore. There's very, very recent research by the University of Auckland into something that's called the PINK1 gene.

"And unfortunately, this discovery could mean that Māori have got a predisposition to early onset Parkinson's, as is the case for some Pasifika people, principally Samoan and Tongan. So this is a very, very new discovery which would be quite distressing for Māori and Pacific communities."

Although Parkinson's is not considered a genetic disease, there is a genetic component. 

Researchers are now looking at whether the PINK1 gene could mean that Māori and Pasifika are significantly more at risk of developing the disease as early as their 30s and 40s. Early-onset Parkinson's is any occurrence of the disease here in someone under 65 years old.

Bell said the cliche of someone with Parkinson's is "an old white guy bent over a stick". But increasingly, the face of Parkinson's could be much younger Māori or Pasifika. 

A diagnosis of early-onset Parkinson's brings challenges not faced by older patients.

"When you're diagnosed in your 30s, let's say, I mean, not only is it a shock that you've got this degenerative neurological disease that is going to shorten your lifespan, but you've got responsibilities around children, around family, around your career. So do you tell your boss? There's a challenge for you."

Right now, there are no studies into Parkinson's and Māori, but with a $500,000 grant from the Michael J Fox Foundation, a team of Otago University researchers are planning to fill that research gap.

Ngāi Tahu's Katrina Pōtiki Bryant is Associate Dean Māori with the School of Physiotherapy and a kaupapa Māori researcher. She's part of the Otago team looking for 30 Māori and 30 Pasifika with Parkinson's disease to be interviewed for their study.

"We're hoping to engage Māori to collect their voice so they can let us know how to best provide services for Māori." 

If you want to know more about the study, click here.

Johnny Boyle has already volunteered.

Made with support from Te Māngai Pāho and the Public Interest Journalism Fund.