The Ministry of Health isn’t tracking how many New Zealanders are living with Parkinson’s disease, despite it being the fastest growing neurological condition in the world.
The estimated 13,000 Kiwis live with Parkinson’s, a number that has increased by about 40% in the past decade, according to neuroscientist Toni Pitcher.
“We’ve developed a method whereby we can estimate the number of people with Parkinson’s… based on the medication used,” she told 1News.
Health NZ told 1News it doesn’t collate the data as there isn’t a definitive test for Parkinson’s.
GPs and neurologists diagnose the condition and don’t report what they say is “nationally consistent data”.
“It’s disappointing from our point of view because that’s something we’re interested in but it’s also not surprising,” Pitcher said.
“It would be nice if we could get to a point where we could get those numbers readily available.”
Parkinson’s is caused by insufficient dopamine in the brain, and while it’s not known what triggers its development, symptoms can be managed with treatment, medication and exercise.
Charity Parkinson’s New Zealand said keeping people with Parkinson’s in work for longer is a main priority, as the average age of diagnosis is now 59.
“The only way that Parkinson’s is going to get the real support that it needs is for the Ministry to have a clear understanding of the burden of the disease on the New Zealand public,” chief executive Andrew Bell told 1News.
“It’s vitally important that we have the funding to keep people with Parkinson’s active and involved and mobile in their communities.”
Bay of Plenty man David Monk was diagnosed 20 years ago, and on Parkinson’s Awareness Week is working to bring attention to the disease.
“It can be frustrating and depressing because I can’t do what I used to do… everyone is different, it’s not a linear task and to me, to try and keep positive,” he said.
“Family really have to wrap around you because that’s where your strength is.”
The 78-year-old organised the annual Red Tulip Walk For Parkinson’s in Mount Maunganui, just one of the many events around the country.
Additionally, landmarks around New Zealand and the rest of the world will be lighting up blue today to mark World Parkinson’s Day.
