After speaking to Andy McDowell on Wednesday, who has lived with Parkinson's since 2009, Afternoons received a huge amount of feedback.
Andy came into the Auckland studio to talk about his personal experience of the disease - what life is like - and to raise awareness and advocate for support for others with Parkinson's.
The New Zealand Brain Research Institute also got in touch and offered to tell us about their latest research into Parkinson's. Director Dr Michael MacAskill talks to Jesse Mulligan.
Andy yesterday said there was no real cure on the horizon and Dr MacAskill agrees that, while there is work being done around the world, it is still some distance away.
What his team is focused on is how to assess people with Parkinson’s disease.
“It’s very variable across people so, when the treatments come, we need to measure how affective they are and to identify the people who will be best suited to particular treatments. Our emphasis is very much on working with people with Parkinson’s… and following their journey through the disorder.”
The group began the study in 2007 and have been monitoring people with Parkinson’s along with some healthy older people to act as a comparison.
“We’ve had more than 400 people involved in the study and about 250 are still currently being followed up. By its nature, unfortunately, it’s a disease that occurs in the older end of life and people pass on, so we continue to recruit new people to come through.”
He says some people’s disease progresses very rapidly while others have a more benign course of Parkinson’s and they want to find out why it happens faster or slower for different people.
“Andy might be an example of that himself. It seems to be that people who have younger onset Parkinson’s it tends to be a bit more benign, it tends to progress a bit more slowly. For people that get it a bit older, it’s a much more rapid progression of symptoms and the reasons for that are a bit unclear.”
After 200 years of studying the disease, it’s still unclear what causes Parkinson’s but Dr MacAskill says there are some risk factors.
“People with Parkinson’s are much less likely to drink alcohol, smoke, or drink coffee, so they tend to be productive members of society who are less prone to some of the distractions we are.
“There are questions there about things like whether smoking might protect you from Parkinson’s or whether the disorder starts many decades before people get symptoms and therefore might predispose people against things like smoking and drinking.”
MacAskill says that’s obviously not a good reason to pick up smoking or drinking given they also have bad health outcomes.
“There is a real potential it might protect against Parkinson’s, but it’s certainly not something we would advocate. It does open up new avenues of research to find out what that mechanism might be and whether that could be applied as a treatment or a preventative factor.”
He says that while Parkinson’s might appear to be more common than it was before, people are also living longer which gives it more of a chance of presenting in people.
“People are living much longer in retirement which means they’re more likely to experience Parkinson’s and, once you’re diagnosed now, people live with it a lot longer.”