Parkinson's affects about 12,000 New Zealanders and is the second most common neuro-degenerative disorder after Alzheimer's disease.
Andy McDowell, an advocate for support for people with Parkinson's, was diagnosed with the disease in 2009 and talks to Jesse Mulligan about how he is trying to raise awareness.
He says Parkinson’s is a “complicated beast” and says there’s a misconception that it simply makes old people shake.
“But it’s very different if you go by my experience. It can bite you from a younger age – one in ten of us have what’s called young-onset Parkinson’s.”
He explains that it affects not only the motor systems, but the ability to think, talk, go to the bathroom and more. “It’s a monster really,” he says.
McDowell was just 44 and had a successful career in marketing when he was diagnosed with Parkinson’s and says it’s becoming harder and harder to do things.
“I feel sharp in my mind, but the ability to communicate is getting more difficult. I find myself sitting on the outside of conversations. The thinking is OK, but I am noticing some missing things.”
He has three daughters and says his wife, who also works full-time, does all the hard yards bringing them up.
While there are some treatments, such as deep brain stimulation, to alleviate symptoms, there’s no cure or “light on the horizon” for the disease, he says.
His advice to young people like him who receive a diagnoses is that, after you get over the shock, to keep calm and carry on.
“I know that sounds a bit trite and British stiff upper lip while the bombs are exploding all around you but, in the end, it’s not going to kill you immediately. You’ve got a huge amount of things you can still do.”
He, for instance, had a good ten years where he was able to travel and walked the Machu Picchu trail in Peru.
“It is what it is. Fast or slow, it’s about living in the present and that’s what matters. If you look to the past, you’ll grieve what you lost and if you look to the future, you’re paralysed.
“It’s degenerative, it doesn’t get any better. You have to sit with that and enjoy the pleasures that life brings you.”
McDowell says Parkinson’s New Zealand does a great job but there’s not enough funding for them to be able to provide good support for everybody and he urges people to donate.
“I’d like people to understand that it does affect people who are younger and it does affect their families a great deal. Parkinson’s and Alzheimer’s are similar in their effect on the family. It’s like watching someone atrophy in front of your eyes.”