Drew’s Parkinson’s diagnosis didn’t hold him back, it opened doors
Content warning: this story contains mentions of the Stolen Generations, and physical and sexual abuse that may be confronting for some readers.
Drew has faced many battles in his life.
The proud Narungga man from South Australia is a survivor of both the Stolen Generations and childhood abuse. He’s also lived with epilepsy from a young age.
But Drew says living with Parkinson’s is the toughest battle he’s had to face.
“My entire life has been redesigned to accommodate my worsening condition,” he said.
“Every day I worry about losing my independence. I worry about cognitive decline and losing my ability to communicate. And I worry about being left behind.”
A truly life-changing Parkinson’s diagnosis
Drew is a fighter. His life experiences leave you questioning how much adversity one man must face. But Drew is also a survivor and as he tells it, Parkinson’s gave him the strength to fight new battles.
Drew was 48 and running his own business when he was diagnosed with Parkinson’s by a local doctor after becoming forgetful, unsteady on his feet and having problems writing.
“I did what I now know as the cogwheel test and he said to me, ‘you’ve got early onset Parkinson’s, did you know?’,” Drew said.
“I told him no, we had a bit of a chat, and I left his room and thought, what do I do now? Where do I go? What do I do?
I felt I was in no-man’s land. I had a bit of information and immediately thought the worst of it.”
It was his first lesson on his Parkinson’s journey – that GPs are time poor and the more questions Drew got answers to, the more questions he had.
“With Parkinson's there are no straight answers, no one-size-fits-all, so I was left wondering what the next steps were.,” he said.
Drew turned to Fight Parkinson’s to find the answers he was after, noting it as “one of the best decisions that I've ever made”.
How Drew’s Parkinson’s diagnosis helped him find his voice
Drew suffered physical and sexual abuse as a child and grew up managing epilepsy. His industrial hometown in South Australia was heavily polluted and Drew believes these combining factors contributed to the onset of his Parkinson’s.
“I got a lot of physical impacts to my head as a child,” Drew said.
In reflecting on his childhood, Drew discovered he was a Narungga man, part of the Stolen Generations.
Through speaking with the Fight Parkinson’s team Drew built the confidence to lobby for himself from the early stages of his Parkinson’s journey.
He carried this confidence into other areas of his life.
As he began to confront and accept the realties of his past, Drew took his self confidence to give evidence at two Royal Commissions - one into institutional responses to child sexual abuse and the other, into violence, abuse, neglect and exploitation of people with disability.
“I certainly I didn't know at the point of diagnosis that years later there was going to be an opportunity thrown into my lap to give evidence at the two royal commissions and speak up for what had occurred all those years ago,” Drew said.
“I know the only person who knows me in terms of Parkinson's and everything else in life is me. It taught me that as much as I spend a lot of time now proudly advocating for other people, I have become my own best advocate and that is the best thing that you can do in your journey with Parkinson's.”
No question is off limits in diagnosis and in life
Part of that was learning that “no question is too difficult for an answer to be had”.
Drew recalled one of his first conversations with the Fight Parkinson’s health team, about how his body would change, when he realised no question was too embarrassing to ask.
“With Parkinson’s, there are no straight answers,” Drew said.
“No one-size-fits-all. Victor treated me as an individual, with my own unique needs, concerns and wishes.”
When a Fight Parkinson’s team member didn’t have the answers to Drew’s questions, they were able to draw on the expertise of Fight Parkinson’s team of physio, occupational, speech and language therapists. And if they still didn’t have the information Drew was looking for, they helped him navigate the health system to get what he needed.
Getting the Parkinson’s support that’s right for him
Drew has also had to fight for NDIS support, an experience he described as causing a lot of unnecessary pain.
One of the problems Drew faced was that despite his age, local bureaucrats directed him into the aged care system.
“Some individuals thought it was okay to put me in the aged care system 12 years early, telling me I’d be better off in aged care but I didn't feel it was appropriate to me and wasn't going to give into people who thought that they knew what was best for me,” Drew said.
“So I sat through a number of meetings and lobbied my local MPs. Thankfully they listened and I was able to become a participant in the NDIS.
“That was one of the best things ever in terms of the supports that are now in place for me. Although it meant I had to accept there are a lot of things that I can't do myself anymore as my body has changed, including becoming wheelchair user, a scary realisation but as it's turned out, utilising a wheelchair - and a bit of speed - has been a whole lot of fun,” he said laughing.
Lobbying has become a passion and Drew continues to advocate for other abuse survivors both in Victoria and interstate. He’s also doing activities he enjoys, including re-learning the piano and re-training as a bass baritone, which he said also helps him swallow food.
“Far be it for me to tell anybody what to do but don't give in, don't give up. Be proud of Parkinson's. As I've learned, I've met some beautiful people along the way, and there are so many more to meet.”
Support is available for those who may be distressed.
- Phone Lifeline: 13 11 14
- Beyondblue: 1300 224 636
- 13YARN: 13 92 76
- National Disability Abuse and Neglect Hotline: 1800 880 052
Drew’s diagnosis didn’t take away his passion, because of Fight Parkinson’s support he can continue to fight for what matters to him. Don’t let anyone fight Parkinson’s alone. Make a tax-deductible donation to Fight Parkinson’s today to fund Parkinson’s support that changes lives.