Drew James’ Young Onset Story
Andrew (Drew) James is a fighter on many levels and his life experiences leave you asking how much adversity can be levelled at one person. But Drew is also a survivor and as he tells it, Parkinson’s gave him the strength to fight his other battles.
Content warning: this personal story contains mentions of abuse and childhood trauma and may be confronting for some readers.
Drew, who lives in central Victoria, shared his story at the Fight Parkinson’s Community Seminar in Castlemaine in April. He was just 48 and running his own business 7 days a week when diagnosed, seeing a local doctor after getting unsteady on his feet, a bit forgetful 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?’
“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.”
Drew said it was his first lesson on his Parkinson’s journey – that GPs are time poor and could not give the time he needed to answer all his questions.
“With Parkinson’s there are no straight answers, no one-size-fits-all, so I was left wondering what the next steps were. I didn’t get advised to go anything – in effect, looking back what I got from a doctor in diagnosis was less than the equivalent of a pamphlet which is frustrating.”
Instead, Drew turned to Fight Parkinson’s (then Parkinson’s Victoria), which he said he now recognised as “one of the best decisions that I’ve ever made” and it gave him the confidence to lobby for himself from the early stages of his Parkinson’s journey.
But more than that, as the realities of his past opened to him, his new-found confidence, extended to giving 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.
Drew, who also has epilepsy, grew up in a heavily polluted industrial town in South Australia, which he believes probably contributed to the onset of his Parkinson’s. He suffered physical and sexual abuse within the Anglican church.
“I got a lot of physical impacts to my head as a child,” Drew said. “I remember realising at age 10 or 11 why it was that my ears were surgically stitched back as a young child – and that was because of the impacts to my head.”
As part of his journey back into his childhood, Drew also discovered the people he believed to be family were not – he was part of the Stolen Generation and had Aboriginal heritage.
Speaking to Drew, it’s evident his experiences are intertwined – his confidence has grown, and he agrees he is psychologically stronger than ever.
“What I didn’t know was that there was much more to this journey and much more of the causes for what I now know is Parkinson’s, that likely contributed to it.
“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.
“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.”
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.
He has also had to fight for NDIS support, an experience he described as causing a lot of unnecessary pain, but which also taught him determination.
One of the problems Drew faced was that despite his age, local bureaucrats directed him into the aged care system which he then “battled” to get out of.
“Some Individuals thought it was OK 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.
“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.
Drew admits lobbying has become a bit of a passion and he advocates for other abuse survivors both in Victoria and interstate. He’s also doing activities he enjoys, including relearning 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.”
Anyone diagnosed with Parkinson’s before the age of 65 is eligible for support under the NDIS (National Disability Insurance Scheme). The NDIS is better placed than the Aged Care System to respond to some of the disability changes Parkinson’s might bring. Fight Parkinson’s encourages anyone diagnosed before this age to lodge an application, so they are in the system before turning 65.
If you would like more information about Parkinson’s and the NDIS, you can access the Community Learning Hub free course called “The NDIS and Parkinson’s: How to Apply” or contact our health information service on 1800 644 189.