Jim Rogers. Photo: supplied
Diagnosed with early-onset Alzheimer’s disease, Jim Rogers is on a mission to help others.
With dementia now Australia’s leading cause of death, almost all of us are touched by it in some way. And with many nurses and carers juggling the ‘double whammy’ of personal experience alongside their professional exposure, it’s never been more important to break down the stigma of the disease and elevate the voices of those living with it.
Voices like that of Jim Rogers.
Jim was in his early 50s when things he’d previously had no issues with started becoming problematic. He was making mistakes at work, and forgetting important things and people he’d recently spoken with. Routine tasks were suddenly, inexplicably, impossible. He’d get lost in familiar locations.
‘I couldn’t understand what was going on with me,’ he tells ANMF.
His GP thought it was stress, or lack of sleep, or a side effect of his cholesterol medication. He stopped eating meat so he could come off the medication. Nothing changed.
One day, during a cardiology appointment, his phone kept ringing. ‘The cardiologist asked me to turn my phone off and it sounds ridiculous but I didn’t know how to,’ Jim says. ‘I just couldn’t work it out. I can’t even explain the humiliation.’
Jim’s cardiologist referred him to a memory clinic to investigate. They sent him for an MRI. He thought he might have a tumour.
Instead, the diagnosis was Alzheimer’s. He was 55.
‘It was the most awful experience. I was waiting for someone to give me a course of tablets or something. And even though she wrapped it up in a bow by saying “You have got an early diagnosis; this is a good thing”, it was horrific.’
The next few months were the worst, as Jim struggled to come to terms with his diagnosis. ‘For a while it was like digging my own grave,’ he says. ‘But eventually I turned it around. I realised I had the gift of an early diagnosis. I made major changes. I was fortunate enough to be in a position to stop working. I began a health regime: swimming, gym, eating clean – beetroot and nuts and spinach and all these things vital for the brain and blood vessels.’
A new life of opportunities
It may seem paradoxical, but Jim is now living a fuller life than he ever imagined. ‘I’m doing really well,’ he says. ‘And opportunities have kept dropping in my lap.’
Key in all this was Dementia Australia. They provided clear information, support, guidance and a sense of community. Eventually, because of Jim’s experience with public speaking, they asked him to become an advocate and he saw the chance to ‘switch this bad thing into something that could spread awareness, that could help people, that could give back a little.’
It started with some radio interviews, a few news articles. ‘And then they created the podcast’.
The podcast is Hold the Moment, which Jim co-hosts with journalist Hamish Macdonald – whose father died from Lewy body dementia. It has become a runaway success.
‘We did the first series,’ Jim says. ‘It was so well received. We did the second series. It went crazy. I think it’s been listened to by millions of people in a lot of countries. It’s been translated into several languages. It’s amazing.’
This all led to The Imperfects inviting Jim onto their podcast. It became one of their most popular episodes.
On the back of that the ABC contacted Jim, inviting him to share his journey on Australian Story. ‘Honestly, hand on my heart, I was unsure whether to do it,’ he says. But the opportunity it provided for raising awareness for Dementia Australia was too great to refuse.
And now, that opportunity has led to his most recent project: a book written with his daughter, scheduled for publication in Australia and New Zealand in September by Pan Macmillan, with the UK and US on the radar too.
‘It’s all quite mad,’ he laughs. ‘It’s like walking along the street and taking a wrong turn, and suddenly you’ve gone down this warren that is still expanding. It’s so crazy to me,’ he adds. ‘Who would have thought something so dire would open all these doors! I expected to be sat at home, all depressed and lonely, and instead my feet have not touched the ground, I feel so blessed.’
Using his platform for good
But while ‘all this starry, glittery stuff has made life really exciting’, it’s physically and mentally exhausting. ‘I’d give it all up just to get rid of this and never hear the word Alzheimer’s again,’ Jim says.
Obviously, that’s not going to happen, and while he’s devoting all his energy to his various projects, he continues to deal with his symptoms. ‘I forget stuff, I misplace stuff. I can’t handle multiple conversations with people. There’s a lot of sensory overload.’
He also still acutely feels the embarrassment and frustration that comes from not being his ‘normal self’.
‘It’s like somebody pinching bits from you,’ he says. ‘I’m very good at masking as much of it as possible – and you can come to terms with it, be positive, put a nice spin on it all, but it’s horrible. And you know the journey you’re going on: there’s only one exit from this road.’
Despite this, Jim is aware he’s in a privileged position, compared to many. ‘I’m very fortunate that my life’s full and busy, and I have my husband and children and close friends, who are all terrific supports. But I know for a lot of people, life with dementia becomes very lonely; a lot of people step away from them because they’re not sure what’s happening, or how to handle it. So I’m trying hard to help break down that stigma.’
That’s part of what the podcast is, and Australian Story and the book.
‘I’ve been given this voice now, I’ve got a platform. And while we can’t cure it yet, the absolute objective now is to get a cure – for people who come after me. So the more we talk about it, the more we fundraise for it, the more we focus on it, the more gets done about it.’
Jim Rogers. Photo: supplied
