By Vicki Milliken
No one ever knows what life has in store for them. Certainly, Williamstown resident Michael Murray didn’t expect Parkinson’s disease during a routine visit to his GP fourteen years ago. ‘Shocked’ and ‘deflated’ is how Michael remembers his reaction to the news. He adds, ‘and it’s certainly been a hell of a ride since.’
Michael is one of 38 people diagnosed with Parkinson’s disease every day in Australia – it’s thought to affect over 150,000 nationally. It is a degenerative condition that results from damage to the cells that produce dopamine, a chemical vital for the smooth control of muscles and movement. The condition is incurable. And if that seems blunt, so too is the news from the World Health Organisation that the prevalence of Parkinson’s has doubled in the past 25 years and ‘globally, death and disability from Parkinson’s is increasing faster than for any other neurological disorder.’
But even that doesn’t paint the picture of the years spent navigating a steady decline in physical capability and the often-unseen side effects from the cognitive and non-motor symptoms and medications. As someone who has always been extremely independent and very active, Michael, aged 74, confirms the ‘continued deterioration [and] having to give things up,’ is the hardest part of his journey so far. Hard too for wife Lynn, ‘watching the person he was, disappearing.’
In the early years, medication kept things in check. After his diagnosis, ‘you wouldn’t even know I had it, the drugs controlled it so well,’ Michael says. But 125 mg per day gradually became 1,250 mg per day. More and more drugs for less and less effect. His weight fell rapidly from the tremors and dyskinesia, his speech deteriorated to such an extent that he spent more time repeating himself than being understood, his walking reduced to a shuffling gait and he had little energy for his weekly swimming, Pilates, and stretch sessions.
He started falling asleep randomly and lost count of the number of cups of coffee and tea that ended up in his lap. ‘And I don’t take milk,’ he quips, his dry Yorkshire wit never far away. Michael’s life was deteriorating rapidly. But as an avid cyclist, one of the toughest decisions was hanging up his bike late last year after one too many falls that included broken ribs and a punctured lung. The other hard decision? Surrendering his licence. ‘I hate being driven,’ he tells me.
When his new neurologist suggested Deep Brain Stimulation (DBS), hope returned. Asked if he took a lot of time to think about it, he was unequivocal. ‘No. I had nowhere else to go. I decided to roll the dice.’ After successfully completing the preoperative qualification assessments, Michael underwent 6 hours of surgery earlier this year.
DBS involves implanting tiny electrodes into the brain. Accurate placement is important, within an area ‘the size of a grain of rice,’ Michael informs me. The controller, like a pacemaker device, is placed under the skin just below the collarbone and is connected to the electrodes by a thin wire running under the scalp. Michael knew about DBS. ‘I’d seen it on TV once.’
Did he notice any immediate difference when he woke up? ‘No,’ he tells me. ‘But I knew someone had been in there.’ However, the effects he felt nearly 48 hours later when the controller was turned on and started stimulating the parts of the brain responsible for movement through the delivery of electrical signals.
That stimulation, in combination with a much-reduced medication regime, has stopped his tremors completely. Michael holds out both hands to show me his new found steadiness. ‘His speech is definitely better,’ his wife tells me. ‘He holds a conversation now and takes an interest in conversation.’ And ‘he’s got the energy to go out.’ It’s clear that she’s looking forward to getting back the husband that she’s shared a life with – they’ll have been married 50 years in January next year.
Four weeks after the operation, Michael took his bike for a spin. Ten weeks later he’s riding forty kilometres comfortably with no balance issues. He plans to increase his cycling distance each week. ‘Focused’ and ‘determined’ are two words used by members of Michael’s cycling group to describe him. The other? ‘Inspirational.’ Lynn describes him as ‘resilient,’ admitting he can be stubborn. But ‘it’s paid off in this case.’
Michael’s return to his weekly exercise schedule, though, hasn’t gone without a hitch. ‘I’ve lost the ability to swim.’ Incomprehensible for someone who, until the time of his operation, would swim for 45 minutes every Monday. His frustration, borne out of an inability to coordinate his arms and legs, is palpable. ‘I nearly drowned myself in the pool … I was slapping the hell out of the water, but I wasn’t going anywhere.’
When I meet him a week later, he’s enquired about swimming lessons and taken the advice of the pool lifeguard to try kick boarding. He’s already seeing improvement. Asked if swimming is something important to him, he replies, ‘No. Most boring exercise in the world, I reckon.’ But losing capability is not something he likes to entertain. ‘I didn’t go into this [meaning the operation] to be disappointed.’
He’s on the road to getting his life back. But he insists, levelling me with a steely gaze, ‘I haven’t got my full independence back.’ That’s his next goal. He wants his licence reinstated, something his neurologist is supportive of. He’s booked in some lessons and his test, which will be assessed by a driving instructor and an occupational therapist later this month.
And after that? Michael is planning to take part in a 1,000-kilometre charity ride in 2024 to support those diagnosed with ovarian cancer. ‘He’s always been like that,’ says Lynn. ‘Pushing the boundaries.’
Asked if he ever thought of giving up? ‘No way.’
