Tim Trembath, like most dads, was pretty sure he could beat his son at his own game.
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The “old dog” still had some tricks up his sleeve and when his son challenged him to see who could do the most chin-ups, Tim was pretty confident. But strangely, he could barely get his feet off the ground.
It was in October 2012 that the fit and healthy family man started to question that health.
After failing the chin-up challenge, Tim grabbed a one-kilogram hand weight and tested his strength. Left hand: no problem, 30 bicep curls were easy. But his right hand?
“I couldn’t even do 10 with my right,” he said.
Wondering what on earth was going on, he went to see his local doctor, who referred him to a neurologist.
The muscle spasms in his arms and upper body were alarming and a few tests confirmed it in early 2013: Tim Trembath had motor neurone disease.
Five years later, Tim is laying on a bed, speaking on the phone from his Lake Cargelligo home.
Life has changed dramatically for the former state water manager. He needs a walker to get around now and recently got a wheelchair that’s taking a bit of getting used to.
A new car, specially adapted to take a wheelchair, sits in the driveway.
But perhaps the saddest change is the absence of his beloved motorbike, replaced by a motor home last year.
“I sold the bike a bit over a year ago, that was a bit harsh, I couldn’t do it any more,” he said.
“I don’t even drive now. But last year we managed to do a trip, we got a motor home and did a trip up to Cairns that took four or five months.”
What is motor neurone disease?
The progressive neurodegenerative disease erodes motor neurons – cells in the brain and spinal cord that control muscular function – until it becomes difficult or impossible for a person to walk, talk, speak, swallow and breathe.
It often begins with subtle muscle weakness in the hands or legs, creeping up like a stealth assassin as it wipes out hundreds of millions of nerves, leaving muscles to wither from being powerless to move limbs.
No two cases of MND are alike. For some, the disease rapidly ravages their body within months, while others can live for years after their diagnosis.
Most famous among long-term survivors of MND was noted physicist Stephen Hawking, who was diagnosed while he was studying at Oxford University.
Despite being given just two years to live, Hawking went on to revolutionise scientific understanding of the cosmos for decades, achieving fame and stature that had him frequently named among such greats as Einstein and Newton.
Hawking’s great work was in spite of his disease, which left him confined to a wheelchair, robbed him of his voice and eventually claimed his life earlier this year at the age of 76.
The disease also has a few well-known faces in Australia, including the Riverina’s own Neale Daniher, a former AFL Essendon player and Melbourne coach, who was diagnosed in 2013; scientist Justin Yerbury, who recently featured on ABC TV’s Australian Story; and former Balmain Tigers star halfback Scott Gale, who died at 39 in 2004.
“This is a disease of nice people,” Dr Stanley Appel, a world authority on MND from Houston Methodist Hospital's department of neurology in the US says.
He’s speaking to a packed hall of neurologists and students at Macquarie University, one of Australia’s leading MND research centres.
“Often they are in exceptional health, high achievers who tend to be more empathetic than most.”
This doesn’t mean a cause-and-effect relationship between being nice and getting MND, he hastens to add.
As scientists inch closer to an understanding of the mechanism behind MND, they’re also coming across a tantalising – and hideously complicated – range of possible culprits.
Surveys of death certificates of former NFL players by New York’s Columbia University have found they’re four times more likely to die of ALS – a form of MND – than the general population.
Similar clusters have been found among soccer players in Italy and the UK, and very recent studies have pointed to a possible connection between highly vigorous exercise and MND.
One of the most intriguing clusters of ALS occurred on the island of Guam in the 1950’s and 60’s, when the disease was at least 50 times more common than in the mainland US.
A possible culprit is a toxin called BMAA, found in unwashed cycad seeds. The locals devoured the seeds when food was scarce during World War II, only succumbing to the disease one or two decades later.
The same neurotoxic amino acid, BMAA, has been found in the blue-green algae caused by agricultural run-off from pesticides and fertilisers, known to kill livestock.
For the past six years Macquarie University’s Professor Dominic Rowe and his team have been studying a cluster of MND sufferers in the Riverina, where blooms of blue-green algae have frequently popped up along the Murray and Murrumbidgee Rivers, and in the state’s Hunter Valley.
“Studies in the US have shown that those who live near rivers and lakes, with frequent algal blooms, are more susceptible to MND,” he says.
Finding a cure
Dominic Rowe is the principal investigator in the trial of a new drug for MND, Copper ATSM (Cu-ATSM), which began in late 2016.
While it’s no cure, and cannot reverse pre-existing nerve death, the drug could be the most significant breakthrough yet in slowing the merciless march of the disease.
“We’ve finished one trial and we’re in the middle of another trial of therapies that will dramatically slow and eventually stop MND, so we have rubber on the road for the first time,” Rowe said.
The research, an Australian-first, involved the collaboration of a trio of professors from the University of Melbourne (associate professors Anthony White, Kevin Barnham and Paul Donnelly).
“There is actually a 20-year backstory to the trials and this is the first time they’ve been used on humans,” he added.
Rowe has 70 scientists working solely on MND research, all of them paid for through fundraising efforts.
In laboratory studies, Cu-ATSM extended the life of mice with ALS from two weeks to almost two years.
“If we can slow down the progression of ALS by 50 per cent, we could potentially triple, or quadruple, people’s survival,” Rowe said.
The research team has also been experimenting with a repurposed HIV/AIDS drug called Triumeq.
A $1 million laboratory below his clinic contains tanks of transparent zebra fish, injected with the human gene that causes inherited MND.
When motor neurons die, they glow yellow.
“There has to be a biological reason why one sufferer is dead in eight weeks and another lives for 30 years,” Rowe muses.
Life after diagnosis
That fighting spirit is present in people like Tim Trembath, who took part in drug trials and research in an effort to help beat the disease, although the process provided a terrifying glimpse of the future.
Seeing patients struggling to walk, breathe and talk is confronting and Tim says he now tries to avoid seeing other people with MND.
“There’s a bloke from Queanbeyan who sticks with me, while he was getting his treatment I met his little girls and his wife, he had similar symptoms to me and he quickly progressed… that sort of gets you down a bit,” he said.
“I’ve had to do me end of life choices, it’s not something I want to think about. I’m also getting more and more dependent now, my wife Karen looks after me but I need to get used to other people caring for me because the husband-wife relationship is different to the carer-patient relationship.”
During the phone call, Karen walks in with their granddaughter and Tim’s mood immediately lifts.
The grandchildren, soon to be joined by another new arrival, bring a lot of joy and there’s another trip to Queensland planned for later in the year.
The warm weather helps the symptoms, Tim says, and it’s a chance to get back out on the road like he used to do on his bike.
“It’s been five years and I feel like I’m still going OK,” Tim said.
“My lungs, my speech, they really haven’t been effected at all. I’m a bit disappointed I can’t be in medical trials any more because of their protocols… I’d love to be involved in finding a cure.”
If you would like to donate to Macquarie University Centre for MND Research, click on donate on their website.
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