After Matthew Hodge was diagnosed with motor neurone disease, it was Australian-designed medical technology that allowed him to take control of his life despite the debilitating condition.
Even though he’d lost the ability to speak and move his limbs, Mr Hodge was still able to interact with his family and friends, and even plan his own funeral, through the use of a computer.
“It let us communicate with him and know what he was thinking and what he was feeling,” his wife Joanne said.
Long road to diagnosis
Until then the family’s general understanding of motor neurone disease (MND) was through the fame of physicist Stephen Hawking, who lived with the disease for more than five decades after his diagnosis.
“I can still remember the very first thing [our doctor] said to us was, ‘Yes, that’s what he’s got, but you’re not going to live that long’,” she said.
When their doctor drew a small graph to illustrate the expected lifespan of those diagnosed with MND, it was then Ms Hodge comprehended just how little time her husband had left to live.
“[He said] if we were to plot Stephen Hawking on this graph, we’d have to walk across the road to put his dot, that’s how far an outlier he is.”
With the gradual loss of his motor functions, Mr Hodge and his family relied on mobility equipment lent by the Motor Neurone Association of NSW.
“One of the things with MND is you don’t have a long life expectancy, so to buy a lot of the equipment is really expensive,” Ms Hodge said.
Communication equipment was harder to come by but Mr Hodge was generously provided with a device called a NeuroSwitch.
With small electrodes attached to his arm, he simply had to think about moving a muscle which allowed him to control a connected laptop computer.
“He could use the same technology to do the online shopping, to do banking, to send emails, to send text messages as well as use it to speak.”
The device was donated by medical technology designer Peter Ford, chief executive and founder of Control Bionics.
The Sydney entrepreneur’s work was recently acknowledged by winning the Duke of York’s Pitch at the Palace Commonwealth Boot Camp business event in London.
His invention was even put to the test by Professor Hawking over a five-year period — an opportunity which gave Mr Ford’s company valuable insight into how to improve it.
“I think he was the toughest teacher on the planet to take your homework to,” Mr Ford said.
Advancements have meant the device, now known as NeuroNode, is wireless, wearable and able to connect to tablets and mobile phones.
It is being used by war veterans in the United States and Australia, and the company has acquired approval to supply it to school students with disabilities in the state of New York.
Patients with traumatic brain injuries, spinal cord injuries and cerebral palsy are also able to use it.
“The thing that really inspires us is the courage and grace of the people we work with; people with severe disabilities and their family for whom this is a long-term commitment,” Mr Ford said.
“Their endurance inspires us to do what we do to try and help make their life a lot easier.”