Research hope

A Wangaratta man is the only Australian patient involved in a landmark research trial aimed at restoring the independence of people experiencing paralysis. Tony Smart, who was diagnosed with motor neurone disease eight years ago after two years of testing to determine the cause of his symptoms, is excited to be part of something he hopes will help him and others living with conditions like MND into the future. "I was always knocking down the door of my neurologist asking about trials, but there was nothing that I was eligible for," Tony said. "I could understand that, because a lot of trials focus on MND patients who are in their first two years of diagnosis, so the researchers can show that they have stalled the onset in those two years," he said. "Because I was deemed - and I'm not complaining about it - a healthy MND patient, with a lung function of 96 to 98 per cent (currently 92 per cent), I could never comply with their requirements, so I gave up. "This is a common story of people, like myself, who are relatively long-term MND patients." However, in May this year, Tony - who has no movement in his legs, though some in his toes, and is slowly losing the use of his arms and hands - heard from his neurologist about a possible trial opportunity. Invented by Australian neurointerventionalist Tom Oxley, the Synchron BCI (Brain Computer Interface) involves a permanent implant in a blood vessel in the motor cortex at the top of the brain - similar to a stent used in heart surgery - which is fed through an incision in the neck, eliminating the need for open brain surgery. The implant is connected to a cable leading to an antenna the size of a credit card (but four times the thickness) inserted under the skin in the chest, which collects raw brain data that can be sent to external devices such as mobile phones or laptops. This can enable people to send text messages and emails, and even operate light switches, heating and cooling systems, and doors, depending on their home's level of automation. Professor Oxley's invention evolved from his work during his neurology residency, when he cared for a man in his 40s who had developed 'locked-in syndrome' after a stroke, leaving him unable to move his body apart from his eyes. "He could see and hear and think and feel just like normal, but he couldn't move or speak ever again," Professor Oxley explained in a TED talk about his work. "I've been wondering ever since, was there not anything else that could have been done? "Connection is a fundamental human need; so many of our patients have lost the ability to speak, let alone type, for years, and they so desperately want to reconnect with their family, with their loved ones. "BCIs make all of this possible." Professor Oxley described Synchron as "a secret back door" to the brain, with blood vessels offering "natural highways". Tony's neurologist mentioned the trial during one of their regular Zoom hook-ups earlier this year, and sent him some links offering information. After exploring the program with wife Tanya, Tony emailed back to say he'd be happy to take the next step. "My neurologist put me in contact with the leading neurologist in this trial, and I said I've had a look at it - what are the next steps?" he said. A physical examination and a more detailed explanation of the procedure then followed, which Tony combined with an already-planned trip to Melbourne to watch his beloved North Melbourne play Gold Coast. Not only did the Kangaroos come away with a win from the weekend - Tony got a call soon after returning home to Wangaratta to let him know that he'd moved to the next step of the trial. He was admitted to the Royal Melbourne Hospital's neuroscience ward the following week for more testing, and met with the three professors who would be involved in the procedure. Then followed a visit to Wangaratta from the research team to check out the strength of Tony's home wi-fi, and the Bluetooth devices he would be able to utilise. "Everything ticked the boxes and they said you'll hear in a few days about when things will take place, which we had initially been told would be September/October," Tony said. "The next day, they told us there was a vacancy the following Wednesday and asked whether we could get down there then. "It all happened really quickly." The Smarts had already planned to attend the next week's King's Birthday Monday Big Freeze game at the MCG - the MND fundraising event pioneered by the late Neale Daniher. "We got tickets before Neale passed away, because I said to the family that I'd love to be able to go to one more, and I wasn't sure we'd be able to go to that, then come home and go back again on the Wednesday," Tony said. "But they said they'd pay for us to stay in the city, so originally we were doing a day trip to the footy, but we stayed Monday and Tuesday and then I rolled into the Royal Melbourne on the Wednesday morning," he said. Tony said attending the first Big Freeze without Neale Daniher present, and the fact that his surgery was scheduled for the day of Neale's funeral, added to the emotions swirling around in his mind as he, Tanya and sons Riley (28), Harry (26) and Wilson (23) awaited the outcome. Not to mention the fact that for the former builder, this was his first experience of surgery since having his tonsils out as an eight-year-old, and he'd had little medical intervention before the onset of MND symptoms. "I'd never been to the doctor - I didn't even have a GP, because I'd always been healthy," he said. Setting Tony at ease, though, was a pre-surgery conversation with Professor Oxley. "He walked in to meet me and I didn't recognise him straight away, but it was like Nick Daicos or someone walking into the room, the way people reacted," he said. "Because I was the first in Australia to do it, he'd flown in from New York and landed that morning. "I shook his hand, as well as I could, and we just chatted about footy and a little bit about his story. "He thanked me, and I said, 'Mate, at the end of the day, if I can help you achieve your ultimate goal and benefit others, why not?' "I asked him what he ultimately hopes to achieve with this, and he said the ultimate goal is to be able to electrify limbs to get them moving. I don't know how, but that's the end-game." Since his surgery, Tony has had regular visits from research team members Michael and Maeve, who collect data aimed at progressing the study. "There are 15 sensors, which we call channels, on the implant, and each of those sensors rests in some part of the motor cortex of the brain that knows I'm thinking about moving the mouse to control the keyboard," he said. "It automatically connects to the computer, so they log on and we do the testing, first making sure that all the channels are active. "Those channels are not all in the best part of the brain that works, and some work better than others, so you've got to go through all the channels. "With trial and error, we've worked with toes and hands, and moved to the strongest part of my body, from the shoulders up, with blinking and tongue movements to control the computer mouse." Maeve and Michael visit twice a week, and conduct another session remotely from Melbourne, completing exercises that Tony says are getting quicker as they go. "We're not far off from having a tablet set up on the bench that I can roll up to, turn on with face recognition, and any app that's on there I can open it - text message, phone call, email, turn the telly on and off, turn the heating and cooling on and off," he said. "I'm just happy to do this and be part of it. "Early stages it was slow-going, but that's just part of the process, and the two researchers are so good to work with. "I'm determined - I hate losing, and Michael is like that too, and when we nail something, you can hear us from three doors up. "Right now, I'm excited to see what comes next. "To think that I can be part of something that's going to help people down the track, I just think it's wonderful, really. "I don't have the profile of people like Neale Daniher and now Jai Arrow, who have helped so many people in relation to research and other things, but to think that this could be my little contribution to help, I reckon it's pretty good."

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