On this first anniversary of my tracheotomy and laryngectomy (to quote my darling daughter Kimi, being stabbed in the throat and losing my voice), I am posting a piece commissioned by Control Bionics, about their technology which enables me to communicate, remain connected with family, friends and the community, and live an enjoyable life.
I wonder what you are doing as you read this. Perhaps you are sitting on the bus, scrolling down your phone with one thumb and lazily scratching your knee with the other hand. Perhaps you are lying on your tummy in bed, turning your head now and then to read out lines to your half-asleep partner. Perhaps you are sitting at your computer, pushing away the cat and sipping a cup of tea as you read. Perhaps you are ensconced in the smallest room in the house, the only way to have any peace. Or maybe – like me – you can’t do any of those things.
In January 2013 I was diagnosed with motor neurone disease (MND, or ALS), a degenerative neurological condition in which death of the motor neurones progressively affects the muscles we use to move, speak, swallow and breathe. Now I am almost completely paralysed, happily still able to smile and eat. A year ago I had life-saving surgery – a tracheotomy and laryngectomy – so that a ventilator can breathe for me. Without my voice box I can no longer speak.
When I was diagnosed my biggest fear was leaving our daughter, then aged six, without her mum. Next was losing the power to communicate, an ability deeply intertwined with my identity as a lecturer, writer, family member and friend. Many people worry about having others help feed them or wipe their bum (better than going without food or bum wiping I reckon); for me losing the power to communicate loomed as a much bigger challenge.
That year of diagnosis two things helped allay my fears somewhat. One was at an MND NSW information day seeing specialist speech therapists discuss the range of available technologies, from simple alphabet boards to iPad apps, switches and eye gaze. The other was watching an episode of Australian Story on ABC TV which featured Peter Ford and his invention, the Neuroswitch.
The Neuroswitch, now NeuroNode, has three sensors that sit on the skin over a muscle, in my case on my left forearm. When I try to twitch my thumb they pick up the electrical signal running from my brain down my arm, and the computer inside the NeuroNode converts that into a mouse click which is sent to my device using Bluetooth. When it is paired to my iPhone it uses the phone’s inbuilt switch control function so I can choose apps, scroll through the keyboard and select letters, get the phone to “speak” using its synthetic voice, Ryan, and – with patience – do anything you can do on a phone except have an old-fashioned conversation. It’s truly life-changing!
I am very lucky that I have been able to trial and use developing incarnations of Peter and the Control Bionics team’s technology, with support from my fabulous neurologist, Dominic Rowe, and the NDIS. The latest, the NeuroNode Trilogy, combines new technologies to massively increase the speed of writing (I have written to here in one two-hour session).
The main differences for me are the updated NeuroNode with internal battery and its combination with eye gaze technology to interface with a Surface Pro tablet. The previous NeuroNode used rechargeable batteries that theoretically lasted four hours but, as is their wont, degraded to the point where they needed changing every couple of hours. This was ok with carers (or during my long hospital stay, nurses) who were attentive and understood the critical importance of communication; not great when I woke with the battery dead and unable to call out for help.
The new NeuroNode 3 has an internal battery that lasts approximately 24 hours (more, in my experience). Each day, I spend about an hour in front of the telly with the NeuroNode sitting on its charger and a carer in the room in case I need suctioning, a drink or some other adjustment (this could be done during sleep).
The Trilogy also includes a Surface Pro with eye gaze cameras and Smart Box’s Grid 3 software. As I understand it, with conventional eye gaze, moving your eyes to a certain point on the screen moves the cursor to that point, and then blinking or holding your gaze for a set time is like a mouse click. With the Trilogy, my eyes move the cursor but, with a thumb twitch, my NeuroNode “clicks” the mouse, selecting the letter, word or function.
The Trilogy comes with a suite of apps, including some great ones for kids or non-verbal people, and, because this is cutting edge technology, Peter and the Control Bionics team have been helping to keep enhancing the functionality. The main speech app, Text Talker, has excellent predictive text (which learns from the phrases and sentences I use), and enables me to generate text about as quickly as my former able-bodied self could have typed it. This means that I can participate in conversations with my family and friends much more easily than before (one friend fondly described my previous delayed interjections as like a beer-fueled pub conversation). This app also comes with four voices, including my new default, “Lisa”, whose gently Aussie timbre is as clear, but less aggressive than, Ryan. The voices can be manipulated for Halloween-esque fun, and we have also enjoyed playing with the message banking function, recording select phrases in a variety of friends’ (or American President’s) voices. (If I had had this before my laryngectomy I could have recorded phrases in my own voice, something I would recommend to people with conditions like MND who know that they might lose their capacity to speak).
For writing (like this) I prefer to use the basic Notes text editor. When it first arrived, the onscreen keyboard had a curious anomaly – no comma (there was, however, a dollar sign – perhaps a metaphor for contemporary priorities!). Peter has since edited the keyboard. He has also set up WhatsApp and email as my main ways of communicating with others at a distance and sending text between the Surface and my iPhone. I’m still a novice, but exploring use of the Trilogy for web browsing, YouTube, Facebook and directly controlling the computer environment.
For many users, and perhaps – down the track – me, the Trilogy will work as the sole communication device. Personally, I prefer to move between that and my iPhone. The Trilogy is far superior for writing, quickly and easily, but I also like being able to use the smaller phone screen, which doesn’t need to be directly in front of my face, for when I want to play games or check social media or order dinner while I listen to a podcast or watch TV.
I may have lost my ability to move and talk and breathe by myself. But I am so lucky that this technology enables me to communicate, write and play!