Given a Voice

Seperator

 

Grid3 video

The Button Mouse
This 2nd generation model has a USB port, solving the problem of the fragile connection when the cable was directly wired into the mouse.

Back in September, just before Polly and I went on our cruise, I had been visited by the Compass Assistive Technology Service, usually referred to simply as the Compass Team. If you have read my previous posts, and particularly Things are Rigged, you may remember that, in early July 2018, I had lost the ability to speak. While things had marginally improved – I could say a few words, but barely above a whisper and, only on a good day – I had spent much of the summer communicating using a communication board (see Into the Dark (part two)). The Compass Team had come to supply me with something much more sophisticated.

 

First, they fitted an adjustable metal stand on the front left of my wheelchair. On to the stand a small computer with an 8″ screen was attached. Then they fitted a gizmo to the back of the chair that enabled me to navigate the computer via Bluetooth, using the joystick on my wheelchair controller. Installed on the computer, a PRC Accent 800, alongside the Windows 10 OS, was software called Grid 3, a program that includes, among many other features, a text-to-voice synthesiser app, not unlike the one the late Professor Stephen Hawking used. Using the FastText Talker, I can write a sentence using its on-screen keyboard, click on the speech-bubble icon, and the computer speaks out loud what I’ve written. The program remembers what I’ve written, so if I start writing the sentence again, it brings it up on-screen and I can click to finish the phrase. I can store commonly used phrases, like “My hovercraft is full of eels” in cells displayed on the eponymous grid. The app is intuitively easy to use and is a hundred times faster than my old communication board. 

Now, here in the Brompton’s adult ICU, as the hallucinations faded and my condition stabilised, I faced new problems. My inability to communicate with the doctors, nurses and physiotherapists who were treating me had been an issue since the day I had first woken up after my unfortunate heart and respiratory failure. It was hugely frustrating not being able to ask for my arm or leg to be moved so as to relieve the frequently excruciating cramp I was experiencing. I had questions I wanted to ask about my prognosis and, most importantly, how soon I could go home. I was also suffering something that until now had been a minor issue, given the whole nearly-dying thing I had going, chronic boredom. My room had a TV tucked away high in one corner, but it was difficult to see because of the position of my bed. And, because of my hearing and the background noise of monitors and the ventilator, it was impossible to hear the TV unless the volume was turned up to an

PRC Accent 800

anti-social level. I couldn’t even read a book because I had no way to hold even a Kindle in a position I could see it and be able to turn the pages. Not being able to read was a genuine hardship. I always have a book to hand. Ask Polly; she still laments the fact I took a book to our wedding in case there was a lull in the proceedings. Well, there might have been.

 

A day or so later, I had a visit from Gerard, a member of the Compass Team. He brought with him a stand, on to which he mounted the Accent 800 computer. He also brought a tiny black box he had made, that plugged into one of the computer’s USB ports. He called it a Button Mouse, and it was fantastic. With it, I could control the computer, using just one finger. Now, I could use the Grid 3 program from my bed. I could talk. 

It is difficult to overstate the difference the stand and button mouse made to my quality of life. Being able to say “Please move my left arm”, or “Can I have some pain relief, please”, or even “Please drain the ventilator tube of water”, made my life a great deal more comfortable. But, more profoundly, it changed people’s attitude towards me in a subtle but meaningful way. Let me be clear, the staff at the Brompton and, before that, St Helier, had never been anything less than kind and professional. However, there is a natural tendency, when faced with someone who has no voice, who can make virtually no physical gestures, and who has minimal facial expression, to make unconscious assumptions about that person’s cognitive abilities. When Polly was present, information was usually directed to her. When Polly was absent, conversations about my treatment would often be conducted over my bed, followed by a greatly simplified synopsis directed at me or, on many occasions, no attempt to include me at all. When I was included, staff would frequently phrase questions in a frustrating way. I could nod my head for Yes and shake my head for No. How do you answer a question like, “Are you hot or cold?” or “Are you happy or sad?”, when you only have a binary yes/no answer choice? This may sound trivial, but when it happens for the hundredth time, it becomes exasperating. Access to the computer and the Grid 3 program meant I could at least answer, “I’m cold”, or “I’m happy.” 

The simple fact that I could operate a computer caused doctors and nurses to communicate with me differently. Nurses began to engage in conversation with me on subjects outside of my immediate medical needs. I could tell them about my family, my home-life, my background. They, in turn, would share something of themselves. When I had only been able to communicate via the communication board, conversations were, by necessity, minimal, making me appear abrupt. Now, I could add ‘please’ and ‘thank you’ to requests, express appreciation for the many kindnesses shown to me. I could ask and answer questions about my treatment, meaning medication could be tweaked and made more effective, speeding my recovery. In short, I became less patient, more person. 

The equipment the Compass Team supplied me with also went a long way to solving my problem with boredom. I was able to piggyback off the hospital wi-fi and sign-in to my Kindle and Netflix accounts. Polly and I would watch films together, and I would read long into the night after she left. I also had access to BBC iPlayer and ITV Hub, so I could catch up with the newly regenerated Doctor or revisit old episodes of Vera. 

ICU is a stressful environment, even for a few days, and I had been there for weeks. Being able to access the world via my Accent 800 computer was hugely beneficial to my mental well-being. When, as happened on a number of occasions, the button mouse broke – usually because of mishandling by staff who didn’t understand its purpose or its relative fragility. (The point at which the cable entered little black box was particularly vulnerable), I found myself becoming extremely anxious. Fortunately, going above and beyond, Gerard would either repair or replace the device within a few hours. On at least one occasion he delivered the replacement directly to Polly, who was waiting on the pavement outside the hospital. 

The Compass Team, Jane – Clinical Lead, Dante – Technical Support, and Gerard – Clinical Technologist, are part of a small, highly specialised, team, based at the Royal Hospital for Neuro-Disability in Putney, London. Compass is the Specialised AAC Service for West London. They assess and provide Augmentative and Alternative Communication (AAC). These are other methods of communicating that can be used alongside, or instead of, talking. They make recommendations based on your needs and provide support to help you achieve these. 

The service is for adults (16 years and over) who have difficulty communicating using speech and who may also have physical difficulties which impact further on their ability to communicate.  

I have an ongoing relationship with Compass, so, at some point, I will be writing more about the way they have helped me and improved my quality of life.

If you would like to learn more about their invaluable service, please visit – 

Compass Specialised AAC Service information

Compass Specialised Augmentative and Alternative Communication Service

Meet the Compass Team and more useful information

To learn about services in your area (UK only) visit – 

UK Regional Specialised AAC Services

 

 

 

 

 

 

 

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5 Comments

  1. Sheryl Anderson on 08/02/2020 at 2:46 pm

    I no what you mean about revisiting old episodes of Vera. Such intricate plot lines are wonderfully absorbing.

    • Sheryl Anderson on 08/02/2020 at 2:48 pm

      Bloody predictive spelling… I *know* what you mean….etc

  2. Toby Loweryp on 08/02/2020 at 5:47 pm

    Wonderful to learn about all of this technology from someone using it Stephan. I think that you should have a wider audience

  3. Patrick Stonehewer on 09/02/2020 at 12:44 pm

    As ever, thanks for your news Stephen – with love and prayers for you all

  4. Debbie on 12/02/2020 at 9:53 am

    Thank you Stephen for sharing this. I agree that medical staff would benefit enormously from reading your blog. I am going to share the link with teachers and students who attend Wilson’s school medical society. I think they would appreciate your insight. Your sense of humour and your tenacity of spirit never fails to impress me. Here’s to the marvellous team who were able to give you back a voice. Keep on keeping on. Sending all good wishes

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