MND (ALS) is a terrible, life-ending disease — but one man is going to extraordinary lengths to end that
MND (Motor Neurone Disease, which includes ALS, Amyotrophic Lateral Sclerosis, Lou Gehrig’s disease) is a cruel disease, stealing a person’s body away piece by piece, and eventually their life, and there is little that can be done to prevent, slow, ease or reverse the process. But there is one brave man, Peter Scott-Morgan, who is doing everything he can to change that.
What needs to be done
When my sister was dying of MND a few years ago, I searched the internet for ways to help her. MND is a disease in a hurry to shut you down (with the exception of Stephen Hawking), and the patient’s needs are complex and individual. By the time the doctors and the necessary experts had got together and agreed a plan and ordered some piece of equipment, her condition had deteriorated and she needed something else. We had to scramble to do what we could to help in the meantime. I did manage to find some software online and buy a webcam that let her control a simple video game with her eyes and type out text. Very slow, but an enormous relief to her to be able to communicate again and to control something, even if it was only a game, and it tided her over until the NHS provided a better system. The NHS also provided a piece of equipment that we could strap her into so that she could stand again, and look out of the window — again of enormous psychological benefit, and some physical benefit too, but she could not walk, and latterly could not control a motorised wheelchair. The MND association was also a great help, lending equipment like a reclining chair good enough to sleep in. What is needed just for day-to-day living is items of flexible, adjustable equipment that can be supplied quickly and tailored to the patient, and that means software, technology and AI.
But there was so much potential in technology that had not yet been realised. Exoskeletons were beginning to be developed to help people walk again, but they were experimental and very clunky; they would not be ready in time. A voice system like that used by Stephen Hawking was possible but not widely available, and did not sound like the person’s own voice. Eye movement to text systems were slow with minimal predictive capacity.
The Human Cyborg
My sister’s illness is not the only reason that Scott-Morgan’s story resonates with me. In the 70s and 80s I wanted to get into robotics and medical computing, but I did not have his force of personality and never got out of being typecast as a commercial programmer/analyst. Scott-Morgan was already a roboticist when he was struck down with ALS, and immediately set about developing robotics, technology and procedures to not just overcome the physical disabilities the disease causes, but also to prevent it causing death. To do that, he had to become an advanced human cyborg.
Back around 1983/1984, when I was earning my MSc in Microprocessor Engineering and Digital Electronics at UMIST, one of my fellow students chose as his project creating a system that would speak with the patient’s own voice. IIRC he was unable to get the chip he needed to succeed. (My own project was to use an early portable computer, the Epson HX-20, to take input in a similar form to that of a Bliss board and convert it to text coming out sideways on the till roll printer. Unfortunately it never got used).
MND patients often die through choking on their own saliva or being unable to get enough oxygen. Scott-Morgan had a total laryngectomy to prolong his life. It meant losing his voice box.
Scott-Morgan now has a system which not only uses his own voice and word prediction, but includes an avatar with his own face, which is becoming more human-like with every new version.
I have two ostomies from the operation that saved my life. Scott-Morgan chose to have three, removing healthy organs so he could get all the nutrition he needed and would not need help going to the bathroom.
He is also working with others to build more and more functionality into his wheelchair, which he can control, and which is already capable of far more than most people’s wheelchairs.
With all this high tech, there is no escaping the fact that if it goes down he is locked in, unable to communicate distress. So they are also working on technology to detect when he is feverish or under stress. All my sister had was a baby monitor so her husband (he slept upstairs, she slept downstairs in a reclining chair) could hear what noises she could still make. Fortunately he was very good at waking up.
Scott-Morgan and his volunteer team of doctors and other experts have pushed the boundaries of what is possible not just for MND patients, but many others who face some of the same problems. Alas, he was too late for my sister, but the future is looking a lot brighter because of their efforts.
You can read more about his story here and his foundation is here.