That was in 2000 when Simon was 46 years old, he was told it would be unlikely he would reach the age of 50.
Simon is now 58 and thankfully, due to the unusually slow progression of this fatal neurological disease, he still has the use of his legs, arms, hands and voice.
He has decided to use his understanding of how this illness can affect sufferers and their families at first hand to help others who are experiencing a more rapid decline. What is driving him on with this work is thinking about the frustration experienced by sufferers when their intellect and senses remain intact but they are unable to communicate their thoughts, feelings and needs to their loved ones, carers and friends.
Simon has been undertaking extensive research and is finding that although there are many AAC products on the market they can tend to be quite expensive and require intensive setup, training and maintenance. Not everyone has the funds or ability to understand complex technology and he has realised that there is a gap for simpler, 'user friendly' alternatives.
Having spent his working life in Information and Communication Technology (data capture, bar-coding, touch & non-touch interfaces) Simon is actively exploring cheaper alternatives that are simpler to use to help people with this debilitating condition. He is researching and testing cost effective and simple solutions assembling hardware and software that can operate on a standard laptop, netbook or tablet with a webcam.
"This technology will empower people who lose their power of speech and motor control of their hands to gain direct control of the laptop using simonface recipes, enabling them to regain communication, environmental control, speech synthesis, email, web browsing and social networking, keeping their lines of communication open and therefore enhancing their quality of life."