Son gives voice to Motor Neurone sufferers after disease took golf fan dad
WHEN Stuart Moss’s father was diagnosed with motor neurone disease his first thought was to be positive.
With his background working for Rollsroyce he thought he might be able to use technology to help his father.
Unfortunately that was not possible and his father Brian died on Christmas Day 2014, 17 months after his initial diagnosis.
But the traumatic experience left Stuart, 44, determined to do something to improve the lives of sufferers.
He has since invented pioneering technology that allows people with MND to have a conversation both in their own voice and in real time.
Currently incurable, MND affects the motor neurones of sufferers. It leads them to lose control of their muscles, first with small effects like tripping up but eventually leading to paralysis and loss of speech. This is what happened to Stuart’s father. However, as an IT innovation strategist, he spoke to his bosses at Rolls-royce about starting a non-profit programme to collaborate with other companies developing new technology.
One such innovation was to improve the accessibility of “voice banking”.
When someone with MND uses a device that speaks for them the voice can sound different to how they would really talk.
The most famous example is the robotic American-accented voice of Stephen Hawking.
Voice banking used to be an expensive, time-consuming process. But now it has been made much easier, taking technology to patients’ homes and helping them in a few hours, with help from the MND Association.
Stuart’s own innovation has taken this a step further. He has created new artificial intelligence technology that will allow people with MND to have a conversation, both in their own voice and in real time.
Stuart recalled: “My dad was on the golf course and kept losing grip on his club when he would take a shot.
“He couldn’t explain why. He also kept tripping up and falling over.
“When he told me he had MND I said ‘Don’t worry we will innovate our way out of this’. I was trying to be positive but I didn’t really know anything about it.
“When he said there isn’t a cure I though ‘Oh well, we just haven’t found it yet’.
“But it happens so quickly. People may think if they have 18 months to live they will spend 15 months of it okay and three months will be horrible.
“But it is the reverse. You go from being a normal 67-year-old to being completely incapacitated.
“In many cases the muscles you use to inflate your lungs are affected and they suffocate to death. You can’t tell people how you feel. You’re in solitary confinement thinking about suffocating and waiting for that to happen.”
After Brian’s death Stuart brought firms from across the technology spectrum together with the MND Association.
Named the Next Generation Think Tank, each company endeavoured to see what it could develop using its expertise.
In the field of communication, previously sufferers used an eye tracker to spell out words – but it is a slow process and can cause embarrassment. Now for the first time they will be able to talk through a computer using their own voice, words, colloquialisms and accent without pausing to type answers or being restricted to a prescribed set of words.
The system, which has been named Quips, was developed by Stuart and his team in their own time – on their lunch breaks and after work.
It uses a bank of messages that an individual has sent through text messaging, Facebook or other social media systems to understand their unique way of talking.
Then when the person is asked a question the computer listens and gives them a selection of options they would usually say, allowing them to answer as quickly as if they could talk and in their own voice. Nick Goldup, director of care improvement for the MND Association, said: “Having your voice stripped away is one of the most brutal aspects of MND.
“Technology that allows people to retain those things that make them unique – their voice, speech patterns, intonations and word choices – is a huge leap forward in enabling someone to retain their dignity and their sense of self.”
For Stuart, the development is too late for his father but he hopes other people will be able to live fuller lives for longer.
He said: “When I saw my dad on the day he died he couldn’t speak at all.
“I wished him a happy Christmas and the only thing he could do was let a tear fall down his cheek.
“I won’t ever get over that, to see [his death] in such a horrific way.
“This technology has no benefit to our family now. I just would never want anyone else to go through that.
“When I talk about tech stuff it gripes me that it didn’t exist then, when he isn’t here now. I could have made it more bearable for him, taken the edge off.
“My dad was a social worker and spent his whole life talking about what people were entitled to. His voice was his super power and his gift of the gab.
“That was why I did this stuff in the first place. I can’t think of anything more fitting for his memory than giving people their voices back.”