Giving a voice to people with motor neurone disease

Derek Nicholson has been living with motor neurone disease for five years. Fortunately, the progress of his condition has been reasonably slow, though he is now finding difficulty with activities such as walking and holding up his head.

This year, Derek, who is a retired teacher, has set aside hours of his time for a task which he hopes will help him if his MND eventually affects his ability to speak.

Derek has recorded 1600 phrases which have been ‘banked’ for possible use in the future. Using technology, the phrases he recorded have been turned into a synthetic voice. The benefit of this – over generic computerised voice systems – is that Derek, his friends and family, will continue to hear the sound of his voice if speech itself becomes too difficult. It is something that brings Derek great comfort.
I think it’s to do with the intimacy of knowing that the way you speak, is being heard by your family, your friends, people who know you, and recognise who you are through the words you say and the way you say them

The technology for voice banking has been available for some time. Now, speech and language specialist Matt Nakonesky is working to ensure it is available to all MND patients across Durham and Darlington. Matt, who works for County Durham and Darlington NHS Foundation Trust, says it is vital that people embark on the process before it is too late.
Timing is crucial. It’s a difficult one because we know that it’s a terrible diagnosis for a person to receive but equally, we know that we have to capture their voice at the right time before any deterioration has happened for it to be the best voice that they can have, later down the track when they do need to use it.

– MATT NAKONESKY, SPEECH AND LANGUAGE SPECIALIST
Motor neurone disease is relatively rare and progresses at varying rates between patients. An estimated 5,000 people are living with MND at any one time in the UK.

The Durham and Darlington project has received financial support from the charity, the Motor Neurone Disease Association. It says voice banking is important in allowing people to retain their personal identity. The charity would like to see it available for everyone living with the condition.
MND is a very devastating condition and while everybody’s journey is different with MND it can often bring people into isolation and they will lose their independence so even with their own family, being able to communicate effectively is extremely important.

– CHRIS JAMES, MOTOR NEURONE DISEASE ASSOCIATION
Derek Nicholson has no way of telling how, and if, his disease will progress but he does now have peace of mind, knowing he can continue to hear his own voice, even if he loses the power of speech.

Source: http://www.itv.com/news/tyne-tees/2017-10-09/giving-a-voice-to-people-living-with-motor-neurone-disease/

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