I lost my voice through Motor Neurone Disease – but you can donate yours Euan MacDonald, who has Motor Neurone Disease, explains how people living with the condition could be given a new voice – with your help […]

Euan MacDonald, who has Motor Neurone Disease, explains how people living with the condition could be given a new voice – with your help

When you receive a diagnosis of Motor Neurone Disease (MND) there are many challenges facing you.

Your voluntary muscles are affected. For me it was a loss of power and dexterity in my left hand and arm I noticed first, then my right arm. Then it was several years later when my leg function declined.

There are different types of assistance available for this, whether through equipment or someone giving you a helping hand.

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There is no doubt that technology has had a massively positive impact on my life. I use eye gaze technology now to communicate. Others might use iPads, a head mouse or a switch.

It is hard to overestimate the value of communication – it is an essential part of life. I would be isolated from society without it.

About Motor Neurone Disease Motor neurone disease (MND) is a progressive disease that attacks the motor neurones, or nerves, in the brain and spinal cord. This means messages gradually stop reaching muscles, which leads to weakness and wasting. MND can affect how you walk, talk, eat, drink and breathe. However, not all symptoms happen to everyone and it is unlikely they will all develop at the same time, or in any specific order. Although there is currently no cure for MND, symptoms can be managed to help achieve the best possible quality of life. Source: www.mndassociation.org

Social media, text messages, emails, instant messaging and video calls are part of the way people now communicate, and I can do all of those thanks to my device.

While medical research can be slow and deliberate, technology has moved incredibly fast – and it’s in the field of speech and communication where it has been most useful.

‘The prospect of losing your voice can be daunting’

In my case my speech muscles gradually deteriorated over a nine-year period (in some cases it’s almost immediate) – at which point I started using a communication device.

While these high tech Augmentative and Alternative Communication (AAC) devices can be invaluable, one common complaint has been the quality of the synthetic voices used in them.

There have been issues with clarity and pronunciation. Even more fundamental than that is the accent itself. Your voice is part of your identity.

Patients with a progressive disease like MND have to cope with a plethora of changes to their lives. The prospect of losing your voice can be daunting.

Having to use a voice that sounds nothing like you to make yourself heard exacerbates that. It was my own anxiety about losing my voice which led me to start investigating what options are available.

‘Personal synthetic voices’

The Speak: Unique Voicebank Research Project is a collaboration between the University of Edinburgh Informatics department and its Motor Neurone Disease clinicians.

It’s aim is simple – to try and create personal synthetic voices for AAC devices rather than something generic and off-the-shelf.

The idea is that people who may need to use a communication aid in the future could “bank” their voice through less than one hour of speech recorded in a sound booth.

MND facts It affects about 5,000 people in the UK at any one time The risk of developing MND is about one in 300 It kills a third of people within a year of diagnosis and more than half within two years Source: www.mndassociation.org

From that, a voice can be created. Crucially, for those with impaired speech at the time of recording (like me), their voice can undergo a repair process.

This voice building and repair process is still in development at the moment, but is being piloted in three Scottish health boards in 2017 to see if it could one day become a service available to everyone.

Donating your voice

This simple process is only possible through the use of donor voices – it is the use of a library of healthy donor voices that enables the build and repair process mentioned above to happen.

It also means that someone who hasn’t banked their voice could have the option to choose a voice with an accent similar to their own. If I can make one request, it’s for people to come forward and donate their voice.

We are particularly appealing for Scottish accents from Orkney, Shetland and the Western Isles and male voices from Dumfries & Galloway, The Borders and The Highlands.

We are also starting to look for other accents from across the UK – you can find out whether we need your accent by going to www.speakunique.org.

There may be people out there who would cherish the ability to use your voice.

Euan MacDonald runs his own disabled access reviews site, Euan’s Guide, at www.euansguide.com