By Marc O'Driscoll
A former science teacher who was diagnosed with motor neurone disease in 2022
has spoken about how he has benefited from a new voice-banking service
supported by the fundraising efforts of Charlie Bird.
John Daly, from Cabinteely in Dublin, has described feeling isolated after
losing his speech because of his condition and how Scotland-based company
SpeakUnique helped him to find his voice again.
SpeakUnique began in 2012 as a University of Edinburgh research project,
offering personalised synthetic voices.
The company has received funding from the Irish Motor Neurone Disease
Association and the Motor Neurone Disease Association in the UK, which in turn
have benefited from fundraising by former RTÉ journalist Charlie Bird.
Mr Bird's 'Climb with Charlie' campaign raised at least €3.4m for charities
including the Irish Motor Neurone Disease Association and Pieta.
Mr Bird died on Monday at the age of 74 after a long battle with MND and had
himself used a voice-banking technology to communicate with family and friends
that was designed with the help of Dublin software consultancy, Marino Software.
Although, Mr Daly used a separate voice-banking company to Mr Bird, he said how
it improved his quality of life was the same.
"I spent many hours reading phrases to allow my fading voice to relax," he said.
"Then with some artificial improvements from the app, I now have a way of
speaking phrases and even whole paragraphs that I type into the app.
"I can use it on my iPhone and iPad, and I can amplify it a bit for social
settings using a small Bluetooth speaker on my waist.
"Two weeks ago, I had to make a short thank you speech at the Irish Science
Teachers' Association annual conference in Waterford. I held the iPad up to the
public address system and it worked brilliantly.
"I even got a standing ovation for my efforts."
Mr Daly reflected on the isolation felt by someone who has lost the ability to
speak independently as a result of MND.
"This is not a complaint, just a statement of fact," he said.
"Even with this miracle app, I am suddenly isolated in a world of my own.
"If a casual question is asked from across the room, I must write or type a
response and show it to the other person or get SpeakUnique to say it.
"Conversations, after all, are full of interjections and rapid changes of
topic. Typing falls far behind, and my laborious remark becomes irrelevant by
the time it is announced so I am both grateful and frustrated at the same time."
The CEO of SpeakUnique said Mr Bird's work with the IMNDA was invaluable in
making the service accessible for everyone.
Speaking on RTÉ's Morning Ireland programme, Alice Smith said a couple of
hundred people register with the service every month.
"It costs a couple of hundred euro but we partner with charities to try and
remove financial barriers," she added.
She said that the technology has been developed over a number of years and
combines linguistics and computer science to create a system that can take a
short recording of someone speaking. This then creates a synthetic voice that
is capable of saying anything the individual might like to say, she said.
Ms Smith told Morning Ireland that the service helps a number of people who are
unable to speak.
"There's a number of medical conditions that can result in people being unable
to speak, for example, neck cancer, some people will undergo surgery.
"People living with conditions like cerebral palsy might mean they've never had
their own voice, but also other neurodegenerative diseases and Parkinson
conditions.
"So, again, we try and work with people living with those conditions to make
the technology fit for their purposes as well," said Ms Smith.
SpeakUnique now plans to continue to develop the technology by adding new
languages to the service (English is currently the only language available) and
also help children who may never have been able to speak or who may have other
conditions such as autism spectrum disorder (ASD).
Mr Daly also spoke about the difficulties that come with an MND diagnosis.
"My swallowing ability is almost gone," he said.
"I have a direct line into my stomach for calories and hydration and it works
very well ... because my leg muscles get no signal, my head won't stay up and
so [my] walking ability is deteriorating.
"I'm getting all the help you could ever ask for, between the local HSE support
and the Irish [Motor] Neurone Disease Association and Professor Orla Hardiman’s
clinic at Beaumont.
"I feel everybody is on my side. My love, Deirdre, and I will struggle on.
There are many in the country with much greater problems."
RTÉ News.
