A grandad diagnosed with the progressive muscle wasting condition Motor Neurone Disease has revealed how he has “banked” his voice so he can still communicate in a recognisable way with his family when he loses it.
Tony Plant, 62, is one of the first people to successfully voice-bank and is now doing all he can to raise awareness to encourage other people to do the same.
Speech and language therapists at East Lancashire Hospitals NHS Trust helped Tony to fulfil his wish of banking his voice when he realised his speech was becoming affected and that he would eventually lose it.
Tony, who is married to Janet and has twin daughters Claire and Lucy and three grandchildren, knows that he will gradually lose the ability to do things but if he can still communicate with a form of his “real” voice, he says it will be more bearable.
Former bricklayer Tony remembers first experiencing a problem with his speech about four years ago, but did not realise it was anything serious.
He said: “People who used to come into the shop have since told me that occasionally I slurred my words and they thought I’d had a drink. I was a little aware of it, but thought I was just talking too fast and did not know what it was.”
Just over two years ago, Tony decided to retire and move to Bolton-by-Bowland in the Ribble Valley, where he now lives and his plan was to spend his retirement travelling and fly fishing. However, he suffered health problems after a fall from a ladder while carrying out some work and broke his spine.
Tony recovered from his injuries, but noticed soon afterwards that he was starting to trip a lot and realised he could not do things like walk and blow his nose or sneeze at the same time.
Tony joked: “I know men can’t multi-task, but I thought I should be able to do simple things like this at the same time.”
Tony went to see his GP who picked up on the slurring of his speech and thought he might have suffered a minor stroke and sent him to hospital for tests.
Tony said: “I then had 18 months of tests as Motor Neurone Disease is fairly rare so they tend to look at other diseases before they even consider that.
However, myself and my wife strongly suspected about six months before the actual diagnosis that I had Motor Neurone Disease as all the symptoms seemed to fit.”
Tony was diagnosed with Motor Neurone Disease in October 2016 and despite their suspicions, it came as a huge shock.
Tony explained: “We were told the worst case scenario that most people only live three to five years from diagnosis. Eventually everything shuts down apart from your brain. Motor Neurone Disease is different in everybody, but most people eventually lose their voice.”
Tony was referred to Burnley General Teaching Hospital for speech therapy and is full of praise for the help, support and encouragement staff have given him. Rhiannon Evans, speech and language therapist and part of the community team at East Lancashire Hospitals NHS Trust helped Tony when he asked her about voice banking.
Tony said: “I had read about voice banking, but did not know much about it and Rhiannon was very supportive and told me I should record my voice. She told me that no one in the Ribble Valley had done it yet and that was like a red rag to a bull and made me determined to do it!”
Voice banking allows a person to record a set list of phrases using their own voice while they still have it. This voice is then converted to create a personal synthetic voice.
Tony explained: “You have to go to a totally quiet room and record 1,200 sentences in a monotone voice. You can do about 30 to 50 sentences and then you get tired.
It took me about three weeks to work through all the sentences. It is a bit of a strange process as some of the sentences are from The Wizard of Oz and White Fang. I thought I would be talking phrases from The Wizard of Oz! But they take your sentences down to single letters and re-join them. It is amazing and very clever how it works.
“My banked voice is used to create me a voice. It is a computer generated voice, but it is my voice. The best way to describe it is if you have brothers or sisters, when you speak to them on the telephone, they sound like you, but not exactly like you.
“When I lose my voice, if I have got use of my hand, I will be able to type and use my banked voice to speak. If you are paralysed and can’t type, they have a thing called eye gaze where you can blink words. The function I will miss most is when I’ll lose my voice as communication is everything. I know I will end up in a nasty place but if I can still communicate, things will be more bearable.”
Tony’s MND has now progressed and he cannot walk and is in a wheelchair. However, he is extremely positive and isn’t allowing his condition to stand in the way of anything he wants to do.
Tony said: “I have some bad moments, but between us, we won’t let it defeat us. I am still fly fishing. I might not be able to walk into a river but I can still fly fish from a boat.”
Tony even has disco lights on his wheelchair so he can go to pub in his village safely.
Tony said: “The village where we live is tiny with no street lights or pavements so when I go to the pub, it is totally black. So I have got disco lights on my wheelchair and I flash my lights so everyone knows I am coming. I have a power-assisted electric wheelchair and it rises up when I am at the bar so I am not talked down to which means a lot.
I go to Montana in the United States every year for fly fishing and have done so for the last 15 years and am still planning to do that next September if I can. My daughter Claire lives in Australia and Lucy lives in Texas and we are still visiting them and my condition is not stopping us flying. You have to try and be positive about the situation as there is always someone worse off than you.”
Tony says the speech therapy has helped him immensely and his voice is currently stable, but a bit slurred. Tony said: “I feel useless at most things and I can’t move but doing the voice banking has made me feel I am doing something and I am now encouraging other people to do it. The important thing for me is that it will make a huge difference to me in the future when my voice has gone and I can’t get it back. I will still be able to talk to my grandchildren and they will be able to recognise it as grandad’s voice and not just a robotic voice or a stranger’s voice.”
Since Tony banked his voice, a few other people in the East Lancashire area have done the same.
Speech and language therapist Rhiannon Evans said: “Being able to still use your own voice when the time comes that you lose the ability of speech gives a personal touch that you don’t get with a synthetic voice. It is also comforting for family members too, to hold on to something so personal. Tony is an inspiration as he is very positive about things and is giving up his time to raise awareness despite everything he is going through.
“He is a vivacious and outgoing person who is doing all he can and not letting his diagnosis get to him.”