UPDATE: |’I can no longer use my arms or my legs, this is my last bit of independence’ News

“My voice is my last bit of independence – it was really hard preparing in case I lose it”

A Greater Manchester mum living with motor neurone disease (MND) has used special software to create a voice bank that will allow her to carry on speaking to her family if she loses her voice to the disease.

Anna Barrow, 40, had to record herself saying 50 random sentences into a microphone connected to her computer, which was running a special voice synthesizing software called Acapela.

The mum of three also got to record up to 300 personal phrases including her daughter’s names and “most importantly” swear words, SWNS reported.

She speaks through the software using an eye-tracking system on her iPad, which is connected to her wheelchair.

Anna said: “I like to talk a lot – my voice is my last bit of independence – so it was really hard preparing in case I lose it.

“I can no longer use my legs or my arms so speaking is extremely important to me.”

Anna first noticed symptoms of MND in March 2021 but doctors told her it could be nerve damage from having her Covid jab too high up in her arm.

A social worker at the time, Anna was told it should get better in the next 18 months, but her symptoms progressively got worse and the loss of sensation spread across her body.

She was then urgently referred to a neurology department but was told that there was a 71-week waiting list.

While waiting for an appointment, Anna was in a work meeting when she realised she was struggling to breathe and swallow, which prompted her to go to A&E.

After a two week hospital stay and numerous tests Anna was diagnosed with MND, in May 2024.

Anna said: “They had kept me in hospital and were doing loads of tests, so we knew it was potentially not going to be good news.

“During my job I had worked with a few people with MND but they’ve all been male if they’re younger. I knew it was a possibility but with my age and being female, I just didn’t think it would be that.”

Anna was given the option to start voice banking as soon as she was diagnosed, but originally put it off after feeling “overwhelmed” by the news.

The two months later Anna started the process of recording her voice with the help of Martyn, 41, her husband and full-time carer.

Martyn said: “We didn’t realise how emotionally difficult the process would be – on the tin it seems easy.

“But the more she spoke sometimes she got fatigued and started slurring her words or didn’t sound right so we would have to stop.”

Even though Anna was working alongside a speech and language therapist her voice started to change, so even before starting recording she would get “upset”.

Martyn said: “When this happened we would put it away for a couple of days and come back to it – but that prolonged the process.”

Anna finished recording the voice bank in August 2024 and it was uploaded to her iPad for her to start using the next day.

The personal words included 100 of her personal phrases, nicknames and premade sentences like ‘can I have a coffee’ or ‘can I go to the bathroom’.

She speaks through her synthesized voice through the Acapela app using an assisted eye tracker which is connected to her iPad.

Martyn said: “All Anna has to do is just hover over the word she wants to say for 1.5 seconds and it replays. She much prefers to speak but mainly uses the system if she is having a bad day or if she is tired.”

It cost £250 for an annual subscription to the service but this was covered by the NHS Salford Care Organisation MND Association.

The UK’s largest charity for individuals living with MND, they provided £84,000 in funding for individuals to bank their voice in 2024 alone.

Anna does not know if she will lose her voice but knowing she can still talk is “comforting” to her.

She said: “I can still talk to my family and friends – have an opinion – pretty much do all the things I used to do. I can also still shout and swear at Martyn which is a bonus.”