IT is something many people take for granted – the ability to tell the people who matter most that you love them.

But the heartbreaking reality for thousands of motor neurone disease sufferers is that they will be robbed of not only the ability to move – but also to talk.

But one inspirational mum Annie Allen who has the incurable disorder is determined that nothing will silence her – or ever stop her telling her 13 year old son she loves him.

Voice banking, the ability to record a personal voice which can be later used so someone who can no longer talk is able to communicate through technology, is not currently available on the NHS.

However Dorset is the first place in the country to make it possible thanks to the tireless work of fundraisers.

Today Annie has selflessly spoken out about her devastating diagnosis in order to help others and to highlight the organisation that changes lives.

Annie said: “Losing the ability to speak will affect everybody with MND at some point.

“I want others to know about voice banking because if I’d have left it just that bit longer, I feel it would have been too late.

“I need my voice. It is me. It is my identity and it is a comfort to those left behind as well.

“Now I know that when my voice does go and I have to rely on a computerised voice, it will still be me and my personality and that is a huge comfort.”

Annie, from Canford Heath, first noticed her health began to deteriorate in April 2016.

She explained: “It all started the night before my 50th birthday. I was chatting to a friend and I was thinking: ‘Hang on a minute, something isn’t quite working.’

“It was like my brain wasn’t communicating with my tongue.

“It started happening more often. My speech began getting slurred and I sounded drunk. When a client asked if I had been via the pub before a meeting I knew something was wrong. Eating was also starting to get more difficult.

“I asked my husband if he’d noticed anything different about my voice and he said he had.”

Annie visited her GP who referred her to Poole Hospital before a series of appointments and tests.

“The test results for treatable diseases kept coming back clear. I had done a fair bit of research, so I gradually began to realise that the one diagnosis left was MND, the one that wasn’t treatable. In a way that was a good thing because it enabled me to take in what was happening to me over time.”

It was July 13 this year Annie was told she has progressive bulbar palsy, a type of motor neurone disease where the muscles first affected are those used for talking, chewing and swallowing.

Motor Neurone Disease (MND) is a rapidly progressing disease that affects the brain and spinal cord. It attacks the nerves that control movement so muscles no longer work leaving people ‘locked in’ a failing body, unable to move, talk and eventually breathe.

“My first thought of course was my son, not being here for him as he gets older and to support him,” Annie said.

“All my thoughts were about him.

“However I have always been quite pragmatic.

“There is nothing I can do about it so I have to deal with it the best I can and make time count now.”

For Annie, it was actually telling loved ones that was the hardest.

“When it is happening to you, it’s a hand you have been dealt and so you have to deal with it.

“If it was happening to someone else though, I know I would feel a billion times worse because you feel totally out of control and helpless because the reality is there is nothing you can do.”

Annie, who is a partner in a successful graphic design business, said: “I didn’t know how to come out and tell friends.

“Personally I wouldn’t know how to react and I would feel terrible if someone told me something like this face to face, so I put it out by text. I said that I was fine and that it wasn’t a surprise.

“I believe I am quite slow progressing, so long may that continue because I have read there are cases of people with the same condition losing their voice within a month and in a wheelchair within four months.

“I am determined to keep strong.”

That strength has been fuelled by the comfort Annie has received from recording her voice before it is lost forever – and the support from the charity MND Association.

Stephen Hawking, who has MND, has one of the most recognisable computerised voices – but it is only one of a handful of generic voices available to people with the condition once the ability to talk goes.

That is no longer an issue though for people in Dorset.

Thanks to a generous grant from the MND Association East Dorset and New Forest branch, four community speech and language therapist teams across the county are now training assistants on how to help people bank their own voices, pay the registration fees needed as well as enabling laptops and microphones to be bought and loaned to people who want to voice bank.

It now means as soon as someone is diagnosed, they will be offered the option to record their own voice.

The project will run for 18 months and will be evaluated.

Annie explained: “It is vitally important to start voice banking as soon as possible. For a lot of people who can’t speak at all who rely on the mechanised voices, not having the chance to voice bank is their biggest regret.

“Your voice is something you take for granted. But suddenly nothing works as it used to,” said Annie who spent many hours spread over a few weeks to record various phrases to a special computer system.

The mum-of-one feels grateful to have the support of good friends and extended family but wants to share her story so others who may not feel as supported can seek help.

“I’m lucky but there are people who haven’t got that support, who may be alone, and this is where the MND Association come into their own.

“They help with anything, whether emotional, practical or financial.”

The MND Association East Dorset and New Forest branch is currently appealing for Association visitors, volunteers who receive training to provide emotional support on a one-to-one basis as well as signposting to various services that people need.

Annie said: “It is inevitable what will happen to me but very reassuring that the support of the MND Association is there.

“I’m starting slowly to notice the changes but I don’t think it has sunk in just yet. I’m getting very tired and my concentration isn’t quite what it used to be. I can’t hold heavy things such as a full kettle and my legs ache.

“I know the disease will make me gradually paralysed and that I will probably only be able to move my eyes.

“As the disease progresses, the Association supports you every step of the way and fights your battles for you.

“You can be honest with them, without holding back, which you perhaps do with loved ones.

“I feel so happy my voice is recorded and now it is all about making memories and raising awareness and funds for the charity.

“That is my way of getting through this. The more I am silenced, the louder my voice can be.”

**For more information about becoming an Association visitor for the local branch of the MND Association or to support the voice banking programme, go to or the local branch at

**Annie has urged members of the public to take part in the MND Association’s Silence Speaks event.

The campaign is challenging people to stop talking and find other ways to communicate during October to stand in solidarity with the thousands of people living with MND who have difficulty speaking.

For more information and for fundraising ideas, go to