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Barry tells of living with motor neurone disease for 11 years

Barry Ashfield, an Interserve Healthcare service user, has recently spoken to the Hull Daily Mail about his experience with motor neurone disease. Barry and the Hull Daily Mail have kindly allowed us to share the story on our website.

A man living with motor neurone disease for 11 years told today how he takes one day at a time as East Yorkshire's longest survivor of the illness.

Barry Ashfield was diagnosed with motor neurone disease (MND) in 2006, although he believes he started developing signs of the condition watching the 9/11 attacks in New York unfold on the internet in 2001.

Now unable to speak, walk and even sit in his chair, Mr Ashfield has spent the last two years in a hospital bed in his living room, overlooking the garden of the home he shares with wife Trudy in Hessle.

He relies on £15,000 EyeGaze technology, funded by the NHS, to communicate with his family, round-the-clock carers and the outside world and using his eyes to type the words he can no longer say.

Mr Ashfield told the Mail: "The life expectancy for MND is two to three years so I'm lucky to still be alive.

"They're cliches but I take one day at a time and keep my brain active. If you don't use it, you will lose it."

Mr Ashfield, 71, led a full and active life, travelling to his holiday home in Spain with wife Trudy regularly and holding down a busy job using the internet to source equipment for the oil industry.

He was at work when terrorists flew planes into the Twin Towers in 2001 and was watching the horror unfold over the internet.

"I was holding the phone with left hand and mouse with right hand," he said. "My left arm quickly became tired and I had to keep putting it down.

"A neurologist at HRI told me the weakness in my left arm might be MND. I said 'Ok, what is the treatment?' But he told me they needed to do some tests first."

With MND, the diagnosis is difficult as there is no definitive tests and doctors, instead, have to rule out other conditions and diseases first.

He underwent an MRI scan, a lumbar puncture, breathing, blood and nerve tests before he eventually learned he had MND 11 years ago.

Mrs Ashfield, 65, said: "I hadn't gone to the hospital with him to get his results and he just phoned me to say it was MND. I'd no idea what it was. When I found out, I couldn't believe it."

Despite the devastating diagnosis, Mr Ashfield continued working and when his illness meant he could no longer drive, his employers arranged from him to work from home.

He only retired five years ago, at the age of 66.

Mrs Ashfield said: "He's just so determined. He would never give in."

The couple, who will celebrate their 30th wedding anniversary this year, continued to live life to the full.

Three years ago, Mr Ashfield developed pneumonia and had to be rushed to Hull Royal Infirmary.

Mrs Ashfield said: "I took him in and he could walk and talk. But when he came out six months later, he couldn't do either."

With a tracheostomy tube fitted to help him breathe but robbing him of his speech, Mr Ashfield returned home and now receives round-the-clock care from his wife and carers.

Mrs Ashfield said: "It's hard to have someone in your house all the time but you get used to it. The girls are very good and will leave the room when I need to have a private conversation with Barry, usually to tell him off for something. We still argue, just like we always did.

"But it is hard because this is not the future we planned. It was hard giving up the house in Spain because that's where we planned to retire.

"I don't think about the future, just today. Barry is still as determined as ever and we just take it

Mr Ashfield said the hardest part was giving up their home in Spain.

"We lived in Antequera up a steep hill and I struggled to climb the hill," he said. "We had many Spanish friends and I spoke quite a bit of Spanish. Now, I can't speak at all, which is very frustrating."

The bond between the couple has been strengthened by Mr Ashfield's illness, although it has changed their lifestyle. Aware of the impact on his wife, he uses his EyeGaze to book her holidays with friends so she can get a break.

He surprises her and carers by picking out songs with their names from his music catalogue.

"Sometimes, I'll be sitting here and Meat Loaf will start blaring out," says Mrs Ashfield. "That's just Barry."

Mr Ashfield said: "The high point for me is that Trudy has stayed with me. During this, she has transformed herself from relying on me for everything to a strong-willed, assertive person who I rely on for everything.

"I was lucky when I came home from hospital three years ago and got the Eyegaze. It's my rock and everyone in my situation should have one.

"I can't move my arms so I do everything using my eyes, email, eBay, Facebook, TV, Netflix and to speak to my carers."

He's also used the technology to make a DVD of his 94-year-old mother's life, recounting her stories of Hull's fishing history and its experience during the Blitz.

Mr Ashfield said: "To other people facing an MND diagnosis, I'd say the best thing is to communicate with other MND patients. Google 'MND patients in hull' and this will show support groups and advice.

"I am lucky to have slow progression as some people only survive a year."

To view the original article, please visit the Hull Daily Mail: http://www.hulldailymail.co.uk/hessle-dad-barry-ashfield-tells-of-living-with-motor-neurone-disease-for-11-years/story-30179266-detail/story.html





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