Northern Ireland news

Motor Neurone Disease sufferer Raymond Hill on his 'journey of memories'

"If you met me in the street you wouldn't know I have MND." Motor Neurone Disease sufferer Raymond Hill speaks to Social Affairs reporter Claire Simpson about making memories with his family a year after his diagnosis

Motor Neurone Disease attacks the nerves, leaving those affected unable to walk, talk, eat and ultimately to breathe

Raymond Hill first became worried about his health several years ago.

A keen sportsman, he noticed in 2018 that his legs and left arm had begun to lose muscle.

"I took a couple of falls and I knew that was strange for me," he said.

Initial blood tests and scans did not show any issues.

However, after his GP reviewed his case he was referred to a consultant in the Royal Victoria Hospital in Belfast.

Following further tests, his consultant told him in May last year that he had Motor Neurone Disease (MND).

"He asked me how much I knew about MND. I only knew of (former rugby players) Rob Burrows and Doddie Weir who have it," he said.

"He said 'Raymond, I regret to tell you this is terminal and there's no fixing this'."

Mr Hill, from Larne, Co Antrim, is one of around 84 people in Northern Ireland with the incurable disease.

MND attacks the nerves, leaving those affected unable to walk, talk, eat and ultimately to breathe. Most sufferers die within two years of receiving a diagnosis.

Mr Hill suffers from a form of the disease which progresses slowly.

A year on from his diagnosis, he gets tired more often, feels the cold more acutely and has noticed greater muscle weakness. But his speech has not yet been affected.

"If you met me in the street you wouldn't know I have MND," he said.

The grandfather said he initially found it difficult to come to terms with his diagnosis.

He said when he told his wife Lynda (60) he "fell to pieces".

"Emotionally I was a wreck," he said. "We were both devastated."

Telling his children Andrew (37) and Patricia (32), who were both living in England at the time, was hugely difficult.

"It broke my heart telling my family," he said. "They couldn't comprehend it."

However, Mr Hill said meeting his care team "gave me reassurance that I'm not on this journey on my own, that there is a team of people there for me".

He sees a leading expert in MND, Professor Karen Morrison, every four months.

"The Motor Neurone Disease Association in Northern Ireland have been incredible," he said.

"They have signposted me to all the services. They have get-togethers where I meet similar people.

"They have supported me. I have worked on many, many committees and the MND Association have really impressed me with their work ethic."

Mr Hill will take part in 'voice banking', funded by the association. He will record several phrases which will later be combined to create a synthetic voice for use in a speech-generating device.

"They tell you things to read out but you also have up to 300 sentences of your own that you would like to say," he said.

"I keep my oldest grandson Matthew going about football all the time so I'll have a few football sayings in there, if and when it's needed.

"Just knowing that your own voice will be banked is brilliant."

Mr Hill said he remains "quite upbeat".

"I know friends are uncomfortable talking to me about it so my coping mechanism is to be upbeat and make a wee joke," he said.

He has plans to make alterations to his house, including widening door frames, building a bathroom extension and making enough room for a wheelchair.

Mr Hill has also decided to take part in medical trials to help other MND sufferers in the future.

"I would love it if I could help someone else," he said.

He said his family are now "on a journey of memories".

"I have a second chance to make more memories with my grandchildren, with my wife and son and daughter," he said.

This year, he aims to take a ride in a hot air balloon and visit Canada and several countries in mainland Europe.

He and his "incredible wife", who were born in the same hospital and placed in cots beside each other, are also planning a big anniversary party.

"We went to school together," he said. "I kept asking her out and she kept refusing. Eventually after about four or five years I wore her down.

"We're 40 years married this year. The plan was always to have a big 50th wedding anniversary. That's not going to happen because I'm not going to be here. We're going to have a big party for our 40th this year."

The MND Association has launched a manifesto calling on political parties in the north to commit to improving the lives of people affected by MND in the next Stormont mandate.

Sian Guest, the association’s public affairs manager, said sufferers and their carers need the correct support.

She said MND sufferers in the north "do not have equal access to timely diagnosis and specialist care".

"Given that the life expectancy of someone diagnosed with MND is one to two years, it is essential that they are afforded timely and appropriate care to ensure the best quality of life possible in the face of what is a devastating disease," she said.

"Many people with MND become trapped in their homes without the necessary adaptations being carried out in a timely manner.

"The MND Association believe that the next executive should ensure that those who need housing adaptations are prioritised to ensure safe and accessible homes for people living with the disease."

The association also wants better support for carers.

"A recent survey revealed that 33 per cent of carers spent more than 110 hours a week caring, yet almost half of those received no benefits at all," she said.

"The next NI executive needs to urgently review the carers' strategy and ensure that the HSC Trusts are fulfilling their duty to offer all carers a carers' assessment."

Mr Hill urged people to donate as much as they can to the MND Association.

He added: "I watched the Rob Burrows story and it broke my heart. (But) we have different stories and different endings. Someone has a plan for me. I just don't know it yet."

For more information on MND services and support in Northern Ireland visit www.mndani.com.

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