The wife of an Enniskillen man with a lesser-known terminal illness is speaking out to raise awareness of the disease which has greatly impacted both of their lives.

At 55 years of age, in October 2016, Brian Fee’s life was turned upside down when he was diagnosed with Huntington’s Disease (HD) – an inherited disease with symptoms causing a progressive loss of control over thoughts, feelings, behaviour, movement and communication until the person requires 24-hour care.

Now aged 60, Brian receives care from his wife, Maggie, as they face his disease as a team.

Speaking to The Impartial Reporter, Maggie described HD in her own words.

“Huntington’s is MS, Alzheimer’s and Parkinson’s all rolled into one. Now, if I say to people, ‘Brian’s not well, he has Huntington’s Disease’, [they ask] ‘What’s that?’

“An awful lot of people, they just haven’t [heard of it before].

“I was out with a friend and she’s a nurse and she was talking about Brian. She knew Brian very well because he worked his whole life in SD Kells in the town.

“She said, ‘You know what, Maggie, I’ve learned more about Huntington’s in the last half hour from talking to you than from my whole nursing career,” said Maggie, highlighting how many people are unaware of the impact of HD.

On the advice of his doctor, Brian took the HD test, believing that he didn’t have it but just to be sure, as four out of his 13 siblings had previously been diagnosed, two of which have since sadly passed away from the terminal illness.

“[Brian] said, ‘Maggie, I was 100 per cent sure I didn’t have it, that’s why I went for it’,” said Maggie, adding that they were both in shock when Brian received his diagnosis.

“It’s so sad because he was so used to being out working his whole life and meeting people. He just loved the chat in Kells’s.

“All of a sudden that just came to a halt,” said Maggie, explaining that a few months after his diagnosis Brian gave up his job. She also gave up her job to take on the role of his primary carer.

“It just changed our lives so much,” she added.

Explaining how HD affects Brian, Maggie noted how his concentration and balance are greatly impacted.

“I can’t ask Brian more than one question at a time because his brain won’t function for two or three questions at a time.

“His balance, people think he’s drunk,” she added, noting that he is also very forgetful and is a fall risk, as “it’s a wasting of the brain and the nervous system”.

She added: “I don’t think people realise how serious an illness it is – it kills you.”

Maggie is very grateful for all of the “fantastic” support that they have received from both of their families and their close friends: “Only for them I couldn’t have got through it.”

The couple also joined the Omagh Huntington’s Disease Association.

“They meet once a month [pre-Covid times] and it was the best support we ever had,” said Maggie, noting how it has been comforting to meet other people on a similar journey as them.

Maggie also noted that since his diagnosis, Brian has joined his local Men’s Shed at Drumcoo where he gets great enjoyment from being able to socialise with others.

“The friends he has met up there have been brilliant. He loves it,” she said, noting how it gives her “a wee break” as well.

According to the Huntington’s Disease Association Northern Ireland, HD is hereditary, and every child conceived naturally to a parent with HD has a 50 per cent chance of inheriting the disease.

This is a fact that greatly concerns both Maggie and Brian.

“I have a son and a daughter, and seven grandchildren. My son and daughter haven’t got tested for it but it’s just a toss of a coin whether they have it or not,” said Maggie.

Coming to terms with her husband’s illness and what the future will hold, Maggie is very aware that Brian will continue to deteriorate, as there is no known cure for HD.

“He will be in a wheelchair. His whole muscles, in his legs and arms and his swallow – his muscles in his throat will go. His food is going to have to be liquidised for him. I’m hoping that’s a long way down the line,” she said.

“Brian knows what’s ahead of him. He’s watched his brother at 42 go through all that, so he knows exactly what’s ahead of him.

“I love Brian and I’ll be here until the end, but it is very tough,” Maggie told this newspaper.