Belfast Telegraph

Tuesday 22 July 2014

The golf club families tormented by motor neurone disease

Professor Stephen Hawking (68) has lived with motor neurone disease since the age of 21

Ahead of a fundraising event today, Stephanie Bell reports on the tragic twist of fate that led to three golfing pals dying from the same rare disease

A Northern Ireland golf club will today put the spotlight on a rare and cruel condition which has robbed three of its prominent members of their lives. In what are incredible odds, Balmoral Golf Club in south Belfast has tragically mourned the loss of three people to motor neurone disease (MND), which will be the focus of a special fundraising day.

Former Lady Captain Yvonne Mullaney (69) passed away in June this year after what is believed to have been a six-year struggle with the disease.

A couple of weeks earlier, on May 29, Alan Leggett (76), whose wife Sheila is also a former Lady Captain of the club, died after battling the condition for 11 months. Their deaths come after the loss 10 years ago of fellow golfer Freddie Boyle, who was just 56 years old when he succumbed to the terrible effects of MND two years after his diagnosis.

All three played golf together and enjoyed a close friendship.

Their deaths are all the more tragic because the incidence of the disease is so rare. Only one person in 100,000 and just 94 at any one time in Northern Ireland is believed to have MND.

Stephen Thompson, chairman of the Northern Ireland Motor Neurone Disease Association, says: “It is a very unusual disease and we don’t know very much about the cause although there have been hotspots occasionally. Research is ongoing but there is no link between golf and the disease.”

A tragic and cruel degenerative disease for which there is no treatment or cure, MND attacks the nerve cells responsible for muscle control and can leave sufferers unable to walk, talk, move and even breathe before finally taking their lives.There are a number of different strains and no way of predicting how it will develop in each person.

Most people have between two to five years to live after diagnosis, although some have been known to survive for years, most notably, world-renowned physicist and cosmologist Professor Stephen Hawking, who has been severely disabled by the disease for over 20 years.

Despite the fearful symptoms, the Motor Neurone Disease Association is dedicated to ensuring patients enjoy the best quality of life possible after diagnosis.

With its motto — ‘Life with MND may be short, but it's still worth living' — the charity supplies equipment to improve quality of life as the disease progresses.

Tomorrow, the Association will benefit from a special event at Balmoral Golf Club, which aims to not only raise vital funds but also awareness of this terrible disease.

Many local companies have supported the event. The main sponsor, Xperience, is owned by Alan Leggett, whose father, Patrick, is one of three members of the Club who lost his life to it.

In addition to the golfing competition, the event will run into the evening with a charity auction and dancing.

It is hoped locals will come along and support this poignant one-off fundraiser.

Balmoral Golf Club, tel: 9038 1514

‘The nine months he had left were blessed’

University lecturer Alan Leggett was given just a year after he was struck down by Motor Neurone Disease — but what a year it turned out to be.

A fit and intelligent man with many passions, he was firstly and foremost a family man and the love and devotion which he gave freely through his life to his wife, children and grandchildren was given back to him in spades during his last months.

It’s why, despite the pain of seeing their father gradually reduced from a fit, healthy and very able person to one who was dependent on his family for everything, that last year holds many happy and special memories for his wife Sheila and sons Christopher (48), Paul (45), Julian (39) and Patrick (44).

Patrick says: “With dad it was always family. He had two great passions, the first was his family and the other was golf.

“Every Saturday the whole family would meet up for fish suppers and everything was very much focused on family.

“The day before he passed away we had a great barbeque and every member of his family was there and he had the chance to say goodbye to all of us.”

A very fit man who often out-walked his sons on the golf course, Mr Legg-ett survived just 11 months after his diagnosis in June of last year.

In a fitting end for a man whose life evolved around his family, he died on May 29 with all of his loved ones by his bedside.

Patrick says: “My three brothers are doctors and so they knew exactly how it was going to be for dad and I went the other way — I deliberately didn’t go online to look it up or find out anything about it.

“I didn’t want to know. For me ignorance really was bliss and I just wanted to make the most of the time we had together.

“Dad never made his illness the focus. The nine months we had with him were fantastic and even though it is an absolutely hateful, hateful illness, they were blessed times.

“We were lucky in that we were able to redesign the house to cater for him by widening doors, putting in wheelchair ramps and a downstairs wet room.

“We didn’t know how long he would have or how aggressive it would be and unlike a stroke or heart attack when you don’t get the chance to spend time or say goodbye, we were privileged that we had the luxury to do what we could for him in those last months.”

While a team of carers, the MND Association and Marie Curie all rallied round to provide fantastic help and care, it was the family who ensured his last weeks were special.

“My brothers and I were fortunate to be able to each take time off work on a rota and care for him ourselves, feeding him and washing him and spending time with him,” Patrick says.

“It was a gradual shut down and at the end he was so failed you could have put your hand round his thigh.

“The last couple of months were the most frustrating for him as he couldn’t speak and had to use the alphabet to spell out what he wanted.

“What it afforded us as a family was time to prepare and so we found a positive out of a hateful disease.

“We didn’t focus on the tragedy but what we wanted to say to him. If you let it get to you, you would be in pieces.

“That year we celebrated our birthdays like nobody’s businesses.

We did stuff with dad which we never did before like watching the whole series of the Godfather together and my brother and he watched all the Terminator movies.

“We lazed around and watched the cricket and football. We can look back at dad’s passing and have smiles on our faces. Dad’s philosophy was that ‘God was good to me’ and he had such dignity and no regrets and that’s the legacy we were left.

“The association was such a support and we now hope that tomorrow’s fundraiser will help raise awareness and much-needed funds for the charity as well as serve as a fitting tribute to dad and the great man that he was.”

‘I’d love to go with dad to the club for a pint’

Watching his once very fit and active dad slowly succumb to the extreme paralysis which Motor Neurone Disease visits on people is something which will never leave Jim Boyle.

A plumbing contractor from Belfast who was passionate about golf, Jim’s dad Freddie was 54 and in the prime of his life when he was struck down by Motor Neurone Disease.

Along with his heartbroken mum Anne, sister Tracey and brothers Barry and Andrew, Jim could only stand by and watch as this merciless disease gradually robbed his dad of the power to speak, see, move and even breathe unaided.

It took just two years for the relentless disorder to do its worst and render Freddie completely helpless, before it finally took the life of a much-loved father, grandfather and husband.

Cruellest of all for the family was the awareness which remained in Freddie’s eyes right until the end. Everything but his cognitive ability had shut down.

Jim says: “It has been 10 years and I still find it quite difficult to deal with. When you see what it does to someone, especially someone who was once so active and fit, it is just horrendous.

“Even though we knew dad was going to die, we were not really prepared when it did come.

“On his last night I believe he knew he was dying. He couldn’t speak, see or breathe properly but you could see in his eyes that he knew what was going on. It was quite horrible.”

A plumbing contractor, Freddie Boyle was well known around Belfast as a main contractor for maintenance with the Housing Executive.

He and his wife Anne were both fanatical golfers and members of Balmoral Golf Club, where they not only indulged their passion for the game but socialised and met some of their closest friends including Alan Leggett, who died in May of this year from the disease, and Yvonne Mullaney, who passed away in June.

Jim says: “The three couples were very close, they played in the same golfing competitions, went on the same holidays and played golf together all over the world.

“With one person in 100,000 believed to contact the disease, it is incredible that three people who knew each other from the same golf club all got it and have died as a result of it.”

The first symptom which indicated something was wrong with Jim’s dad was the sudden loss of his ability to speak.

While rare and incurable, Motor Neurone Disease is often difficult to diagnose and in Freddie’s case it was initially suspected that his speech loss was the result of a stroke. When this was ruled out, he was advised to see a psychiatrist.

He was finally diagnosed thanks to a nurse at the golf club who was familiar with the condition and recognised the symptoms.

Jim says: “We knew nothing about the disease and we did what everybody does and looked up information on the internet and through the association.

“It was shocking. Even though you are reading the terrible effects and what it will do to him, at first you just don’t believe it will really happen.

“Especially because dad was such a big, fit and strong man, you convince yourself he will beat it but the reality is that it is not going to happen, there is nothing you can do to stop the progression of this disease which eventually eats away at the whole body.”

After a year of continuing to play golf, the disease started to progress more rapidly in Freddie’s second year and, within just a couple of months, he had become housebound.

Jim says: “The Motor Neurone Disease Association was brilliant and provided us with a lot of equipment which dad needed.

“In the last couple of months of his life it progressed quite rapidly and near the end he couldn’t feed himself. Then, in the last week, he lost his sight and couldn’t breathe.”

Even 10 years on, for Jim and the whole family it has been difficult rebuilding their lives.

Jim adds: “The golf club has been brilliant in helping mum, all her friends there have been a huge support to her and it made a big difference in the difficult months after dad’s death.

“We all miss him and even now, at 37, I would rather he be here to talk to. Sometimes I find myself feeling jealous of people who have their fathers up to their 70s, 80s and 90s and I would love nothing more than to be able to go the golf club with dad and enjoy a pint with him.”

The survivor and those who died

World-famous physicist Stephen Hawking (68) has lived with motor neurone disease, also known as amyotrophic lateral sclerosis (ALS), since the age of 21.

Hawking's form of motor neurone disease is the most protracted case ever documented, as surviving for more than 10 years with ALS is uncommon.

Having lost his ability to speak due to his illness, Hawking is often recognised by the synthesiser he uses in order to communicate.

Even though the DECtalk DTC01 voice synthesiser that he operates with his cheek has long been outdated, he refuses to get another, saying that he likes the sound it makes and identifies with it.

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Chinese Communist Party leader Mao Tse-tung lost his sight before eventually dying of the disease in 1976.

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Don Revie, who played for Sunderland, Leicester City, Hull City, Manchester City and Leeds United, and who eventually went on to become one of Leeds United's most successful managers, was diagnosed with the disease in 1987 shortly after retiring. He died in 1989 aged 61.

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World-renowned English film star David Niven (above right), who starred in such movies as The Guns of Navarone, The Pink Panther and Around the World in 80 Days, died in Switzerland in 1983 having succumbed to motor neurone disease when he was 73.

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