Belfast Telegraph

Friday 31 October 2014

Trapped in his own body

Ulster DJ talks about her father's death

FOR first-time mums, showing family members a scan picture of their healthy unborn baby is a moment to treasure, but for Downtown Radio Breakfast Show presenter, Caroline Fleck, the memory is tinged with sorrow.

FOR first-time mums, showing family members a scan picture of their healthy unborn baby is a moment to treasure, but for Downtown Radio Breakfast Show presenter, Caroline Fleck, the memory is tinged with sorrow.

For, as the young woman pointed out her son's face to her father, they both knew that a cruel disease would deprive William Fleck of the chance to meet his grandchild.

Although little Jack is now six-years-old, the memory of her father's death has led the rising radio star to become involved with the Motor Neurone Disease Association, a charity dedicated to providing vital assistance for sufferers and their families.

Motor neurone disease is a horrific and always fatal disease of the nervous system.

It attacks the motor neurones, which send messages from the brain to the muscles.

As the motor neurones die, the muscles weaken and stop working, eventually paralysing the body.

Although heartbreaking to recall, Caroline, (31) has spoken candidly to Sunday Life about her father's death, in the hope of raising awareness of the illness that effectively "traps people in their own bodies".

"Looking back, I realise that dad was suffering symptoms for quite a few years," says the 31-year-old.

"He was in his late 40s, when I started to notice that he was walking in a peculiar way, and stumbling a bit.

"At that time, I was living in Belfast, working as a cardiac nurse in the Royal Victoria Hospital, and would only have got home every three weeks.

"I also noticed that he was losing a lot of weight.

"At first, I thought this was great as Daddy was a big man, but as the months went on, I realised that there was something very wrong.

"He was worried himself, especially when he starting to lose dexterity in his fingers.

"Dad had also been suffering from constant pain in his legs for many years before that, and he and mum had gone to numerous GPs to try and find out what was wrong.

"There isn't a specific test that can diagnose motor neurone disease, and it was only diagnosed when he was referred to a neurologist."

The diagnosis and the realisation that he was going to die, had a terrible effect on William's physical health, and while the life expectancy after diagnosis for most sufferers is between two and five years, William Fleck died nine months later, aged only 55.

"Dad took it very badly," continues Caroline. "He didn't want to talk about it and we, as a family, didn't openly talk about it - which we probably should have.

"My mum is a nurse, and she found it very difficult as well.

"I think when you work in the healthcare sector and illness affects somebody so close, you become very clinical and can't accept what is happening.

"For a long time, we were in denial. I think my dad just gave up.

"His symptoms became very advanced, very quickly.

"He knew that there was no cure, that he was going to become trapped in his own body, and he knew that he was going to die."

Although her father's death is still hard to talk about, Caroline hopes that her story will raise awareness, and encourage more people to support fund-raising events, the proceeds of which will go towards finding a cure and making day-to-day life easier for sufferers.

"Dad's decline was terrible to watch. His legs became so weak that he needed crutches and then, a short time later, a Zimmer frame.

"I found it so hard to watch, he wasn't an old man.

"Dad was very proud and he found it very hard to accept help from us.

"His arms then weakened, and he lost the power of those as well.

"The worst part of motor neurone disease is that the brain is not affected, and the person is aware of what is happening to them and terrified of what is going to happen next.

"Dad's speech was the next thing to go, and he was soon unable to communicate at all.

"At the end, my dad was completely disabled. He was unable to swallow and then the motor neurones that control the respiratory systems weakened as well, and he slipped into a coma, from which he never recovered."

In the latter stages, a heavily-pregnant Caroline and her brother moved home to help their mother, who at that stage was the main carer, therefore enabling William to pass away peacefully in his own home, surrounded by his family.

"It was very upsetting, but I knew I had to keep myself going for my baby's sake," says Caroline, "and we had tremendous support from local health services.

"My mum is an inspiration to me. I don't know how she managed to keep going, and keep encouraging my dad. She smiled and praised him every day.

"At the very end, we were all there and mum just held him and told him that it was alright for him to go.

"She was left living on her own. They were childhood sweethearts, he was her first boyfriend, and suddenly it was all gone.

"She was very angry at the disease for taking away her husband.

"When my son was born, a few months later, it gave her a reason to carry on. But even now, she still finds it difficult.

"There are moments when I get angry myself.

"Dad was a young man. He should be here, going out and playing football with his grandson, and all the things that grandparents do.

"I had my second scan shortly before dad died, and one of the last things I did was show him the picture.

"You could see Jack's face clearly and dad tried to smile, so I knew he knew what it was.

"But then I saw a tear trickling down his cheek.

"And I knew that he also knew the end was near, and he would never get to see the baby in the picture.

"There was nothing he could do, he was trapped in his own body and there would never be any escape."

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