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Northern Ireland has one of the highest rates of multiple sclerosis in the world, yet relatively little is known about the disease.

Published 14/11/2012

AP Maginness talks to two patients about their experiences of living with the debilitating condition and finds out how local charity Action MS helped them to battle the illness




AS a resigned Davy Telford talks about his illness you can see his hands shaking - he sits awkwardly in his chair with his left leg limply twisted against the floor.

It is a cliche but listening to him talk about multiple sclerosis you wouldn't think there was anything wrong with him - except, of course, there is.

He is in constant pain, his muscles spasm at regular intervals and he is continually fatigued.

In short, the 46-year-old Belfast man has been ravaged - both psychologically and physically - by 16 years of living with multiple sclerosis attacks.

During an MS attack the myelin sheath in the spine, which covers the nerve, becomes inflamed and disrupts messages passed along the nerves.

Consequently, some parts of the body will not work as efficiently and sensitivities such as touch may be affected.

Davy, a father-of-two vividly remembers his first MS attack, all those years ago.

"It was about two weeks after I got married and I was in Donegal for a fishing trip," he says.

"We started fishing as usual but as we started I felt like I had no coordination at all.

"My mate was looking at me as if I was messing around or drunk.

"As we went on my mate just came out with it and accused me of being on the drink.

"He said: 'I can't believe you have started already - what are you like?'

"It was awful because I couldn't coordinate anything and there were fish going for the fly all the time. I couldn't hit anything. We decided to leave."

Worse was to come for Davy.

"On Monday morning I woke up, got out of bed and fell on the ground," he says.

"I had lost all the power on my left-hand side. I called for the doctor and he called an ambulance," Davy says.

It took a further five years of tests for Davy to be officially diagnosed with MS.

"It was a very frustrating time - very annoying," he says.

"You had different things, different possibilities coming at you.

"One minute they are saying that the CT scan showed up a shadow - that might mean a brain tumour - and then later it's not a brain tumour.

"Back and forward with different diagnoses."

The cause of MS is not yet fully understood but it is thought to be a combination of environmental and genetic factors.

One theory is that some people have certain groups of genes that make them more likely to develop MS. It may be that an external factor, such as a virus, triggers a reaction in those with a genetic predisposition, causing the immune system to malfunction and attack its own myelin.

The onset of Davy's MS was swift, unannounced and brutal - an experience which Fintan Harvey (30) from Pomeroy, Co Tyrone can relate to.

"It started with pins and needles and then a numbness," Fintan, a married father-of-one, says.

"It is hard to describe but it felt as though I was walking on air.

"Then I started to fall a bit because I was feeling so weak.

"I went to the doctor and they were thinking that I had a trapped nerve or something along those lines."

After numerous tests and scans Fintan was diagnosed with MS at the age of 28.

"It hit me really hard and my first thought was that I would soon be in a wheelchair. Of course that isn't the case with MS - 85/90 per cent don't end up in a wheelchair," Fintan says.

Like Fintan, Davy had pre-conceived notions about the illness when he was first diagnosed.

And, for both of them, it was too much to face head on.

"I became like an ostrich - I went into complete denial.

"It is hard to explain how that happens - you just try to ignore things. It took me five years to come out and say, 'I have MS,'" Davy says.

Eventually Davy did acknowledge his illness.

"I was at a Stitch and Craft event in the King's Hall - my wife loves that sort of thing - I was just wandering around and I saw the Action MS stall.

"I picked up a leaflet and the lady on the stall asked me why I wanted it.

"I told her I had MS and she said: 'That makes two of us.' We just got talking after that.

"Within two days there was a big brown envelope full of information about MS and the charity.

"I have been involved ever since and now I am on the organising committee," Davy says, laughing.

Both men speak of the distress and fear they felt when first being diagnosed with the illness.

"You go into panic mode when you first hear that you have MS - you immediately think: 'That's me. I'm finished,'" Davy says.

Fintan adds: "I hadn't a clue about MS. There was one woman in Pomeroy that had it and she was in a wheelchair so I assumed that was where I was going."

Both men feel that their lives have been changed immeasurably by the help that Northern Irish charity Action MS provided.

"Action MS grabbed me by the neck and pulled my head out of the sand," Davy says.

"They showed me that there are people out there that can help, that there are people feeling the same as me and a lot worse," Davy says.

Fintan, who has struggled with depression since being diagnosed with the illness, has similarly high praise for what Action MS did for him.

"When I met Anne [Walker, founder and head of Action MS] for the first time it was a life-changing experience. She is a remarkable woman.

"People talk about a positive mental attitude and that is hard to do. But when you spend time with Anne you see how that really works.

"She is amazing. You just couldn't be depressed around her.

"She lifts you up - she makes everyone around her feel a lot better. I don't know what how she does it but she makes things seem a lot brighter," Fintan says.

Despite the help of Action MS and the availability of new medicines the stark reality is that these two men like the 4,000 MS sufferers in the north will be battling the illness for the rest of their lives.

"It is very easy to get down," he says. "Depression is a big part of the illness. You are in a lot of pain a lot of the time, you can't do much because of the muscle fatigue and then there are the spasms as well. It is a constant battle every day.

"People will often say when they see you out: 'You look great. You wouldn't think that you had MS.'

"But if only they could see it through my eyes," Fintan says.