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How Coleraine man Alastair McAfee's 'world began to shrink' with multiple sclerosis diagnosis

The MS Society says it now believes in the near future treatments will be able to halt the progression of the disease. Alastair McAfee, from Coleraine, tells Lisa Smyth how a diagnosis dramatically changed his life

Brave battle: Alastair McAfee and his wife Gillian
Brave battle: Alastair McAfee and his wife Gillian

By Lisa Smyth

Multiple sclerosis is a progressive neurological condition which damages nerves and makes it harder to do everyday things, like walk, talk, eat and think.

However, in a major announcement made today, the MS Society has said it can finally see a time in the near future where treatments will be available to halt the progression of the disease.

Alastair McAfee (53), who lives in Coleraine with his wife, Gillian, also 53, has MS and is taking part in an MS Society advertising campaign aimed at raising the £100m required to carry out the research necessary to help MS patients around the world.

Alastair McAfee normally gets up around 5am every morning.

Not because he has an early start at work - he left his job in newspaper advertising almost 10 years ago.

Instead, he wakens early every morning with his legs in spasm and the only way to ease the pain is by getting out of bed and walking around.

Even that, however, is a challenge.

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He uses a walking stick to get around his house and if needs to go any distance at all, he relies on a mobility scooter.

Despite the difficulties he faces on a daily basis, Alastair doesn't complain as he believes he is relatively lucky.

This is because, when he was just 33-years-old, he was diagnosed with MS in a moment he describes as "world-ending".

Alastair McAfee
Alastair McAfee

"The first image that popped into my head was that of a wheelchair," he says.

"The only thing I knew about MS was that people with the condition use a wheelchair and I just assumed that was what was going to happen to me."

Like many people with the condition, Alastair experienced symptoms for many years before getting a diagnosis.

However, it was only when he lost his sight suddenly that he was referred for specialist tests.

He adds: "I was diagnosed when I was 33 but they think I probably had MS from I was 26 because there were things happening to me over the years.

"I was going to the doctor but they weren't able to pin it on anything, although they did put on my notes that I was showing the signs of MS.

"The doctor didn't mention it to me at that stage, though.

"Different things were happening to me, I was dropping cups and my balance was off as well.

"It's hard to describe, but it was as if I was drunk without being drunk.

"I wasn't actually conscious of the problem with my balance. My wife, Gillian, was more conscious of it.

"We would be walking along and I was bumping into her.

"She mentioned it to me, but to be honest I actually blamed her for bumping into me instead of the other way around.

"It wasn't happening every day, it was more like every so often. But it went on for about seven years and then in 1999 I went blind. I went to bed and my eyesight was fine, then I woke up the next morning and I noticed that my eyesight wasn't as crisp.

"I went on to work anyway but it got worse throughout the day until I went completely blind and Gillian came and picked me up and took me to the doctor.

"The GP sent me straight up to the hospital in Coleraine and I lay in there for about four days.

Alastair McAfee
Alastair McAfee

"They didn't do any tests, in fact, the doctors kept coming around and bringing their junior doctors along to see me, telling them that they wouldn't see a case like mine very often.

"My eyes were dancing in my head, as much as I couldn't see, they just wouldn't sit still."

The doctors weren't able to work out what was wrong with Alastair and he was eventually discharged home without answers or hope of recovery.

He says: "I hadn't a clue what was wrong, so it really was very scary.

"I had no idea why I couldn't see, I had no idea if my sight would ever come back and I kept worrying about how I was going to pay for my mortgage.

"I was most worried about the bills."

However, as quickly as Alastair's eyesight disappeared, his vision suddenly returned.

"I went to bed one night and when I woke up the next morning I could see," adds Alastair.

"It was like it had never happened.

"Of course, I was so relieved I could see again but I was also confused about what had happened in the first place."

In the meantime, Alastair had been referred to the Royal Victoria Hospital in Belfast and he eventually underwent a series of tests, including an MRI scan and a lumbar puncture, which finally shed light on the range of symptoms he had been experiencing.

"The neurologist came around and asked if I had been given any idea of what might be wrong with me," he says.

"I told him that my own doctor had said I was showing signs of MS and he said, 'To be honest with you, that's what you have'.

"Then he told me I could go home at any time.

"It was as blunt as that and I didn't know where to turn.

"It was world-ending, I knew so little about the condition and I was in a ward in the Royal where most of the patients had MS or were showing signs of having MS.

"The guy lying opposite me was very bad with MS, he couldn't walk or talk, so that's when it became really scary.

"I just thought to myself that I was going to end up like that, but of course, now I know you should never compare yourself to anyone else because it affects everyone differently."

Alastair was diagnosed with relapsing remitting MS, which is how the disease begins in most patients and is when people have attacks of new and old symptoms for a number of weeks before a period of recovery.

He began treatment to slow down the progression of the disease and this has been effective, but there is no doubt that his life has been affected as a result of MS.

He has since been diagnosed with primary progressive MS, where symptoms gradually get worse over time, rather than appearing as sudden relapses.

He was also forced to leave work a decade after finding out he had MS and while he does not use a wheelchair, his mobility and balance have been adversely affected.

"I just couldn't stand and have a conversation with someone. If I stand for any length of time my legs start to shake," Alastair says.

"I also have a strange sensation on different sides of my body, so I can walk into the bathroom and switch on the tap and put my left hand under the water and it will feel okay, but if I put my right hand under the water it would feel like it's burning the skin off.

"It's like someone has cut my body down the middle.

"The fatigue I experience is also terrible, it's a really big problem and I have to lie down for three hours every afternoon just to get myself through the evening."

It is as a result of his own experience of MS that Alastair is determined to help reduce the impact on others.

He is chairman of the MS Society's support group in Coleraine and is also taking part in a UK-wide campaign urging the public to assist the charity in its efforts to find treatments that will halt the progress of the disease.

In an incredible declaration offering hope to hundreds of thousands of people around the world, scientists have said they believe MS could be stopped, with a range of treatments for everyone with the condition in late stage trials by as early as 2025.

This revelation follows a series of discoveries which have led researchers to believe treatments that stop disability progression - and potentially prevent the need for a wheelchair in the future - are now a possibility.

The MS Society today launched a major appeal and is aiming to raise £100m over a 10-year period to accelerate new research and stop MS in its tracks.

David Galloway, director at the MS Society in Northern Ireland, says: "People with MS tell us that want a real focus on research.

"There has been significant progress in the last decade that has got us to a critical point.

"We can now see a future where nobody needs to worry about MS getting worse.

"That could mean not living in fear you'll be reliant on a wheelchair, or one day lose your independence.

"It's fantastic to see the worldwide MS community coming together to help us achieve our ambitious goal to stop MS.

"We need to act now, there is a real opportunity to be grasped and people with MS can't simply wait."

Alastair adds: "MS affects people in different ways, there are some people who are in a wheelchair six months after they are diagnosed but I've had it for 20 years and the chances that I'll end up in a wheelchair are probably slim.

"At the same time, from the moment I was diagnosed, my world began to shrink.

"My job, my car, my ambitions - over 20 years, MS took them all away.

"And now those links are broken, I do all I can to stay connected.

"My laptop is my lifeline. Through it, I can still help my local support group and see the progress being made towards stopping MS.

"It's clear that one day soon, no one will have to go through what I have, to adapt like I did, and if I can do anything to help bring that day closer, I will."

To donate to the Stop MS Appeal or for more information, log on to www.mssociety.org.uk/stop, or text FUTURE6 to 70800 to donate £5

Understanding condition and symptoms

More than 4,500 people in Northern Ireland are living with MS.

It is a neurological condition and it happens when the immune system isn't working properly.

The immune system normally protects the body by fighting off infection, but in MS it attacks the nerves instead.

In the UK people are most likely to find out they have MS in their 30s, 40s and 50s but the first signs of MS often start years earlier.

As MS affects everyone differently, there are a range of different symptoms, including tremor, speech problems, pain and spasms, difficulty swallowing, bowel and bladder problems, issues with memory and thinking.

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