World MS DAY

‘It’s all about keeping in touch with the world,’ says Dundalk man living with MS

Ahead of World MS Day on Saturday, May 30, well-known shopkeeper Bobby Arthur speaks to the Democrat

Arthur’s newsagents on the Newry Road in Dowdallshill is a local institution and Bobby Arthur its venerable custodian.

For decades he has been holding court within, chatting to his loyal customers on a daily basis and chewing the fat on the local and national issues that matter most.

Arthur’s provides a welcome social and commercial lifeline - like all good local shops should.

Yet 68-year-old Bobby has been away from the shop for a number of months now. It’s simply not safe for him to darken the door right now. But there’s more to it than just being extra careful during the Covid-19 pandemic.

Bobby has Multiple Sclerosis or MS .

It has been part of his life for the past decade - more actually - but it was only in 2010 that he was finally diagnosed with the debilitating neurological condition.

Not that Bobby would see his situation as being “debilitating” - far from it in fact.

Whereas others might struggle living with such a condition, Bobby, who was a keen golfer in his day, has a remarkably chipper approach to it all. It helped that he had some, as he calls them, “inspirational” figures to turn to during the past decade.

Sadly, perhaps the most inspirational of those people passed away earlier this year. Bobby remembers his brother-in-law Tommy with real fondness.

“He was diagnosed with cancer around the same time as I was diagnosed with MS,” explains Bobby, speaking to the Democrat ahead of World MS Day on Saturday May 30. “He went through a lot of treatments and he was given months to live, but he lasted for ten years, but just in january he died in his sleep.

“He died a happy man,” Bobby adds, with a smile. “He was a great inspiration on how to deal with long term illness. Of course, the diagnosis of cancer and MS are different - he got a death sentence, I got a life sentence.

“For me MS is not something that kills you, but there are complications that can set in and the body can’t deal with and that’s what gets you in the end.”

These complications vary from person to person. It’s one of the reasons getting a diagnosis can be a long and difficult process. But right now the Covid-19 situation has heightened Bobby’s vigilance more than ever.

“The problem with MS people is that it’s our immune system that attacks the body when an MS flare-up occurs. When those lesions come on there’s a sort of a covering that the body naturally produces, but the immune system sees that as an attack on itself and our immune system actually attacks the lesions and it makes this condition worse. So we have to keep our immune systems suppressed a little bit and it’s very balanced. We are prone to infections because of that.”

He adds, with complete seriousness: “So if Covid-19 were to hit, we’d be really at risk. I’ve been cocooning and I know a few other people with the condition who take it very seriously.”

He mentions his decision to, as he puts it, “step back” from working in the shop. It was something he had been gradually reducing anyway, but Covid-19 made the decision absolute - for now anyway.

“I started stepping back last year, but up to this Covid thing I was going in and out making a nuisance of myself,” he adds with a laugh. “That was one of the ways I knew what way my condition was progressing - that you could go in and work maybe three or four hours, but over the last while that’s been down to about half an hour. I’m just not able for that anymore.

“I haven’t been inside it since early March.”

Does he see himself going back when the time is right? He ponders the question for a moment.

“It’s a strange one. Normality will be very different when we go back. If there’s a risk there at allI won’t go back to it. I can’t go back to it. Because you really don’t know where the risks occur, people are coming and going and you don’t know what they’ve been in contact with and you don’t know what they leave behind them.

“It’s not on the horizon at the moment.”

Positive

As is his positive approach, Bobby has diverted his mind to other things.

“In my state I would always have had a short-term outlook on things, so I don’t think too far ahead, so I’m not depressed that I think I won’t ever be able to do anything. I try and concentrate on what I can do and I can get out for my walk in the morning and potter around the garden. I can link up with people.

“I’ve discovered technology to a certain extent. I know what Zoom is and Whatsapp and all that sort of stuff. Which I wouldn’t really have bothered with in the past.

“It’s about keeping in touch with the world and seeing things that are going on out there and so far, so good.”

Diagnosis

Casting his thoughts back over a decade ago, what were the first signs that something was wrong?

“It would have been about a year before the diagnosis. I played a bit of golf with a few lads - well I won’t say I played, but I walked on the golf course”

“But, particularly around the greens, the lads would say ‘why are you dragging your foot? You’re leaving a mark with the studs on the shoes’ and I thought ‘I’m not dragging my leg’.

“But after a while I did notice that my gate, when I started to get tired, I was dragging the leg and I was getting tired very easily. It started from that.”

Bobby goes on to explain how initially it was thought that perhaps artritis was behind it all. A trip to the sports clinic in Santry in Dublin followed.

“He (the consultant in Santry) did the x-rays on my knee and my hip. I was in for a consultation with him one day and he said ‘I’m not happy, there’s something else going on here’.

“He said I had a wee bit of arthritis, but it’s not enough to cause the level of discomfort that I had. So he started me on the trail of the MRI scans and the lumber puncture and all of that.”

The investigation continued. Time passed.

“I was referred to Dr Moorehouse in the Bon Securs after a couple of visits and looking at scans, he sat me down one day and he said ‘look, you tell me what’s wrong with you’. And I described what was going on with the gate, some of the pains I was having, the pins and needles and spasms and eventually he said to me ‘well, how would you feel about MS?’. That was that. It just went from there.”

Bobby calls MS a “complex disease”. It takes time to diagnose for that very reason - nobody wants to rush into a diagnosis of MS without certainty.

“For me, they took their time and they got it right. And got a regime in place reasonably quickly.”

His type of MS - Primary Progressive - though, is one of the worst forms. It requires Bobby to manage it: “The challenge with my illness is to stop the progression of the illness. It’s the type of MS you don’t recover from the disabilities, you have them.”

Bobby admits that it took him time to adjust mentally and get his head around what was happening, and the impact it was going to have on, not only his life, but his family’s too.

“You go through phases of grief. There’s a certain element of that. It’s difficult to accept. Sometimes you get angry and fight back and then you don’t let it get in on you. I know it took me about three years to sort of accept that this is MS, you have to learn to live with it, but at the same time you have to keep the balance that you don’t give in to it. You don’t let MS dictate things for you.”

With the aid of two walking sticks, Bobby can walk for short periods, but overwhelming exhaustion, or chronic fatigue, is something he deals with on an ongoing basis.

“Some of the hidden symptoms of MS are not absolutely visible, but chronic fatigue is an issue for me. When I get tired, it’s total collapse. You know when you go out for a walk and you feel tired and you sit down, after about twenty minutes you can get up again and go again? It can take me two or three days to get over any sort of physical exercise.

“You can look well, but you can feel terrible and that’s the problem. It’s hard to explain. I know at home here when I take off to the bed, people say ‘ah sure you look grand, what’s wrong with you?’ and unless you really know what symptoms it makes it difficult for the people around you to sort of know what’s going on.”

In recent times, Bobby has been able to tell his experiences of living with MS to others, to try and help them find a path on their own journey with the condition.

“My consultant asked me to speak to a man. He was a farmer over in Cavan and he would not give in. He was told he had MS. He would not give in to it. He would go out and about. Wouldn’t talk to his family about it and he wouldn;t even talk to me about it. He just said ‘I’m getting on with it’. He said ‘I have to get around with a stick’ and I said ‘what about help and aid and that’, ‘nope, nope’ he didn't want it. He just couldn't accept it. To me the big problem was, okay, he was able to carry on and do some of the work that he would do on a farm, but he was putting himself at risk.”

For Bobby, knowing and understanding his conditions has helped him deal with it.

Staying up to date on new therapies and new science, also gives him hope.

“I’ve done a fair bit of reading and I hear other people and I listen to other people and I remember I was reading an article about a woman down the country at 30 years of age and she had the recurring-remitting type of MS and I remember a comment she made, she said ‘today is a bad day, I’m in a bad place, but I’m recovering and tomorrow will be a better day’. You try and get that positivity and keep it, it brings you around again.

“I know there are people with MS and they are in pain all the time - it’s just continuous and when you’re in that space it is very difficult to see where the upside of it is. I’ve the good fortune that I’m lucky in the MS I have and the way it has progressed and the age I’m at and that I have the support network. I know nowadays when things are starting to happen and starting to go and when that tiredness sets in that I can talk myself round.

“The whole issue for people with MS is to find ways of managing your condition, what works for some, won’t work for others.”

Talking about MS is part of Bobby’s journey these days. He’s part of MS Ireland which is taking part in World MS Day on Saturday May 30. As part of that day 9000 virtual balloons - signifying the number of people with MS in Ireland - will be launched from the MS Care Centre in Bushy Park in Dublin at 12noon and using algorithms, live weather systems and Google maps, the virtual balloon racing platform allows the balloons to behave, fly and burst just like real balloons.

Although a short-term person by nature, Bobby is, as ever, positive about his future.

“My progression has been very slow,” he says. “I’m not as badly off as some.”

For more information on MS and services in your locality, please contact your Regional Community Worker Aoife Lambe at aoifel@ms-society.ie or 0864613369.