MS: ‘I was looking for someone to tell me it might not be as bad as you think’

Random parts of Andy Walsh’s body started playing up towards the end of 2019. There was the occasional numbness in the quad of his right leg; his right foot sometimes dragged slightly; picking cones up after football training became difficult.

He put it down to lingering after-effects of a back injury a couple of years previously, perhaps a trapped nerve with referred pain down the leg. But there was also a droopy eyelid; the sensation that he had just come out of a dental surgery when intermittent, one-sided numbness in his face struck; pins and needles across his chest.

“Little things that I didn’t really add up,” says the 43-year-old father of one, a school caretaker who is also active in Irish motor rallying and Co Mayo GAA circles.

“Being a man, I didn’t have time to go to the doctor,” he says in tones of heavy irony.

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He noticed his right leg was slowing him down while working at the Mayo Stages rally on the first weekend of March 2020 and went to an osteopath to straighten his back out, thinking that would sort his leg. “She didn’t want to work on me because I had no pain.” Instead, she recommended a magnetic resonance imaging (MRI) scan to see if it was a slipped disc or trapped nerve. That was done the next day at the private Blackrock Health Galway Clinic.

Sitting in the waiting room afterwards, a doctor called him in and said something had shown up on the scan and they wanted to admit him for more tests. Andy’s mind went into a tailspin and he has little recollection of the ensuing conversation, although he does recall being asked was there a history of multiple sclerosis (MS) in the family. “I remember saying to him, ‘you say MS, I automatically think wheelchair. Have I got MS?’ He said ‘no, no, we have to do more tests’ blah, blah blah.”

While Andy was sitting in a daze waiting to be admitted, Taoiseach Leo Varadkar came on the television in the corner to address the nation from Washington: “I need to speak to you about Coronavirus and Covid-19 ... ”

But for this particular citizen, there was only one disease in his head and it wasn’t Covid.

MS is an autoimmune condition affecting the central nervous system, ie the brain and the spinal cord, which controls functions of the body by transmitting messages through a network of nerves. These nerves are covered by a fatty substance called myelin and MS develops when the immune system mistakenly attacks the myelin, causing inflammation and disrupting the nerve messaging. In the majority of cases there will be some degree of repair to the myelin sheath, but over time repeated damage can lead to scarring and loss of the nerve in some cases.

Andy called his wife, Sheila Gormley, who works in administration at Castlebar hospital. “I wasn’t a big smoker but I remember saying to her, bring up my cigarettes, I have none and I need a cigarette.” Googling MS while he waited for her arrival, one of the first things that came up was the random factoid: “If you are a smoker, you are 70 per cent more likely to relapse ... ”

By then, the hospital had entered pandemic mode, while “everyone in the outside world had gone buying toilet rolls and bread”. Sheila wasn’t allowed into the hospital and he wasn’t allowed out. Eventually, they were permitted a quick meeting in the foyer, so she could hand over his bag.

He was going to have a cigarette after she left, but then reflected on how he had been thinking that if it was MS, he must try to stack the odds in his favour. He postponed that cigarette until at least the next day. “A lot of things were out of my control” – but the decision whether or not to smoke again was not. “Tomorrow became a week and I still have that packet of cigarettes in the glove box of my car. I never opened them.”

After confirmation of the diagnosis, he was kept in for intravenous steroids. Within 24 hours he recalls demonstrating to the consultant how he could lift his right leg a little higher than the day before. “That’s good isn’t it?”

The doctor just looked at him and then back down at his chart. “I said ‘my enthusiasm doesn’t seem to be rubbing off on you’. He looked at me again – ‘that’s the results of the steroids’. I said ‘but my brain now knows I can do it, so there’s a bit of hope’. He looked at me again and put down what he was reading and said ‘a good attitude; this is going to go a long way to fight this’.”

They were words Andy took to heart.

After six nights in hospital he returned home to a different world, both internally and externally. Sheila, with a hospital job, was about the only person in their small housing estate in Ballinrobe still going to work every day. Andy’s workplace, the local community school, had closed and he was at home with their son Ajay, then aged 11. “I have gone from being so active to doing nothing at all. It was very tough to come to terms with.”

Meanwhile, he was searching online for people with MS to learn how it was affecting them. “I am looking for someone to tell me that it might not be as bad as you think. I cannot find this person I am looking for.”

Although MS is not an uncommon condition – with about 300 new cases diagnosed in Ireland every year – people tend to associate it with being in a wheelchair, agrees Dr Karen O’Connell, consultant neurologist at Tallaght Hospital and Peamount Healthcare in Dublin. In what she terms the “pre-treatment” era, the disease often advanced to that stage when people were still in their 40s and 50s.

But progression of the disease tends to be “much, much later” now. “We have much better treatment options that keep people better for longer.” She tries to advise the newly diagnosed that they can have a degree of optimism now about leading a relatively normal life.

Early diagnosis is really important, she says, and then appropriate treatment. About 90 per cent of people present with Relapsing Remitting MS; this younger onset of the condition generally occurs in the 20s-40s, with two to three times more women than men affected. Classic symptoms include eye movement pain, blurring of vision, sometimes loss of vision, which comes on for a day or two and then gets better. Unsteady walking, vertigo, or weakness on one side of the body, are also common signs. For the other 10 per cent there tends to be a slower, more insidious progression of the disease.

Among newly diagnosed people, “there is a lot of early anxiety, understandably”. But with specialist nurses being an invaluable point of contact and reassurance, she believes patients tend to worry less and become more comfortable with the diagnosis over time.

“If you only look back, you will never move forward. Sadly, I do see people who spend time lamenting what they have lost when they are still quite able to do things,” says Dr O’Connell, who is, along with Andy Walsh, among the contributors to a new, second season of MS Explored, a podcast series from MS Ireland and Novartis (see ms-society.ie). She discusses what to expect and how to prepare for a first consultation with a neurologist.

Her tips include:

• Write down in advance any questions you want to ask;
• Bring somebody with you, to hear everything that is being said;
• Reflect beforehand on your medical history so you are ready to share details;
• Bring a note of any medications you are on.

Andy had been home from hospital about a month after being diagnosed, when he went to stand out of bed one morning and fell over. “The right side of my body, from under my arm-pit right down my chest and my right leg is asleep. I slide down the stairs on my arse, calling my wife, saying ‘there is something wrong here, I can’t stand’.”

Helped into an armchair, he rang the consultant to find out what he should do. “He started asking me how was my house set up: have I a ramp to the front door, how high are the switches off the ground, is there a shower downstairs. And I am there going, ‘woah, you are moving way too fast. We spoke a few weeks ago and there was no talk of this’.” The consultant also discussed treatments but doesn’t know when he can see Andy next due to lockdown.

Meanwhile, a turbo trainer – a treadmill for a bike – was acquired for their home. “Bear in mind I am still not able to walk properly. Sheila is helping me across the kitchen.” But Andy was determined to make his core stronger.

He fell off at his first and second attempts. “I am trying to cycle. The left side of my body is working, my right leg isn’t moving the pedal. I am getting mad at this but there is nothing else to do. The first day I cycled about 1km and I thought I was about to die.”

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The next day he managed 2km. Then his health insurers rang to say they were turning down funding of the disease-modifying treatment proposed for him by his consultant. “I am, like, how does that work? I have been paying for the past 10 years, never needed you and now I need ye.”

He was advised he could appeal the decision through his consultant. At this stage “four walls was all I could see and there was no happy ending”.

He had come across MS Ireland online and saw it was doing a fundraising challenge on the theme of anything to do with the number 32. He decided to aim for cycling 32km in a day, which he did within three weeks. A rowing machine was bought to expand his exercise routine.

In September 2020 he got a call from his health insurers to say his appeal had been successful and his treatment began straight away. “Over the next few months I started to get my life back. I returned to the new normal. There is still some stuff I cannot do. I don’t climb ladders any more; I don’t cycle a racer on the road but I got a mountain bike because the tyres are wider and give me more stability. While I can’t do things the way I used to, I find other ways.”

Andy decided to join Charlie Bird, who has motor neuron disease, in his charity climb of Croagh Patrick in April 2022. However, about two weeks before, he was worried he wouldn’t be able to do it and decided to have a trial run. Sheila advised him to bring someone with him but, he recalls, “I said no, this is a journey I am on, on my own”.

Walking the incline was a huge struggle. Well before halfway, he was looking up thinking it was going to be impossible. “I am leaning against a rock thinking I have collected this money now and I can’t let people down. I had headphones on me and changed the music; put on a bit of AC/DC.” He vowed not to look up but just look down and take one step at a time.

Halfway, part of him wondered if it was time to call it a day. “Another half of me said you might not come this far again; at least if I do it, I can say I have done it – just not the same day as Charlie.”

He got to the top and rang Sheila. “I could hardly talk on the phone because I was crying.”

[ ‘My class is really excited about the readathon . . . they were really surprised to learn I have MS’ ]

Andy repeated the feat on the day of Charlie’s climb, raising more than €17,000 for MS Ireland and the Irish Motor Neurone Disease Association.

Andy is long back at motor rallies, interviewing drivers at the end of stages on Facebook live for onthepacenote.ie. But now, in advance of a weekend rally, he will start banking his sleep and prepare healthy food to bring with him.

He walks every day, often with their dog, Ruben, an energetic cross between a bichon frise and a Maltese. “I need to keep walking. I feel like a house of cards – my treatment, my lifestyle, my exercise. Everything is keeping me going and I don’t want to take any of those cards away in case it all comes tumbling down.

“I am a much healthier person now than before I was diagnosed. It is a bit of a crazy thing to say but I am.”

There is the odd bad day, he says. “But I know after a bad day the good days are going to come.” Living well with MS, Andy has become that person he had been looking for online at the outset of his diagnosis.

“I just wanted somebody to say to me ‘it might not be as bad as what you think’. It took a long time for me to come round to where I am now but I am so glad I did. I am back working fully, doing everything normally. If I met you on the street, you wouldn’t know I have MS.”

• Read: MS – What is it and what does the future hold?