It is hard to imagine any upside to being diagnosed with an incurable, life-limiting disease at the age of 43, but Andres Estevez Guersanik is focusing on positives.
“The shock element is brutal,” he concedes, especially because, as a keen marathon runner and long-distance cyclist, he was exceptionally fit. He even did the Connemara ultra marathon (63km) in 2022. “But I think sometimes a slap in the face from life is a positive thing. In my case, the slap is a bit harsh but it has taught me an awful lot of things in the last while.”
It is less than six months since he received a diagnosis of motor neuron disease (MND), a few weeks before his 44th birthday. It is still raw for him and his wife Jen. They told their two sons, Leo (15) and Alex (11), almost straight away, after seeking advice from the Irish Motor Neurone Disease Association (IMNDA) on how best to do that. But then they kept the news to a tight circle while they got their own heads around some of the implications.
“I don’t know if you can say they took it very well, but they understood it,” says Andres of his sons. Both of them are “very science-y”, which made the explanations easier, and Alex was the first of the family to fundraise for the IMNDA by running a lemonade stall with his cousins.
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MND is a progressive neurological condition that attacks the motor neurons, or nerves, in the brain and spinal cord. This means messages gradually stop reaching muscles, which leads to weakness and wasting.
Before his diagnosis, Andres had followed with detached interest media coverage of former RTÉ journalist Charlie Bird (74), who, as one of about 450 people in Ireland living with the condition, is using his high profile to do extensive fundraising. But of course Andres had no idea that he too was about to be admitted to this “exclusive club”, he says ironically.
The IMNDA says MND is often referred to as the 1,000-day disease, as most people die within 1,000 days of first symptoms. But there is no point in fixating on a theoretical time frame because, as he points out, doctors say with this disease they can give only a diagnosis, not a prognosis.
“I don’t want to put a number on it; I definitely think of it as a long-term disease.” The rate of progression varies greatly from one person to another and he has already met people who have been living with the condition for more than 20 years. Indeed, one of his childhood heroes, cosmologist Stephen Hawking, lived for more than 50 years with a form of MND known as amyotrophic lateral sclerosis (ALS).
“It’s a disease that is unpredictable and unfair and impossible to understand,” says Andres. But the reality is that all life is terminal and, just like everybody else, he does not know when the end will come. It might be due to his MND but it could also be the proverbial bus that can hit any one of us at any time.
“I still don’t know, and I don’t want to know, when I am going to die, or how I am going to die. What I do know is that I have less chances now of doing many things and so I cannot waste that time. For me that became crucial.”
I started to feel a lack of air or something, pressure on my chest. I thought I was having a heart attack or a panic attack, I didn’t know what it was
Three days before we meet in their Dundrum home in South Dublin, he and Jen had attended their first IMNDA conference in Athlone. Contrary to their fears that it might be depressing, they found it uplifting to be with other patients, all range of ages and at different stages, and their families, although Andres was one of the younger ones.
“I think in many ways it has really helped me to put me in my place, pretty much in the world,” he says. While he is being forced to understand and accept what is happening to him, there are always people who are worse off. He was reminded how privileged he is, for instance, by meeting a man who had to flee from Ukraine with his family after the Russian invasion.
“He arrived in Ireland as a refugee and within four months he was diagnosed with motor neuron disease. Am I going to complain?”
For Andres, who has lived in Ireland for the past 20 years, the first red flag was cramps in his right arm while on a cycling holiday in Majorca last September. A fortnight earlier he had completed the Dingle marathon in Co Kerry, so thought he was probably just overdoing it when cycling about 600km over three days with his friends.
On his return, he took a break from training and hung up his bike on the wall for the winter. But when he went for a run in November his arm cramped while he was running “which was a very idiotic thing to happen because you run with your legs not with your arm”. He tried to loosen it, to no avail. “I came back home really grumpy because I couldn’t finish my run.”
He became rather more worried when, aiming to do a 15km run last February, “before I even managed to do eight, I started to feel a lack of air or something, pressure on my chest. I thought I was having a heart attack or a panic attack, I didn’t know what it was”. All he knew was that he could not go running again until he got to the root of the problem.
He had thought his hand and arm issue could be carpal tunnel syndrome (CTS), but a physio he was attending noticed twitching of his back muscles and suggested he go to his GP. By that stage he and Jen were considering the possibility of multiple sclerosis (MS), as they had seen friends go through that diagnosis with similar symptoms, but neither voiced their fear to the other.
The GP referred Andres for a brain and spine MRI, which would show if it was MS, along with a nerve conduction study for the arm, to see if it was CTS. Both conditions were ruled out but, from his own research and being the son of two doctors, he knew that left MND as the one matching everything. When the diagnosis came at the end of April, he felt some relief in knowing what he was dealing with and that the long series of medical investigations could stop.
“As soon as you know, fine, there is no cure, but there are treatments and things you can do now to address the symptoms.” He was immediately put on to the one drug approved for MND and doctors looked at way to deal with the twitches, which were disturbing his sleep, and prescribed a muscle relaxant to ease the cramps.
He is full of praise for the multidisciplinary team, led by Prof Orla Hardiman, in the clinic which he attends at Beaumont Hospital. Their collaborative, holistic care gives him confidence that he is in good hands. They have said that because he has been so in tune with his body through his training, small changes were obvious to him but that, from their perspective, is he still in the early stages.
“They also gave me the blessing that if you can keep running, go and run.” But they advised him to slow down.
“I used to be naturally quite fast and one of the things the doctors pointed out is, ‘you need to remember you are not that you any more. Your brain probably still thinks that you can run a 5k in 18 or 19 minutes, the reality is you can’t.” His best marathon time was three hours, 15 minutes in Dublin in 2019.
Now he is challenging himself to do a 10k run once a month, in addition to 5ks two or three times a week. He runs on his own or, ideally now with Jen, also a marathon runner, who can act as his pacer. He never was a social runner, preferring to take just their border collie Rosie for company on runs in nearby Marlay Park or to Ticknock and beyond. In a former life he was a park ranger in Argentina and has always enjoyed solitude, nature and the company of animals.
“I work as a business consultant; I see and talk to people all the time. So running is the time when I found myself. It was therapy, exercise, pleasure – it ticked all the boxes for me.
“Regardless of how tough the run was, I was always happy. Now it is a mixed feeling. The happiness of running, yes, but it is bloody tiring. I am more aware of where my muscles in the arm, or the back or the chest, start tweaking, or I am feeling a drag in the leg.”
“You can’t relax as much,” says Jen, who has come into the room momentarily and stands by his chair, affectionately running her fingers through his tight black curls. “Now part of the enjoyment has gone,” he says, “so I cling even harder to the part that hasn’t gone.”
By August, Andres was ready to disclose his diagnosis to his boss and close colleagues at Mazars. A member of the management group, he loves his job. One of the benefits of the post-Covid world is he can work from the cabin in the corner of their well-tended garden. He tries to go into the office once a week, as “we all need that connection”, and is grateful for the company’s supportive attitude.
“They give me absolute freedom, on the understanding that they know what I am going through, also on the understanding that I know what I am doing.”
He used to be “a very annoying morning person”, he says, who would wake up before the alarm and go running at 5.30am, “so I had the rest of the day clear and also because of the endorphins”. That’s all changed.
“Plenty of times I wake up in a fog, not knowing where I am, and I have to put two or three alarms, so it is harder to start the day.”
At the beginning of this month he signed up for the IMNDA’s Walk While You Can Campaign. “I took that as my opportunity to come clean with everyone,” he says, by announcing his intention to do it through the company’s internal email list and on social media. He explained about his diagnosis and how he struggles to do simple tasks such as write, peel an orange or chop a carrot. But he can still walk and run, which was why he wanted to do this and raise funds for IMNDA, “as they can help a lot of people who can’t walk”.
This campaign, started by the late Father Tony Coote, is now in its sixth year and people are encouraged to go out and walk 5km in their communities on or around October 21st, to raise funds to support the association’s work. (For more information, or to register to set up your own 5K walk, see imnda.ie). Andres, who will go to Marlay Park with family and friends, is astonished at the response to his appeal, having had to double his initial modest €500 target within hours. It passed €7,000 when there was still 10 days to go.
The association was the first place Jen turned to after Andres’s diagnosis. “I rang them straight away and they responded. I wanted the nurse to come and talk to us and hold our hands through the initial stages before we told the kids.” The advice was that you are a team; be open with the children and then they won’t worry that you are holding things back. The IMNDA also provided counselling for each of them.
Despite his illness, Andres still considers himself very lucky in life. “That doesn’t mean s***t doesn’t happen, it happens to everyone and you can decide how you react.”
It makes me a lot more appreciative of the little things we take for granted
Among the first things he did was “to make a couple of phone calls to apologise ... and it felt really good”. As a result, he has rekindled a friendship with somebody in Argentina, which 20 years in Ireland had caused to lapse.
“I have always been known for being very practical and I say what I think – aka blunt as an old knife,” he smiles. “But I feel an even higher urge now in no bs. There is no time. It helps because it cuts through a lot of nonsense – that doesn’t mean being rude, or ugly with anyone.
“At some point you start questioning how many times was I an asshole? And [the occasions] I was just rude because I was in a rush and I didn’t have time? You can’t do anything for that past but you can change that.” It is a lesson he wants to share with his children.
“It makes me a lot more appreciative of the little things we take for granted.” He sees positives rippling out to others too: the bond between the four of them in the house is even tighter, while relationships with his in-laws, “my family here”, and his own family in Argentina, have strengthened. He was able to meet his older brother “and best friend” who was over from Argentina for work in Denmark recently, who told him that the news had made him readjust and refocus many things in his life too.
Andres is now getting into a routine of making regular calls to his brother, his sister and his parents, who, as doctors, are well aware of the nature of the disease their son has to cope with so far away from them. “The crying comes, invariably, because it hurts but that does not take away the positivity.” He enjoys a dark sense of humour with his parents, humour typical of Argentinians, he suggests.
“It is probably the one thing that has helped us as a culture to survive all the instability of the country.” A humour that clearly leavens his life here too.
“Now for me it is perhaps the most powerful tool that we have. It is really important; it is already tough enough, so if you can actually laugh, you gain that space back from the gloom.”
