MND: There has to be ‘an acceptance, a letting go and, dare I say, a surrender’

The first sign of trouble for Kevin Carroll was a weakness in some of his fingers on his left hand when he was playing the piano. “I just couldn’t press them down.”
That was four years ago and, after seeing his GP about it, he was sent for the first of three MRIs, none of which showed anything amiss. He was referred to a neurologist, but there was a long waiting list and, in the meantime, a relation suggested he might get nerve conduction studies done at Beaumont Hospital in Dublin.
Kevin thought his symptoms might be linked to an old injury. He had broken his shoulder at the age of 14, falling off “a very tall” ladder and then, just two weeks later, fell down stairs. He needed surgery and “the surgeon at the time in Jervis Street [hospital] told me he thought it would come back to haunt me”.
However, his wife Margaret, a former nurse, says she “didn’t buy” the suggestions that it might be carpal tunnel syndrome or related to old injuries. She suspected it was some sort of neurological condition. “I was seeing that it was power. I could see it was progressing in two years.”
After the nerve conduction studies at Beaumont, he was referred to consultant neurologist Prof Orla Hardiman there, who, coincidentally, his wife had worked with at one time. Motor neurone disease was not on Kevin’s radar that October day in 2022 when he was being examined by Hardiman, but, sitting alongside him, Margaret soon picked up on the consultant’s thinking.
“The first thing to be honest I did feel was, ‘Orla don’t say another word, we’ll get out of here’.”
Margaret realised that a diagnosis of motor neurone disease (MND) was coming. As a trainee nurse nearly five decades previously, when much less was known about the condition, she had cared for MND patients at the end of life in the old Richmond hospital. She knew that the moment the news was delivered to Kevin their lives would take an unwanted turning from which there would be no going back. She was concerned for her husband, as she knew he was not prepared for the diagnosis. Then her thoughts turned to what it would mean for both of them.
Kevin (72) is one of an estimated 468 people living in Ireland with MND, a record high for this country. MND is an incurable and progressive neurological disorder that attacks nerves in the brain and spinal cord, leading to muscle weakness and wasting. The cause is unknown and it can develop in people of all ages, with a wide range of possible effects. Former RTÉ journalist Charlie Bird (74) and English rugby league player Rob Burrow (41) were two high-profile deaths from the disease earlier this year.
Initially, the Carrolls held on to the possibility that Kevin’s type of MND was monomelic, which is confined to one limb. “Unfortunately, that’s not quite the situation,” says Margaret (69) two years later, as the couple sit in their Clontarf home in Dublin, talking about the impact of this disease, while stressing it is different for every individual.
Sometimes they wake up and wonder “How did we get to this?”. What she describes as “constant little losses” creep up on them.
Up to few weeks ago, Kevin could still handle a cup, for instance. Now, he is using a straw to drink. “But you adapt.” He has found his loss of energy challenging, but “I’m not a fan of the idea that you fight the disease”.
He believes there has to be “an acceptance, a letting go and, dare I say, a surrender to something over which you have limited control”. People might think that sounds like he is giving up but that is not the case. He tries to maximise his quality of life by maintaining a positive mental attitude, getting out in the fresh air every day and following a good diet. “It is about accepting realities,” continues Kevin, who is no longer able to drive, nor do the cooking, which he always did. He cannot dress himself, nor shave, and recently lost the ability to put toothpaste on a toothbrush.
“At the same time, I want to lead a very purposeful life. I keep going. I am still pushing my fingers on the piano. I can hit two notes with two fingers and I can still get out a chord, it’s basically background music,” he says of his continued playing on occasion at St Gabriel’s church in Clontarf, where he sings in the choir. Although he had to give up singing with the Culwick Choral Society.
Social connection is very important for anybody with a serious illness, he says. “You have to get out and meet people and live your life as normal as you can.”
Kevin is ambassador for this year’s Walk While You Can fundraising event for the Irish Motor Neurone Disease Association, which reports unprecedented demand for its services. People across Ireland are encouraged to walk 5km on or around October 19th to raise MND awareness and vital funds for the charity (registration on imnda.ie).
So far, the disease has affected Kevin’s upper motor functions. Having started in his left arm, it has gone into his right arm, shoulders and neck. His voice remains strong and clear.
“His walking is fairly okay, but it all has to be carefully managed,” says Margaret. Planning and adapting their schedules is really important, due to “neurofatigue”. It’s a particular type of fatigue that not everybody with MND experiences.
But the Carrolls remain positive, keen to share observations that could apply to anybody with a serious illness, such as Kevin wishing everybody would continue to treat him as normal. People might feel awkward but he would prefer they said that, rather than skirting around “the elephant in the room”. Although he appears a mild-mannered man, it clearly riles him if somebody asks Margaret “how is he?” in his earshot, “as if I am not able to talk myself”.
An irritation for her is being seen at health appointments as Kevin’s “carer”. Of course she cares for him but primarily she is his wife and there is a big difference between her and somebody coming in as part of his care package.
Kevin started practising meditation about 30 years ago and has found it invaluable in dealing with MND. “It is very calming. I do it every day. I could sit here for an hour but I do it for 30 minutes at least.” Since the diagnosis, he goes for acupuncture sessions as “it helps to keep your immune system good”.
Margaret studied mindfulness some years ago and used it periodically, but now she lives by it. “I say to Kevin, we have to take each day because that’s the only way you could survive it.”
“All our experiences are unique,” he says of people with MND. “My experience would be very different for somebody in their 30s. My kids are reared; I’ve had a long, happy life and I’ve had an interesting career. I’ve no complaints in that sense.”
Yet, there is no denying that this couple, who have been physically active all their lives, expected to enjoy a longer stretch of healthier retirement together. Keen walkers, they were planning to complete a stage of the Via Francigena in Tuscany, before Covid came. They were hoping to do it afterwards, but then MND arrived. Kevin concedes it will not be possible now.
However, he likes to focus on gratitude for what he does have, most importantly “a good, happy marriage”, and his “great kids”, now all in their 30s, Caoimhe, Cillian and Niall, and two grandchildren. The couple have been married for 36 years, having met “at the confluence of the White Nile and the Blue Nile”. They were both working for Trócaire in Sudan when they first laid eyes on each other in the aptly named Friendship Palace hotel in Khartoum.
They have lived abroad since in some challenging environments. After Trócaire, the last phase of Kevin’s career was in the Department of Foreign Affairs, working with the Irish Aid programme.
“You could be cooking your dinner in Nairobi and the power goes off and doesn’t come back until the next day. Or one of your kids keels over with malaria, as happened, and you have to bring them to hospital… Those sorts of things do make you more resilient,” he says.
“You are not in control,” points out Margaret. “Now we live in an age where everybody thinks we can control a lot of things.” They have no such illusions.
She admits to frustration that MND occupies such a big part of their lives. “Motor neurone, like any serious disease, can be all consuming,” she says. “You do have to have somebody who is a gatekeeper and an advocate because the number of appointments, follow-up calls – all of that has to be negotiated.”
The multidisciplinary approach can be great but “the dots need to be joined”, so patients can cover several appointments in one hospital visit. She is also acutely aware of the impact when healthcare staff “are really present with you” – or not.
“Since Covid perhaps, there is an awareness of the stress of working in healthcare for everybody, but personally, I don’t buy that as an excuse for somebody rushing in, or rushing out, or telling you how busy they are.”
Kevin has no complaints about the health services. While it took a while to get a diagnosis, he has since received various levels of support ranging from Beaumont and primary care to that from the IMNDA and outreach services from St Francis Hospice. His wife, who spent half her career in nursing, and then went into mental health working as a psychotherapist, says she looks at the system a bit more critically – not negatively but rather reflecting on what could be improved.
Margaret thinks Kevin probably copes better with the continuous loss of independence than she would if it was her. The limitations can be frustrating. “Not just Kevin’s limitations. I feel also that bit limited, because I would feel nearly guilty going off at lunchtime, even though now we have a care package Kevin will be looked after. But it’s that separation.”
They used to enjoy going to concerts or the theatre together but now Kevin is likely to find it too uncomfortable. Dining out has become an ordeal that they mostly avoid.
On the last occasion, the seating “was awfully uncomfortable” he recalls, and then he made the mistake of ordering linguine pasta. “It’s like lifting up mercury when you have a bad hand, it was a disaster,” he chuckles. “You do laugh at these things. Humour is important – the boys do black humour and they make me laugh.”
[ Motor neuron disease: ‘It doesn’t affect just me, it affects the whole family’Opens in new window ]
As winter approaches, he cannot go outdoors unaided because he can no longer put on a coat. He is always trying to find ways around these losses, such as going to lie on the bed with the coat and manoeuvre himself into it that way. He cannot get his finger up to the doorbell at the front of their house but he can press his head against it.
A spiritual person, Kevin finds his belief in “a higher intelligence out there” helpful. “At the moment, I am not fearful of dying. I might feel differently if I was told I had only a week to go, I don’t know. Sometimes it kind of surprises me but I actually don’t [fear it]. The part I would not like, obviously, is the impact it would have on the family and Maggie being left behind.”
Meanwhile, “we’re managing, we’re doing all right,” says Kevin, who then touchingly looks to his wife for confirmation, “are we”?
“We have to,” she replies with a smile.