Rugby union and MND: A very complex tragedy

As motor neurone disease started to rob Doddie Weir of his voice, it threatened to do the same to his spirit.

The former Scotland and British & Irish Lions international rugby union player had been a giant of a man — standing 6ft 6ins (198cm) tall and weighing over 17 stones (109kg; 240lb) — but it was his personality that helped him dominate the pitch: fearless, ferocious but always with a twinkle in his eye.

His condition would have broken most people, but in Weir, the disease had met its mischievous match.

“We had somebody come to visit one day,” remembers Weir’s widow, Kathy, “and after they’d gone, I came back in the house and all you could hear from his speech aid was, ‘W***er. F***ing w***er’. And he was sitting there with that look on his face…. that was Doddie. Sometimes I would be sitting there thinking, ‘Oh God, what on earth is he typing?’.”

It has been almost three years since Weir passed away at the age of 52, having been diagnosed with motor neurone disease (MND) in 2016.

As Kathy sits in the kitchen of the farmhouse she shared with him for 20 years in the beautiful Scottish Borders, she says that this interview is something she would not have been able to do a year ago.

“It’s only now that I feel in a place where I can talk about it. It’s in there,” she says, pointing at her chest, “but you bury it. You don’t want to speak about it, probably because it wasn’t a very nice experience.”

Kathy also worries about saying too much; she does not want to scare others who are treading a similar path.

Weir was not the first high-profile rugby union player to have MND, sometimes referred to as ALS (amyotrophic lateral sclerosis), which is the most common form of the condition and is also known as Lou Gehrig’s disease in the United States after the New York Yankees baseball star who died as a result of it at 37 years old in 1941.

In 2011, Joost van der Westhuizen, an icon of the sport in his native South Africa, having been part of the team that won the country’s first Rugby World Cup in 1995, was diagnosed with it, dying six years later at age 45.

Then, in 2022, it was revealed Ed Slater, a stalwart of the English club rugby scene, had the condition; and last month came the news that former England captain Lewis Moody, 47, had received his own diagnosis.

There is no proven scientific link between MND and rugby union, despite this rash of high-profile cases, but Kathy’s reaction to Moody’s news was instinctive, visceral.

“I was driving at the time,” she says, “and I heard it on the radio. I think my initial reaction was, ‘Oh god, the family’. That’s another family… It’s terrible for Lewis. It is also terrible for the people who weren’t in the news that day who will have got that diagnosis, because he wasn’t the only one.

“It’s a family thing, I think that is where my heart maybe skipped a beat.”

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Four months before Weir’s journey with MND ended, Slater’s began.

He was 33 when diagnosed after almost a year of symptoms and tests. By that time, he says he was ready for it.

Speaking now via eye-gaze technology, which uses cameras to track a person’s eye movements, allowing them to control a computer or communication device with their eyes instead of their hands, Slater explains receiving the diagnosis brought “relief from living in limbo, with no answer to what was happening to me”.

After getting the news, Slater retired from professional rugby, ending a career that included spells with Leicester and Gloucester in the top division of the English game and focused on finding “practical solutions” to what lay ahead; a bike ride to raise money, a family trip of a lifetime to Australia and preparing his home for the adjustments he and his loved ones knew would be needed as his condition declined. “I guess that’s my strength,” adds Slater, “saying, ‘OK, I can’t control having MND, but here is what I can do’.”

Slater found comfort in speaking to former England rugby league international Rob Burrow, who had announced his MND diagnosis in 2019, and together the two of them devised a fundraising idea involving a cross-code match in their sport combining the 15-man union and 13-a-side league formats.

Just over a year after their initial discussions, the inaugural 745 Game — the numbers reflect the jersey numbers worn in their playing careers by Burrow (7), Slater (4), and Weir (5) — took place in November last year. Sadly, Burrow was not there to see it. The Leeds Rhinos legend, who had campaigned tirelessly to raise funds and awareness of MND, had passed away five months earlier at 41.

The second 745 Game takes place this Sunday at Kingsholm Stadium, home of Slater’s former side, Gloucester. Coming so soon after Moody’s diagnosis, it will seem even more poignant, and also necessary as a way of raising critical funds for a deadly disease about which so much remains unknown.

What we do know is this: MND affects the body’s motor neurons, the long cells that connect the brain to your muscles. In most people, electrical impulses are carried down these, allowing us to move different limbs. In someone with MND, these cells start to die.

“That means we can no longer carry those signals from our brain to our muscles, so our muscles don’t get these signals to move and, over time, they waste away,” explains Jessica Lee, director of research at the My Name’5 Doddie Foundation, which Weir launched a year after his diagnosis and which has now committed nearly £20million ($26m at the current rate) to fund pioneering MND research projects. “What that means is that people with MND are slowly paralysed over the course of anywhere from one to 10-plus years. Around 30 per cent of people will die within the first year of being diagnosed.”

It is, Lee says, a brutal disease, which affects every muscle group — from those that help with speech, to movement, and even, fatally, breathing.

Diagnosis is not easy.

Firstly, the onset of MND can vary. Some will notice their hands or feet not working like they used to; others could be alerted by having difficulty swallowing or with slurred speech. From that point, it requires what Lee describes as “a cocktail of observational studies” to arrive at a diagnosis, usually culminating in an electromyography (EMG), which evaluates muscle and nerve function by recording the electrical activity of the patient’s muscles.

“A lot of times, a key part of the diagnosis is the person needing to have actually progressed in the disease, which is why it can take so long,” explains Lee. “There’s no magic gene test at the moment, so clinicians have to be very expert at diagnosing it, and there’s only so many of these experts, who all have to see a lot of patients.”

So what of the link between MND and rugby?

In 2022, a University of Glasgow study of 412 male former Scotland international players found that they were approximately two and a half times more at risk of neurodegenerative disease, and up to 15 times more at risk of MND, compared to 1,236 matched individuals from the general population.

It led Professor Willie Stewart, who led the research, to call for the adoption of “precautionary approaches… to reduce unnecessary head impacts and better manage head injuries across all contact sports”. Yet the relatively small sample size of that study meant no definitive link between MND and rugby could be drawn.

Slater is adamant that rugby is not responsible for his condition, a view that was shared by Weir while he was alive. “As far as he was concerned, it wasn’t rugby that did that to him,” says Kathy. “And until it’s proven, I don’t think that anybody can say that it is.”

Lee says our understanding of MND and its causes is still lacking. Part of the reason for that is the difficulty in studying it. With cancer, she explains, there is a tumour that can be taken out and studied. Motor neurons, however, can be up to a metre long and spread across our bodies. They are much more challenging to extract.

In the past decade, researchers have found more innovative methods, which means progress has sped up, says Lee. “We know that there’s a six-step model to developing MND, so you need six hits to develop MND, and each person’s hits will be different. Some people have genetic mutations that might account for up to three of these hits, and then there are environmental factors that we don’t yet understand, which make up some of those hits, and ageing, too. But at the moment, there are no clear causes for the majority of cases.

“Obviously, there’s a lot of speculation about people who are professional athletes being diagnosed, and with rugby, more people have been in the spotlight recently, so it has called into question a relationship between athleticism and MND. But as of yet, we don’t understand the mechanisms underneath that.”

The My Name’5 Doddie Foundation is one of several such bodies funding studies that are trying to better understand whether there is a link between playing professional sport and developing MND. One of these involves looking through the death certificates of thousands of former professional football players. Similar studies have been done for rugby and have contradictory results.

“We are also funding studies that are looking at impact and MND,” says Lee, “and whether direct impact can trigger some cellular mechanisms that lead to developing the disease. We’ve just funded a study that looks at traumatic brain injury (TBI) and whether there’s a link with MND. Based on that study, which involves thousands and thousands of people, it doesn’t seem like TBI causes MND, but we found that in people who have had a TBI, within the next two years, there’s a significant increase in them being diagnosed with MND.

“(However) We think that, actually, these are people who already had MND and were unsteady on their feet, and therefore falling and suffering a TBI.”

My Name’5 Doddie is also funding research into the relationship between strenuous physical activity and MND; a team in Sheffield are using fruit flies as a model. But, as Lee points out, “they’re not the most straightforward studies to do”.

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Weir’s first clue that something was wrong came in early 2016, when he started having problems with one of his hands. Initially, Kathy remembers, he dismissed it as nothing more than an injury from playing days or connected to his post-rugby farm work. Then, for reasons she can’t explain, he started looking up his symptoms on the internet. What he found led him to call his doctor, and so began the series of tests.

Throughout that period, Kathy remained convinced his online findings were wrong.

“I always said, ‘No, absolutely not’. I just thought that these things don’t happen to us. ‘We’ve got this perfect little life. You’re a big, strong guy. How can that be?’.”

When Weir was diagnosed almost 10 years ago, MND was not as high-profile as it is now. Kathy recalls being offered information on what was likely to be in the future for her husband, but she preferred not to look too far ahead. “I didn’t want to see exactly what was going to happen,” she says.

Her thoughts go immediately to the Moody family and others receiving that same diagnosis at a time when it is much harder to hide from the realities of what awaits: “My heart goes out to them because I think, ‘Oh my God, they know exactly what is coming now’.”

Weir was different; he did want to know. And the more he read, the more frustrated he became.

“There was one drug (for MND), which had been the same for the last 30 years,” says Kathy. “And there was no hope, really. Doddie said, ‘That cannot be right’. That was when he decided he was going to make a difference — raise some awareness and a little bit of money. I don’t think any of us really knew where it was all going to end up.”

As we speak, Kathy’s four-year-old black Labrador, Xena — named after the Warrior Princess in the 1990s TV show — sits in her favourite spot by the kitchen window, a large shoe, belonging to one of the Weirs’ three sons, held firmly in her mouth. Xena is company on days when none of the boys are at home, devotedly following Kathy as she does her jobs around the farm.

Kathy’s strength is extraordinary, but whenever her emotions do threaten to bubble over, Xena seems to sense it, leaving her cosy seat to nuzzle at her arm.

Pictures of Weir adorn almost every wall, in his playing days and also the years following his retirement. In them, he looks strong, robust, and with a zestful love for life which matches the formidable tartan that was designed especially for him in 2018. There are, however, no photos of him after MND altered his physical appearance almost beyond recognition.

“I don’t like looking back,” says Kathy. “I go to these (fundraising) dinners and I see a lot of (the latter kind of) Doddie pictures. I don’t even know who that person is. Even though you’ve lived it and were there at the time, I don’t want to see it. I remember Doddie now as the way Doddie was — my husband Doddie, not the sick Doddie.”

For a while after Weir’s diagnosis, little changed in the family’s day-to-day lives. He continued working on their farm and for Kathy’s father, who had a sewage treatment business. They wanted to keep things as normal as possible for as long as they could.

With one eye on the future, the couple made changes to the farmhouse, knocking out a wall to create an extra room (and wet room) on the ground floor, preparing for the time when Kathy would no longer be able to get her husband upstairs.

When Weir had to accept he was no longer able to drive, it marked the first step in the surrendering of independence that MND eventually steals away entirely. He continued working for as long as he could, but soon that stopped, too. The hard days got harder, although he remained remarkably resilient, even attending a Scotland-New Zealand rugby union international at Murrayfield Stadium in Edinburgh 13 days before his death.

Kathy is still stoical about it — “that was our life, and we just had to get on with it” — but hindsight has given her the ability to step back and accept that it was, at times, unbearably tough.

“But he couldn’t do it for himself, so you do it,” she says. “You know, it was him… You had to do it for him.”

A neighbour called Alice helped Kathy, and a professional carer came in one morning a week. But it was a 24-7 role. “I do look back now and think, ‘I don’t know how I did that’. It was constant. It was hard. But you don’t see it at the time because you’re in it, and you’re just doing it. And I did it because it was Doddie, and he couldn’t do it. I think it was maybe a year and a half (after Weir’s passing) before I actually looked back and thought, ‘Maybe I wasn’t so fine then’.”

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Slater describes his hardest days as a battle – sometimes he wins, sometimes he loses.

His safe space is being at home with wife Jo and their three young children, and he’s lifted by visits from friends who bring energy and stories with them. If he’s feeling low, he fights the urge to be alone and sees them instead.

But as his speech became less and less clear, those interactions grew increasingly difficult. While those observing from afar might look at Weir, Burrow and Slater and wince at the obvious physical deterioration that transforms these robust players of one of the toughest sports in the world into frail versions of their former selves, Slater explains losing his ability to talk has been the most difficult symptom he’s had to endure since his body began to deteriorate four years ago.

“So much of life is about interacting with other people — talking on the phone with friends and family, visitors to the house, having a laugh, sharing stories. We need social interaction, however big or small. When you can’t contribute to a conversation or make a joke, it is very, very lonely, not dissimilar to what I imagine people living alone with no family and friends must feel. Except I have wonderful people around me, and I can’t communicate with them. It’s just far more difficult than any physical changes I have faced.”

In his excellent blog, Slater’s dark humour paints an even starker picture of his new reality, explaining his thoughts on one difficult day about our beloved pets, and how they can’t talk back to us. “Am I turning into a dog?” he asks. “Needing attention like a puppy, breathing like a bulldog, unable to grasp the concept of fetch, and refusing any form of exercise, but you have to keep watch in case I s*** somewhere in the house. The s***test dog ever.

“I joke, but it’s close to the bone, isn’t it?”

Slater retains his passion for the sport he says has given him so much, including most of his closest friends: “I was well paid to do something I absolutely loved doing. I will always appreciate what I have been able to do because of the game.

“What has happened to me isn’t about rugby, and it’s really important for the thousands of people living with MND who have never played rugby that we ask questions and find answers beyond the fact that some of us are rugby players.”

All three of the Weir sons also love their rugby and play it at club level. It’s something Kathy has always encouraged, giving them all the benefits of exercise, socialising with friends, and experiencing the camaraderie only team sport can provide. “I would not take that away from them, just on the assumption that there might be a connection with MND,” she says.

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There is, according to Lee, no single magical drug that can be found to cure everyone with MND. “Everybody has a unique form of the disease and a cure for each person is likely to be a combination of drugs that work for that person, combined with being diagnosed earlier,” she says.

While she doesn’t believe that those cures are necessarily tied to finding the cause of MND, she accepts that understanding the latter would only help with the former.

There have been glimmers of hope. An effective treatment has been discovered for those with a very specific genetic mutation in a gene called SOD1. “Tofersen is basically the first drug that’s really worked,” says Lee, “but it only targets a very small population. Now we just need to understand more about those other people and keep testing all these new drugs that are coming through.”

Until that time, those who have MND or have seen loved ones go through it must try to find shards of light in the darkness. Kathy says that as a family, it brought the Weirs closer. “Covid was a terrible thing, but for us it was probably good. We were all here and had that time together. Because of MND, we made an effort for that family time, whereas maybe you normally get stuck in your little life and you don’t necessarily do that.

“I also learned a lot about myself throughout the whole MND journey. If somebody had said to me 20 years ago that I would end up being a carer for somebody, I would have said, ‘A hundred per cent that is not me, I will not be doing that’. It’s changed our lives in different ways, but now I’ve come out the other side, I think I am a stronger person for it.”

Slater talks about the perspective it has given him, how if he could wake up tomorrow, magically healed, he would live a very different life from the one he had before his diagnosis: “I was driven to succeed as much as I could, sometimes at the expense of other things. There is a lot to be said for contributing to your community and helping those in need. I would focus on those things and give my family all the time in the world.

“I wouldn’t stress about 80 per cent of the things I might have before. That’s a gift, it’s just unfortunate I can’t make use of it with a long, healthy life. The thing is that you can’t really understand it until you have walked in the shoes of someone who is living like myself, or others with life-limiting illness. It wouldn’t be possible to live your life like that.”

On his Instagram profile, Slater has written the words: “MND is living with me.”

He explains that while he has no problem with people talking about living with health issues, he caught himself saying it once with regards to MND and decided that was not going to be the case:

“I thought, ‘No, MND is living with me. The worst housemate has moved into my house’. This is my body. I am myself, and so MND is living with me.

“Unfortunately, it’s a bit more complicated than serving an eviction notice, haha.”