Anyone who passed the small if slightly mismatched group in the corner of the Dalmahoy Hotel outside Edinburgh last week would have assumed it was a gathering of old friends, mixing serious discussion with uproarious laughter.
Until recently, the trio of Doddie Weir, Stephen Darby and Rob Burrow had no connection aside from the fact they all had careers as professional sportsmen: Weir as a rugby union second row for Scotland and the Lions, Darby as a footballer for Bradford City and Bolton Wanderers, and Burrow as a rugby league scrum-half for Leeds Rhinos and England. Their paths may never have crossed had fate not brought them together when they were diagnosed with motor neurone disease, an incurable, degenerative condition that attacks nerves, so muscles no longer work. Initially, this can manifest itself in different ways. Weir is most affected around the shoulders and neck, Darby in his hands, and Burrow with his voice.
The first signs of their condition seemed so innocuous. In 2015, Weir caught his hand in a door and the pain never went away. For Darby, it came in 2017 when his hand slipped off his car’s steering wheel, which he assumed was the result of a dead arm. Last September, Burrow was giving a speech at Leeds Rhinos’ end-of-season awards when he started slurring his words.
Kevin Sinfield, his great friend and Rhinos director of rugby, asked if he had been drinking, even though the near-teetotal Burrow could not hear the difference in his voice.
There is no single test that can detect MND. Instead, patients have to go through a laborious process of elimination. In Darby’s case, that took two years, during which he continued his career as a professional footballer. Burrow’s took a matter of weeks. The timing of the diagnosis was excruciatingly awful in each circumstance. For Weir and Burrow, theirs came just before Christmas in 2016 and 2019 respectively. Darby’s came three months after his marriage to Steph Houghton, the England and Manchester City footballer, in 2018.
The deterioration in muscle and nerve function leads inexorably to death. Sometimes that comes within months, sometimes years. Yet more than anything, these three extraordinary men are united by an overwhelming positivity that defies the bleakness of the condition.
“Once you are diagnosed, you can accept the diagnosis, but not necessarily the prognosis,” Darby, 31, says. “It would be easy to just think ‘why us?’ and feel very sorry for ourselves. That’s just a waste of time. I tried to realise how lucky I am that I have got an amazing wife, family and friends, and tried to do something positive. You can try to make a difference.”
Just six days after his diagnosis, Burrow met Weir with his head still trying to process a blizzard of emotions and an overload of information. That encounter transformed his entire outlook.
“I don’t want to make you [Weir] cry, but you showed me the path,” Burrow, 37, says. “After that, I was so happy. He showed me the route to go down and I am doing my own version of that now, but it all starts with your positivity. I can’t thank Doddie enough for that. That was the single-handedly most important meeting of my life. I had very little knowledge when I was diagnosed, but having spoken to Doddie, I felt like I was cured. The information he gave me put me on this positive path. I followed your route.”
Then there is Weir, a beacon of both gaiety and righteous anger towards the scandalous meagre resources that have been devoted historically towards tackling MND.
“Literally nothing had been done for 30 years,” Weir says. “One of our professors said he was quite shocked with my attitude because no one had really spoken like that to them. I took the attitude that we might as well challenge you guys because we have nothing to lose. We found the professors when we brought them together were all working on their own little projects. It was like being at school, guys saying ‘don’t copy me because I want the highest mark’.”
Largely thanks to Weir’s single-mindedness, the wheel is finally turning. This year, three separate clinical trials are being launched, which will allow patients to undergo more than one treatment concurrently.
“It really feels like 2020 is a massive year,” Weir says.
At their meeting, they were joined by Sean McGrath, the medical strategy lead for the My Name’5 Doddie Foundation to explain the latest developments in research, including those three platform trials. It was also an opportunity to swap tips on effective drugs to deal with symptoms such as uncontrollable laughter, and everyday life hacks for MND sufferers.
Darby, especially, shares Weir’s frustration with the medical establishment, having had his NHS physiotherapy sessions halted.
“They said I didn’t need them,” Darby says with incredulity. “The conversations we are having here about other supplements you can take, you can’t have with the doctors because they don’t give you any information. They don’t give you answers or even help about little things that can make a big difference. So, you find a lot of strength and support from the MND community because they are going through it, trying different things and sharing their stories.”
Warming to the theme, Weir adds: “It is amazing that we are all self-curing, as I call it. Once we were diagnosed, we more or less said cheerio to our doctors because there’s nothing there for us. It was up to us to find a cure ourselves.”
Darby has his own foundation, which he set up with military veteran and fellow MND sufferer Chris Rimmer, and Burrow is researching launching his own. While keen to maintain the independence of their foundations, all three intend to collaborate to make sure their research is not overlapping.
“If we didn’t work together then we would be just as guilty as the doctors are in not talking to each other,” Darby says. “It would be a big waste of time if we organised everything separately. At least if we are in communication we know what’s going on and understand where we should be devoting research.”
Understandably, not every MND sufferer is prepared to publicise their illness, let alone allow the spotlight to extend to their families. All three make the point that they are taking a stand for all those who do not have the resources or profile to fund their own treatment.
“We’re not just doing this for ourselves, but for everyone out there,” Weir says. “Imagine Mrs Smith down the road, who might be in a flat on the top floor, and she gets told by her doctor that nothing can be done. That has to change.”
There is an uncomfortable acknowledgement that the sports which gave them that platform could also be responsible for their condition. Professional athletes are four times more likely to develop MND, which is typically associated with older people. Rather than harbour bitterness, all three are harnessing the same indefatigable attitude towards tackling the disease that they displayed during their playing days.
“Throughout your career, you come up against hurdles, whether those are personal or the opposition, that you have to get past,” Darby says. “This is another hurdle in front of us, just a bigger one than we have ever come across but it is still a hurdle and challenge that we have to take on. We will do everything we can to beat it.”
At 5ft 5in, Burrow, especially, is used to fighting against the odds, having made 493 appearances for Leeds over 17 years. He has also retained his dark sense of humour. After learning of his condition, he told the Leeds WhatsApp group to save him a place on the club’s memorial wall for deceased colleagues. “People ask why I am so positive, but listening to Stephen and Doddie you have to meet the challenge head on,” Burrow says. “This may be a challenge we cannot beat, but the sportsman in us has that competitive element to challenge everything.”
As soon as it hits midday, Weir is trying to persuade Burrow to drink a pint of Guinness. It is his personal pet project to get Burrow up to four pints of the black stuff. The bigger target is finding a cure for MND. Once total strangers, since bound together by fate and now united by a shared determination to fight a merciless disease. “One of the main things sport teaches you is that teamwork always brings the best results,” Weir says. “The more we do this, the more we galvanise each other and the stronger the fight against MND.”