The former Scotland lock urges doctors to raise the intensity of research into MND, even as his own life becomes more challenging for he and his wife, Kathy
Donald McRae
@donaldgmcrae
Tue 21 Jun 2022 08.00 BST
Last modified on Tue 21 Jun 2022 08.26 BST
“I’m still here, I’m still fighting,” says Doddie Weir even though motor neurone disease traps him inside his paralysed body. Courage and hope define Weir but he is being tested as never before. The former Scotland lock, who won 61 Test caps and played for the Lions on their triumphant tour of South Africa in 1997, was diagnosed with MND just before Christmas in 2016. He has now reached a brutal stage of deterioration.
Weir once gave a talk and asked his audience to sit on their hands. Everyone was then given a glass of water. To take even a sip they had to ask someone else to lift the glass to their mouths. When people eventually asked if they could free their hands Weir, with a trademark grin, would not give them permission.
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It was the simplest insight he could offer into how it feels when you cannot scratch your nose and you cannot feed or wash yourself or go to the toilet without help. Even swallowing and talking become difficult. This frightening paralysis has robbed Weir of so much but his intelligence burns as brightly as ever.
He and his remarkable wife, Kathy, still swap quips laced with black humour. Weir also retains the campaigning zeal which has seen his foundation – My Name’5 Doddie – raise £8m in the battle against MND while he challenges doctors to increase the intensity of their research.
But he admits, “It’s a lot harder now. I’ve got a lot slower. I am totally dependent on other people doing everything for me.”
His speech is now badly affected by the disease and I sometimes have to ask him to repeat himself or Kathy explains what he has just said. But the clarity of his thinking is unimpaired. “It’s frustrating not being able to do everything I enjoy,” Weir continues. “That’s difficult – and it’s even harder when I have to ask Kathy to do everything for me. But I know how lucky I am with my amazing family and team.”
He cannot turn his head in the kitchen on their farm near Galashiels, an hour from Edinburgh, to glance out of the window. But Doddie can feel the warmth of the Scottish sunshine on his skin. “I’ve been thinking how good it is today,” he says, “enjoying the lovely weather when many people with MND don’t have that luxury.”
It is different at night when he lies in the dark, unable to move. “I can’t even turn over in bed. It’s like an alarm going off in my toes and I have to tell Kathy to turn me over every two hours.”
They were together on the terrible Friday afternoon of 23 December 2016 when a specialist delivered the shattering diagnosis that Doddie had MND – and predicted that he would be unable to walk within a year. The former player, who had retired in 2004, defied that prognosis for over four years as he showed the galloping determination which, when he first played for Scotland, prompted the great commentator Bill McLaren to call him “a mad giraffe”.
Doddie had Googled his symptoms and warned Kathy he might have MND. “That was due to my rugby. Before every game I always expected the worst. So I wasn’t shocked.”
Kathy shakes her head. “When Doddie first mentioned he might have MND I thought: ‘Absolutely not.’ So it was a big blow and I went through a period of shock and grieving. I’m not moaning because we were lucky and made the most of what we could do. We’ve packed a lot in.”
Last week Doddie and Kathy went to the 25th reunion of the Lions tour of South Africa. All the players’ wives and partners were included at the emotional gathering in Stratford-upon-Avon which meant Tom Smith’s widow, Zoe, was also there. Doddie had been close to Smith, the Scottish prop who was such a revelation in South Africa but died from colon cancer in April. “It was so sad Tom wasn’t there,” Kathy says, “but it was lovely to see Zoe. She’s amazing.”
Doddie says quietly: “She’s so strong.”
He started in three of the Lions’ first four games in 1997 and might have been on course to partner Martin Johnson in the Test side at lock. But against Mpumalanga he was stamped on the knee by fellow lock, Marius Bosman. Doddie’s tour was over but he bought a shoe-cleaner in the shape of a hedgehog on his early return to the UK. He called it “Marius” and gave it a cheerful shoeing every time he came home with muddy boots.
That attitude epitomises how he and his friends Rob Burrow, the former Leeds rugby league player, and Stephen Darby, who played right-back for Liverpool and Bradford, have fought against MND. When I interviewed Burrow last year he stressed how Doddie had been the first person outside his family to whom he turned once his MND was confirmed in 2019. Burrow was inspired by Doddie to “accept the diagnosis but fight the prognosis”.
For Kathy, “That’s their mentality as rugby players. So that helped me accept it, too. I thought: ‘There’s not much point crying. We’ll just get on with it.’”
Five years ago, Doddie stresses, “there was literally nothing in terms of any MND campaign. It’s different now and amazing how much support is out there.”
So much of that support has been generated by Doddie as he is now a leading MND campaigner. It is Global MND Awareness Day on Tuesday but is this incurable and terminal disease understood more now? “It is definitely getting better but the government has not given MND the money they promised.”
Last November Boris Johnson committed £50m to transform MND research. Has any of the money been forthcoming? “No,” Weir says. “They’re making it very difficult. The current process for accessing the money is just not delivering for the MND community. It needs to be streamlined or the professors will spend their valuable time writing multiple applications instead of tackling MND. When Boris talked about transforming the fight against MND we believed him, he gave us some hope, but the money needs to be made accessible. Maybe he’d like to visit one of the research centres and see what we mean?”
Doddie has criticised some of the medical experts working in MND. He points out there has been only one drug to treat the disease for more than 20 years while multiple Covid vaccines were developed within less than a year. “They’re not quick enough,” he says. “Even if they’re aiming for progress within two years we will be lucky if I live that long. We had a meeting with the top [MND] professors and they asked me: ‘Do you think we’re making a difference?’ I said ‘No’ because from a patient’s point of view there’s nothing new on the table. On their side they feel they are making a massive difference because there are about a dozen clinical trials now. I just told them straight from a patient’s perspective. I think that’s why they maybe don’t like me. But I’m very lucky. I’ve got an open door to all the professors. We should think of those patients where no one’s helping them. I’m trying to reach that person.”
Apart from striving to help others less fortunate than him, Doddie tries always to look forward. “It will be our 25th wedding anniversary on 18 July,” he says. “That’s something to celebrate.”
Two weeks earlier, on 4 July, he will turn 52. “I think people on the committee [of his foundation] thought I would be long gone by now,” he jokes.
“When we started the foundation it was just a group of friends that got together to raise awareness and some money for research,” Kathy says. “I don’t think anybody had any idea how it was going to become such a big thing. His friends were saying: ‘He’ll have six months and then that will be that because he’ll not be here any more.’ It’ll be six years soon.”
We make jokes and laugh a lot. You’ve got to do that
Kathy Weir
Death might stalk him but Doddie suggests that “every day is a learning day. When I was playing rugby and in business [installing septic tanks] I always thought of it as a game of chess. You make a move forward to stay in front. I try and stay in front of MND every day.”
For Kathy, “Doddie thinks a lot more than me. He’s always thinking about his next move and I just go along with it. We make jokes and laugh a lot. You’ve got to do that …”
They know Doddie’s world is shrinking. “We went to Geneva about a month ago,” he says, “and a lot of my friends made a huge effort to get me there. But it was very stressful. I had to be carried on the plane and it’s too difficult now.”
As his speech declines he sometimes uses a voice app, Eyegaze, which allows him to stare at a screen and pick out individual letters to type words and sentences slowly. He then gazes at the send button to transmit a recorded version of his words.
“It gives Doddie so much more independence,” Kathy says, “and it means I can go outside and he can send a message saying: ‘Can I have a Guinness?’ So I don’t have to be with him constantly. He can also use it to change the channel on the telly or go online. He likes to know what’s going on at the local farmers’ market with the cattle and sheep auction.”
“I’ve got my betting too,” Doddie adds.
Kathy rolls her eyes. “He’s got a betting account. But he’s run out of money on it and I refuse to top it up.”
Doddie, who has just 38p left in his betting account, becomes more serious when explaining that he avoids discussing death. “I don’t talk about that because I’m trying not to go there.”
He is determined to keep living so that he can see each of his three sons, aged between 18 and 21, settle down with a steady girlfriend. Hamish, Angus and Ben are good-looking boys but none of them is currently in a relationship.
“It’s a lot of pressure on them,” Kathy says wryly.
Topic: Doddie Weir Article - Guardian (Read 710 times)
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