EXCLUSIVE: Doddie Weir on why he won't stop fighting for MND sufferers

EXCLUSIVE: ‘I’ve had a few laughs at death’s expense, but I don’t want to go just yet’: Doddie Weir tells Sportsmail he hasn’t lost his lust for life (or red wine)… and why he won’t stop fighting for all MND sufferers

• Former Scotland lock Doddie Weir suffers with Motor Neurone Disease (MND)
• But the great man has not lost his lust for life , or Guinness and chocolate buttons
• And the 51-year-old OBE has vowed to continue the fight for all MND sufferers 

Those famous hands and arms are no longer working properly. The feet, by his own admission, struggle to take more than a few steps before he needs help.

Thank God, then, to see that at least one thing hasn’t changed when Doddie Weir greets me at his beautiful home in the Borders… the unmistakable twinkle in those mischievous eyes.

‘Rob, my boy, my favourite,’ booms the great man, eyeing the packet of white chocolate buttons in my hand as I walk through to his den where he’s sitting in his favourite chair. ‘Bring them in here and let’s get stuck in.’

Doddie Weir talked to Sportsmail about retaining his lust for life – as well as Guinness and wine

His new book ‘Doddie’s Diary’ is his third, after his autobiography (above) came out in 2018

My relief at finding Weir in this kind of form is almost palpable. It’s now more than four years since he was diagnosed with this cruellest of conditions… Motor Neurone Disease (MND).

The toll it’s taking on him is obvious. It’s unbearable to see how MND is stripping away this giant who once strode the world’s rugby fields like a colossus. Yet the good humour, the sheer love of life, never seems to disappear.

I look down at the chocolate buttons. To think it had briefly crossed my mind before I walked in the door that he might not be able to eat them.

His medical team, he explains, have recommended he eats a high-calorie diet to keep the weight on him. ‘So it’s lots of cream in my porridge, lashings of butter on my toast and pints of Guinness,’ he says, ‘and I drink my body weight in red wine. I’m not sure it’s medically proven to help but, what the hell, I’m loving it.’

His kitchen table is full of a variety of tasty treats like shortbread and other biscuits which his beloved dogs Zena, a seven-month-old black Labrador and 14-year-old terrier Mavis continually try to grab, only to find just out of their reach.

In the den just off the kitchen, Weir is sitting with a smile on his face and a glint in his eye. In front of him is a massive television screen.

Tall lock Weir, 6’6″ and 17 stone in his pomp, was a fine competitor for Scotland’s rugby team

‘You’ve just missed my favourite TV show, Hawaii Five-O,’ he says. ‘And The Professionals. Love The Professionals. Bodie and Doyle. Martin Shaw and Lewis Collins. Great actors. Top stuff.

‘I love that and all the sport. My emails are shown up there, too, on the TV and I get help replying to them. That television is my mission control centre.’

On the windowsill is a picture of Weir with Billy Connolly and Gavin Hastings at a charity dinner in Hong Kong. On the wall, a picture of a Highland cow done up in Doddie tartan. There’s a photo of a rugby referee with Weir’s head superimposed, sending somebody off. Nearby is a fireman’s helmet, again covered in his own tartan.

In the cupboard he tells me to open, there is a magnificent whisky collection. ‘I’m proud of that lot, Robbie boy,’ he admits. His Guinness is on a table. ‘Told you I was on a drink-all-the-Guinness-I-can type diet,’ he laughs. 

‘I have to drink it through a straw that’s held for me but it’s my favourite tipple. And the red wine is over there somewhere. I used to go for the £3 to £6 bottles. Now, with time not on my side, I go for the £6 to £9 bottles. I’m going posh and expensive. Enjoy the best while I’m still here.’

Who can blame him for looking to enjoy the good things in life as his battle continues with a disease for which there is no known cure.

Weir received an OBE, with his family present, from Queen Elizabeth II in Edinburgh in 2019

‘Can I ask about your thoughts on dying?’ I offer, uneasily. ‘On you go, Rob. It’s going to happen to us all,’ replies Weir. ‘I don’t mind at all. I understand the reality of the situation although, in saying that, I’m not accepting I am going to die anytime soon.

‘I’m quite stubborn and a couple of years ago it was suggested I get a peg, a sort of feeding tube, in my tummy but I didn’t want it. The same with sleeping with oxygen. That was suggested, but not for me. I am still in the game. Not at either stage yet.

‘I haven’t arranged my funeral or anything like that but I have had a few laughs at death’s expense. I am big mates with Robbie Brown who’s an undertaker down in Melrose and he’s doing my funeral. When he was up, he asked me if I wanted to lay down flat in the back of his hearse to see if it was big enough for me to get in.’

The conversation is non-stop. Weir needs help to walk and, whenever he has to get to his feet, devoted wife Kathy comes to his aid. 

I’m reminded that Doddie needed stitches in his head after a fall following a visit to his chiropractor back in February.

He knows he is dying but has no desire to gently go into that good night: ‘I’ve had a good life, I’m still having a good life. I am blessed. I have a fantastic family and friends round me all making my life better. Who could ask for more?’

He also received the Helen Rollason Award at the BBC Sports Personality of the Year in 2019

The day I visit, his niece has come all the way down from Cupar in Fife to help out. His son Ben is also on hand. In one of the barns on the 300-acre family farm there are two ladies helping Kathy before she goes up the fields to look after the sheep.

Wearing a British and Irish Lions T-shirt, she is the glue that holds Team Doddie together. Kathy is his rock and the couple celebrated her 51st birthday recently.

‘My arms might not work really anymore, my feet struggle to take a few steps without help and my head is at a jaunty angle as my neck isn’t terribly strong, but look around you, Rob,’ he says.

‘These people, and lots like them who work for the charity to raise funds for MND, I have so much to thank them for.’ A tear appears in his eye as he finishes his sentence. ‘I do get emotional about it all. It’s humbling to see the love out there.’

We’re here to ostensibly talk about his new book — written with close friend Stewart Weir — which chronicles the last few years in diary form.

‘I look back in the book but look forward in life,’ insists Doddie. ‘For me, these books are chronicles of my life. One day my family will look back at them, get them down from the shelf and I like to think feel proud of me, but I’m not going anywhere for a while. I have so much to live for.’

He appeared on BBC Breakfast with fellow MND sufferers Stephen Darby (l) and Rob Burrow (r)

Then the face beams as if a light has been switched on when he suddenly says: ‘In fact, come and see round the farm on my buggy. It’s my chariot. Let’s go and see how I live in such a beautiful place. It’s one of the reasons why I don’t want to die anytime soon. You’ll have to drive, though.’

He gives a call through to the kitchen to Kathy as he can’t get out of the chair on his own. They have their own double act of finding the balancing point for him to stand up. She leans back, then one-two-three, he gets up and sets off on his way out the door holding her hand.

The last time I was here over a year-and-a-half ago, Doddie was able to drive an engine-driven dune buggy-type vehicle and we enjoyed running around on it. He can’t get in and out of it now. Thank goodness, then, for the little electric golf buggy which provides easier access.

‘I am in a worse condition than five years ago but I bet you’ve got a few more aches and pains, too,’ he says. ‘I am going downhill, yes, but not rapidly.’

As I cautiously drive my precious cargo out of the farm, my phone rings. By chance, it’s Craig Chalmers, Scotland’s 1990 Grand Slam fly-half. Doddie notices the name on my screen and demands I put the call on loudspeaker. 

‘How you doing, Craigie boy?’ asks Weir, delighted to speak to his old pal. They chat for five minutes, full of laughter, before bringing the call to an end.

‘People ask maybe why I have lasted longer since my MND diagnosis than others,’ says Doddie as we drive through the beautiful Borders countryside. 

‘A lot of it is luck, stubbornness, having a never-give-up attitude that I got through rugby. A lot of things like that. Keeping my mind sharp and having a focus in trying to raise funds and find a cure for MND. Also the surroundings. On a day like this, is there anywhere more beautiful?’

It’s hard to argue with as I try not to brake too suddenly in case the big man takes a tumble.

‘I am taking my life in my hands with you, you’re an awful driver,’ he laughs. ‘You’re trying to kill me off early! That’s reverse, not the clutch!’ 

Satisfied I’m not about to crash, he continues: ‘I don’t want to go just yet. There is so much I have done but there are things I still want to do before I go.

‘I have seen one of my boys playing for Melrose Under-18s and the other for the full Melrose team, although I have to bring my chair along to sit on to watch. I’ve seen the back of my 50th birthday and Kathy’s 51st.

Weir went to Holyrood to push for easier access to the Blue Badge Scheme for those with MND

‘I don’t want to be a grandad anytime soon but it will be lovely to still be here to see the boys settled with some nice ladies sometime in the future. And the Foundation has raised so much money for MND research. I’m not stopping now.’

He tells me to stop the buggy and take a moment to appreciate my surroundings. Weir looks over the fields as the autumn sun beats down and he reflects on when he was first diagnosed.

‘Remember I met you outside the tartan shop in Edinburgh just after my diagnosis?’ he says. ‘Back then, MND had just entered my world. It was hard to take. Would I have expected to be driven badly round here by you five years later?  

‘Probably not, but here we are. It’s not going to get any better, I know that, but I am still here. I might end up speaking through that thing Stephen Hawking used to use to get his words out. Who knows? All I know is I am still here and there is much to do.’

His mood never darkens completely but a frown appears when I ask how MND sufferers are treated. ‘Not as well as we should,’ he says. ‘Nothing has really changed with this disease since you and I met when I was first diagnosed. ‘One drug came out 30, 40 years ago. That leaves me both angry and frustrated. 

‘One of my first questions to the scientists was: ‘You have been involved in this for 25 years, what have you been doing?’ One said he would make a difference in five years’ time. He said that three years ago, so now he has two years left. I am on top of them and appreciate their efforts. They are trying hard.

Weir has admitted he still loves watching his beloved Scotland play rugby on the television

‘MND sufferers are looking for drugs to help them live out their final days with a better quality of life and find a cure, which is why I will keep looking for ways to make things better. Myself, Rob Burrow, everybody who suffers from MND needs to be given a chance.

‘A cure won’t come overnight but we need to keep doing the science and investing in research and try to give people who have been diagnosed a decent quality of life.

‘Will a cure come in my lifetime? I am not sure. It could be five years away with a bit of luck but who knows. What I do know is trying to find a cure, the love of my family and friends and being here on this farm keeps me going and will do right to the end.’

As we head back to the house, he reveals he’s had a few aqua aerobics classes with Scotland 1990 Grand Slam legend Gary Armstrong. The image of the pair of them exercising to disco music in the pool in their Speedos makes me chuckle.

‘You should see us in the water trying to be co-ordinated and me bobbing up and down,’ he smiles. I say to him most of Scotland’s sporting community would pay good money to see them doing it together. ‘For a donation to my Foundation that can be arranged, but don’t tell Gary,’ he laughs.

As we head back to his farmhouse, he hopes to see me back some day. ‘I’ll still be here, Rob, bet your bottom dollar on that. Maybe in the New Year?’ He notices the look on my face. ‘I know what you’re thinking but, yes, I’ll still be here. Doddie’s not for the knacker’s yard just yet.’

‘Doddie’s Diary’ by Doddie Weir and Stewart Weir, with a foreword by Gregor Townsend, is published by Black and White Publishing and is available now. 

We are the My Name’5 Doddie Foundation and we are absolutely committed to our vision of a world free of MND, leaving no stone unturned in our relentless pursuit of this goal. 

For more information go to https://www.myname5doddie.co.uk/

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