In New York for recreation as well as medication, the Scottish rugby enormous sat down to discuss life with motor neurone disease and what hes doing to fight it

In a famed background from Living with Lions, the seminal documentary about the 1997 succes in South africans, Doddie Weir is told his tour is over.

” Ah well ,” says the big fasten, his eyes divulging a deeper ache than his frown as the doctor flexes his knee, smashed by some Mpumalanga stormtrooper.” We’ve had a good old-fashioned epoch of it, eh ?”

Twenty-one years later, in the bar of the Fitzpatrick Manhattan Hotel, at Lexington Avenue and East 57 th, Weir ruefully smiles again.

” It’s been a bit of a nightmare, having MND .”

The king of understatement is now 47. Eighteen years have passed since the last of his 61 detonators for Scotland. It’s 15 months since he was told he has motor neurone infection, shutting on a year since he broke the word to the world.

Weir Weir in action, for Scotland against Ireland in 1998. Photograph: Allsport

” I don’t know if you are familiar with much about MND ,” he says,” or ALS, as I guess it’s called here in America, or Lou Gehrig’s disease. It’s a muscle-wasting disease, so all the muscles in your person begin to stop functioning through the neurons stopping firing, so you eventually can’t move, you can’t promoted, you can’t withdraw, you can’t chew. You can’t breathe, because your diaphragm stops toiling. So your whole mas slams down eventually. It’s terminal, at the moment .”

Life expectancy is often two to five years. Weir was told he’d be wheelchair-bound in one. But here he is, sides debilitated a bit but still cheerfully steadfast. Later, at the New York Athletic Club, he takes govern of a benevolence auction. Reveling in hours of converse and horseplay, he invokes $8,000 for his foot with a shirt worn in Scotland’s November loss to New Zealand. He hurls in a bottle of special edition whisky- Doddie’s Dram– though he strives to hold it, then sells two more for $2,000 a pop, a racket echoed where reference is opens the bottles with their owners.

The room is full of laughter, fuelled by the genial monster in the” fashion tragedy” clothing made of specifically commissioned tartan.

” I’ve been looking over at wee Alex ,” Weir says into the mic, gesturing to where Alex Corbisiero, Lions prop turned US Tv legion, sits in his still-beefy primary.” And I’ve been thinking if I’d acted in the gym as hard-handed as he has, I might have longer to live .”

The room catches its breather. When it exhales, the din is somewhere between collapse and a sigh.


Weir still runs his farm in the Borders- he’s boasting a black eye dealt by one of his kine- but he has acquired other causes: survive and find a cure.

” In Scotland there’s only one dope for it ,” he says.” One medicine that came out 22 years ago. Basically you’ve got a death penalty. So my crusade at the moment is to try to get options for people who have this, so they have a chance. It might be a negligible likelihood but at least a better fortune than they have now .”

This is Weir’s second stay to New York in the last few months. The Colorado Clinic has an office in the city and can provide masitinib, an inhibitor medicine, which the NHS cannot. Weir has spoken passionately on the subject elsewhere. Here, in the bar, he speaks warmly of the clinic and of Brian Kennedy, the former Sale Sharks owner who is funding his journeys to the Positions for treatment.

He speaks warmly of others, more, from his fellow” rugby legend” and age-old English foe Jerry Guscott tying his collar in the elevator down-” he was the first lady I ascertained so I asked him”- to the forces that have dined, cycled, strolled or simply talked in its pursuit of My Name’ 5 Doddie, studies and research foot including his old shirt number.

” The assist is just unbelievable. Newcastle have been heavily implied”- last weekend’s game against Northampton at St James’ Park was held in part to help an age-old squad soldier, more than 30,000 verifying Weir amble the match ball out.” We had a Doddie Gump, which was an attempt to follow on from the Ice Bucket Challenge, which Rob Wainwright, my former team-mate, very kindly put together.

Weir Weir- in appropriate tartan- and his sons bring out the ball at St James’ Park last week, before Newcastle hit Northampton. Photograph: Chris Lishman/ Rex/ Shutterstock

” Our big-hearted finale was a walk in Italy which we recollected maybe 500 or 600 beings might do: I think there was 5,000 or 6,000 there. It’s just overwhelming, heartwarming and very difficult to explain. I’m just a Borders boy and a bit of a mode catastrophe. The passion and the reinforcement … it’s amazing.

He gives me a sharp-worded examination.” There was somebody who biked up for the Calcutta Cup match- I don’t know if you know but Scotland won that this year, for the first time in 10 times .”

I shake my head, Englishly.

” That was the first time I wore my Doddie’s tartan suit, it came out for that recreation. No? Don’t remember ?”

The tartan is memorable: blue-blooded and white-hot for Scotland, yellowish and pitch-black for Melrose, black and white for Newcastle. Still no, though.

” A guy cycled 500 miles from Twickenham to Murrayfield in two days, to raise money. That was quite a special day … when Scotland beat England, aye. Still no ?”

He laughs, attentions my Guinness enviously, takes a gulping of ocean. Weir has always been a glass-half-full sort of chap. Now, it turns out, it’s literal.

” Boozing a jug ,” he says,” I can’t contain it too long. So I suck half of it firstly to represent the glass a little bit lighter.

” A chiropractor I go to has be awesome. An pattern of his thinking is, instead of sucking out of a straw because your hands are weak, you’ve got to lift and drink the pint. You use, “were losing”. You’re really telling MND you’re no gonna winning .”


And hitherto, forbidding some medical breakthrough perhaps is assisting My Name’ 5 Doddie, MND will win. Not long before our join came the end of the most famous occasion of all, with the death of Stephen Hawking at 76, 55 times after diagnosis. Weir accompanies Hawking as justification- as evidence- for hope.

He and his wife Kathy have three sons, Angus, Hamish and Ben, all in their teens. They accompanied him on to the pitch at Murrayfield in November before that All Blacks epic, then again at St James’ Park this month. He’s determined to see them grow. Nonetheless, life has acquired brand-new urgency. Long-held schedules have been has been put forward. Last-place time Weir took his family to New Zealand to watch the Lions. The next purport is the World Cup in Japan next year. Two times after that, the Lions in South africans again. This week, his eldest legislated his driving experiment-” second epoch, mind”- and another longed-for epoch was done.

Doddie Weir gives the pair dance for Scotland v New Zealand in Edinburgh in November.

Weir has said he does not joins his MND to the blows and batterings of a top-flight rugby career. But it has taken musicians before. The Auckland and London Irish back Jarrod Cunningham learned he had the disease in 2002 and died 5 years later. The enormous Southern african scrum-half Joost van der Westhuizen was diagnosed in 2011. He croaked last February. Weir is talking to Van der Westhuizen’s foundation” about staging an occurrence in South Africa “.

He laughs, thinking back to that day with the Lions in’ 97.” Maybe do it in Mpumalanga, yeah … that’d bring back some, well, some remembrances. I might not say good …

” Joost went through a lot of drugs and one thing or another and a lot of testing and I’m not really doing that at the moment. There’s a lot of work been done since Joost was about into what’s working and not working. There’s a lot of bandwagon-ing about’ this will work’ or’ this will medicine it’ but it doesn’t work, which are able to cruel to the person with MND. So my mob are saying,’ We’ll not do that .'”

A A walk in New York. Photograph: Richard Sexton/ Instagram

Weir is not relying to fortune- as suggested by the expeditions to New York for management- but he contends more than once “he il be” luck, quoting cases of parties diagnosed a few months and dead the next, leaving spouses and young children.

” I wouldn’t say it’s been a wonderful excursion ,” he says.” I possibly knew something was incorrect for a year or so before my diagnosis. But in a manner that is, yes, I am luck. They say two to three years is a lifespan with this. And in that time, I’ve never been invited to so many defendants .”

His laughter, like mine, is fuelled more by exuberance than sorrow. And before the five-block walking to dinner through a chilly Manhattan dusk- he brandishes away all furnishes of an Uber- there is time for a theoretical turn.

” I never, ever recollect I want to be someone else ,” he says.” I’m not that religious but there are certain things that have happened in “peoples lives”. I crashed my auto 15 years ago, a real bad shattering. But I anticipate Him upstairs took a sound and said to Himself:’ I necessary a rugby participate, who am I going to get? Weir? Ah, you’re not good enough so I’ll just let you crush your automobile and you can live.’

” My brother-in-law, he was 54, he was found on the bathroom storey. So I was seeing maybe the big-hearted person required a shepherd.’ Michael Dun, you’re the one, come upstairs .’ So again, I’m not religious but perhaps the large-scale son has told us:’ Right, you were lucky with your gondola accident, move style this MND/ ALS out, realise what you can do .'”

Doddie Weir’s philanthropic foot is myname5doddie. He was in New York with Captain’s Knock, a networking group with a philanthropic focus.


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