Doddie Weir on MND: ‘Its hard to look ahead but I’m lucky’

‘Just make sure you’re not nice about me,’ says Doddie Weir, as we stand to say goodbye after a long chat, ostensibly about his mortality.

His mood has mostly been as bright as his trademark tartan suit, but now there is a tear in his eye, as well as a sparkle, as he offers a hand the size of a frying pan to shake before he goes.

The grip is still fine, if weaker than it once was. ‘People being nice is what gets me the most,’ he adds.

Former Scotland and Lions lock Doddie Weir revealed he had motor neurone disease in June

In June this year, just short of his 47th birthday, the 6ft 6in former Newcastle, Scotland and Lions lock revealed he had motor neurone disease.

MND is a rapidly progressing terminal illness that effectively stops brain signals reaching the muscles. Also known as amyotrophic lateral sclerosis (ALS), it causes wasting and later paralysis, and thus difficulty with speech, swallowing and ultimately breathing.

Scientist Stephen Hawking is the world’s best known MND survivor, living with a rare and slow-progressing form of the condition for more than 50 years.

Lou Gehrig, the New York Yankees baseball star of the 1920s and 1930s after whom MND/ALS is also named – as Lou Gehrig disease – was more typical in surviving just three years before succumbing aged 37.

That was in 1941, and the causes of MND are not much better understood today. Nor is there any more imminent prospect of a cure.

On a drizzly Friday afternoon in Glasgow, in Weir’s first newspaper interview since announcing his condition, he explains how, in fact, he actually received his own bleak prognosis last December. That in turn had come 13 months after he first noticed symptoms, in November 2015.

Weir (with wife Kathy and youngest son Ben) does not want sympathy about his condition

Weir (with wife Kathy and youngest son Ben) does not want sympathy about his condition

‘I caught my hand on the door at home and I thought I’d broken my arm,’ he says. ‘I thought “Ach it’ll be fine on Monday” but with that I lost a bit of strength.

‘Two or three months later I thought things were starting to get better, but my skin started to twitch. Again, I just thought it would be okay, but after some intermittent twitching I went to the doctor in about July or August to start the process.’

That process itself was drawn out. There is no single test that can identify MND. Only via a range of assessments over time can a neurologist confirm it.

Weir had a brain scan when his hand weakness and itching persisted. He jokes the medics couldn’t find a brain, so did a second MRI, which was inconclusive. Blood tests then came up clear. Screening dyes in his circulatory system proved nothing, nor did ‘shock testing’ with acupuncture equipment.

 Weir made sure the news did not break until he was in New Zealand on holiday with his family

 Weir made sure the news did not break until he was in New Zealand on holiday with his family

Next up was a lumbar puncture, also known as a spinal tap, where a thick needle was inserted into his spine to collect cerebrospinal fluid. 

‘That was pretty sore … it took a bit of doing,’ says this towering unit, who won 61 Scotland caps and was famously once eulogised by commentator Bill McLaren as being ‘on the charge like a mad giraffe’.

On and on went the tests, until the day in December when a consultant dropped the bombshell Weir had been fearing. As he puts it: ‘It got announced to my good lady Kathy and I that this is what we were facing.’

Weir, a very proud Scotsman known for his love of tartan, was diagnosed in late 2016

Weir, a very proud Scotsman known for his love of tartan, was diagnosed in late 2016

He pauses, as he does several times whenever talking about wife Kathy and sons Hamish, 16, Angus, 15 and Ben, 13. ‘We were a bit coy about it for a long time. I had a look on the internet and they say that’s the worst thing you can do because immediately I thought “Right, you’re in a bit of trouble”.’

Anyone who has endured the dreadful experience of receiving a terminal illness diagnosis, or a loved one doing so – not least when fit, otherwise healthy and relatively young – will appreciate the devastation.

Weir’s situation was further complicated by two things. Firstly his mother Nanny was seriously ill with cancer. He didn’t want to tell her, before what the family believed might be her last Christmas, he was terminally ill.

Secondly, as a much-admired sportsman, lionised well beyond Scotland, he knew making his condition public would bring attendant pressure, not least on son Hamish, due to take his important Highers exams in summer 2017. Hence initially he and Kathy did not tell anyone, even their boys.

As it transpired, Weir’s mum missed the family Yuletide, hospitalised, although she has rallied since. (‘Still here being narky, which means she’s fine,’ jests Weir). Doddie and Kathy gave their sons the news in January.

‘We sat down and said this is where we are and this is what we’ve got,’ he says. ‘We explained it without going into too much detail.

’The boys have been absolutely cool about it. The oldest one has a bit of an understanding of it because he’s maybe Googled it. On the odd occasion he gets quite upset when we’re out in public with people coming to talk to me, but the other two haven’t said much – but we don’t shy away from what I have and where we are.’

Weir enjoyed a successful rugby career, including winning the Premiership with Newcastle

Weir enjoyed a successful rugby career, including winning the Premiership with Newcastle

Weir had long promised his sons he would take them on an extended holiday to watch a Lions tour. Pre-diagnosis he had his eye on the 2021 Tour to South Africa, the country where he made his own Lions debut, in 1997, when he suffered a horrific knee injury while on duty. ‘That may not be possible,’ he says.

Instead, the family spent six weeks this summer following the Lions in New Zealand. News of his illness was deliberately released just as they took off, so he could spend a day in the air away from calls and texts while the shock sank in for the rugby family. Weir jokes he also couldn’t afford to accept too many condolence messages.

‘I took my sim card out my phone because I couldn’t work out how to divert my calls and being tight like I am I thought I’d get charged an absolute fortune!’ he says. 

‘People in New Zealand were wonderful. The support we have had is amazing, and still is. For a numpty from the Borders to get so much support is quite overwhelming.’

A 'night of laughter' in the famously good humoured Weir's honour has been organised

A ‘night of laughter’ in the famously good humoured Weir’s honour has been organised

Overwhelming perhaps, but no surprise to those who followed Weir’s career as it arced, like his sport, from being resolutely amateur into the era of professionalism.

His good humour is legendary. After the brutal karate kick from Marius Bosman smashed his knee and ended his 1997 Lions involvement he purchased a hedgehog-shaped shoe-shine block he named Marius to keep outside his home at the time in Newcastle. He kicked it daily.

Newcastle embraced the monied era, funded by Sir John Hall’s millions. Led by director of rugby Rob Andrew and alongside team-mates including All Black Inga Tuigamala, England’s Tony Underwood and a young upstart called Jonny Wilkinson, Weir won the 1997-98 Premiership.

More challenging times lie ahead, and Weir has already seen first-hand how a fellow pro can be afflicted by MND. It wasn’t so long ago that he was at Murrayfield when he bumped into Joost van der Westhuizen, the Springboks scrum-half who won the World Cup with South African in 1995. He died in February, aged 45, having been diagnosed with MND in 2011.

‘It was quite tear-jerking to see,’ says Weir. ‘A boy who used to run around a lot of rugby players, couldn’t even really get his drink to himself. That’s the humbling part of it. That’s my prognosis down the line and that’s the bit we’ve got to try and make a difference.’

Weir played with Scotland at the 1991 World Cup and toured South Africa with the Lions

Weir played with Scotland at the 1991 World Cup and toured South Africa with the Lions

So to what Weir hopes to achieve with whatever time he has left – raising awareness and hopefully funds that will nurture research into a condition that afflicts just two people per 100,000 in the UK, or a relatively small figure of about 5,000 people at any one time.

Weir explains that there the most common medication – arguably the only one – for MND is a medicine called Riluzole, which is now 22 years old. It is not a cure, or a significant life extender, but it can help sustain quality of life for some patients.

Weir is frustrated doctors cannot tell patients to try other things. ‘Because there’s nothing there, and that’s annoyed me a little bit,’ he says. ‘There are only 450 people in Scotland who have MND and drug companies don’t want to get involved because it’s not financially viable.’

One major fund-raising event on the horizon is being organised by long-term friends including former Scotland team-mate Kenny Logan. Billed as a ‘Night of Laughter’ and to be hosted in Battersea, London by Logan’s wife Gabby, on Monday 6 November (details on the website at the foot of this piece), it promises to be a celebration of Weir’s life as well as way to collect donations.

‘The rugby world, the rugby public have been overwhelming supportive,’ Weir says. ‘Kenny Logan especially. Him and his good lady are organising this massive dinner at Battersea. He was first on the phone and it was quite a difficult conversation. We’ve had a lot of times together, and ultimately my goal is for that to continue.

‘I’m still here. If I was to go back on my life, I’ve had one of the best ones. No regrets. I was in a national team age 18, 19, travelled the world for 14 years, met a lot of lovely people in the amateur days which were totally different. All at someone else’s expense, which is always good.

‘Not being able to look too far ahead now – that’s the sad part, but I wake up in the morning and think, right let’s get on. I’m lucky. It’s been nine months, heading for a year since diagnosis and I can still speak, and drive, and eat.’

Weir feels sad at not being able to look to far ahead but is very determined to get on with life

Weir feels sad at not being able to look to far ahead but is very determined to get on with life

He is less enamoured of people being kind to him, whether it’s a fan in the street who hands him a fiver for research or old pals, whose friendships were built as rugby team-mates, offering him support in his darkest hours.

He describes some of his calls with these friends, not least Scotland allies Carl Hogg – now head coach at Worcester – and Logan, as ‘difficult’, at least when he told them the news.

‘The emotional side of things has definitely changed,’ he says. ‘Being a farming, rugby boy, you didn’t really ever show emotion, but certainly within my very close friends who phoned me up – Carl was one, Kenny was another – we couldn’t quite finish the conversation. It was: “Right, okay, I’m going to have to phone you back”, because I was getting emotional.’

On the flip side, or perhaps the flippant side, his old rugby lifestyle continues, at times, to offer release. He can still drink, and party, and did in New Zealand. ‘I’ve never been told not to,’ he says. 

‘I struggle to hold a pint glass now, so I need a table to put it on! And there was an issue with a blood test when I came back from New Zealand. I kind of semi-failed it. Certain things went up and I had to go back and get it checked again… but that was 40 days on the drink! Every day was a drinking day.’

There was a low point when they returned, due mainly to the holiday being over, literally, and the boys going back to school, and the next phase of his life to contemplate. As long as he can, he will continue work on his farm, if only to keep active.

‘If you don’t use it, you lose it,’ he says. ‘Keep on going. Because when you sit down and let it get to you, you disappear. I’ve always had a positive outlook. Do what you can do today and worry about tomorrow when it comes. If it doesn’t come then you’ve a bloody good time and that’s my sentiment since I was 19.’

For information about Doddie Weir’s fund-raiser, click here.