Motor neurone disease-UK

I’ve been punched by Martin Johnson, elbowed and stamped on but nothing compares to being told I had MND.

MND. I have taken some right old shots in my time – a punch from Martin Johnson, an elbow by Wade Dooley, a stamp by Marius Bosman which ended my Lions tour in 1997. But, let me tell you, nothing compared to that day nearly two years ago when my doctor uttered those three letters and told me I had Motor Neurone Disease. One of the questions I have been asked most frequently since is ‘has your outlook on life changed?’ Well, I can honestly say that it hasn’t. It has brought us closer together as a family and it has made buttoning up a shirt a damn sight more difficult, but in terms of the way I have tried to live my life nothing much has changed. I still wear horrendous tartan suits, tell even more horrendous jokes and enjoy the odd beer or two. I have never had time for regrets. I’ve always tried to say yes to everything. Do what you can today and then worry about tomorrow when it comes. This is a philosophy that goes back 27 years to when I was a lanky 19-year-old coming into a Scotland camp for the first time. I remember how nervous I was to make a good impression. We had a fitness test early the next morning so I was tucked up in bed at 10pm with a cup of cocoa. Then Gary Armstrong, the great scrum half who was my roommate, comes in and says, “Night out. Let’s go.” Of course, the fitness test was horrendous but it was worth it. There’s no such thing as a bad party. I don’t want to make light of MND, which is a cruel and horrific disease. Basically your brain signals can’t reach your muscles that causes them to waste away to the point of paralysis. It is a terminal disease with no cure and no timetable.

Doddie Weir in tartan suit

This time last year I was told that I would be in a wheelchair within 12 months, but I’ve been incredibly lucky. I know a boy who was diagnosed in April and was in a wheelchair by August. In my case, it has mainly affected the grip in my hands. Doing up buttons, as I mentioned, is a challenge. So is holding a pint glass. In the old days, I could carry four pints across a crowded bar without spilling a drop. At least I have got a readymade excuse to avoid getting a round in. Those inconveniences aside, it has not greatly affected my day to day to life. I still do everything I previously did. Farm life doesn’t allow you to feel sorry for yourself. Here we have got animals to feed, drains to sluice, fences to restore. I like to keep myself busy and I still work for Hutchinson’s sewage company. That brings you down to earth. A couple of days after I had this big fancy do thrown in my honour and I am cleaning up what you had for your tea. I first noticed the symptoms when I caught my hand on a door at home back in November 2015. It hurt a lot but that wasn’t too unusual. It became strange when I started to lose a bit of strength in that arm. I tried to shrug it off but then my skin started twitching. There is no single test to diagnose MND. It is effectively a process of elimination through dozens of tests. I had brain scans, blood tests and even a spinal tap, where a needle is inserted directly into your spine. Let me tell you that stings. This all happened over several months so you know full well what they are testing for and what it could be. By the time the diagnosis came, it wasn’t that much of a surprise but that didn’t lessen the impact. As it was just before Christmas, me and my good lady wife, Kathy, didn’t tell our boys, Hamish, Angus and Ben. My mum was also not doing very well at the time but she’s pulled through. We eventually told the boys last January. We didn’t try to sugarcoat it: we said this is what it is and this is what will happen. I am so proud of how they have dealt with it.

Doddie Weir holds rugby ball

Then came the decision of when to go public. We considered announcing it during the Six Nations but then one of the boys had exams. As a family we had always planned to follow the Lions to South Africa in 2021. I would still dearly love to go through with that but we had to accept that I may not get that opportunity. So we brought that plan forward four years and decided to put out the press release while we were in midair, which just so happened to be during MND week. When I switched my phone back on, I thought it was going to explode with the amount of messages I was receiving. Being the tight Scotsman that I am, I ended up taking the Sim card out to avoid being stung by an enormous phone bill. New Zealand was a fabulous experience. The five of us travelled around the country in a mobile home doing as many crazy things as we could. Bungee-jumping, white-water rafting – you name it, we did it. I also got to see the other side of the Lions experience and it was every bit as special as I was led to believe. Unlike a World Cup where fans are scattered all over a country, it was 40,000 people partying in one city after another. Being 11,000 miles away with my phone off, I was slightly inured to the reaction of my announcement. When I got back I was blown away by the volume of people who had got in touch and how many of them wanted to help. Their generosity can be really hard to take, even if it is Mrs Smith down the road donating £5. The other day a lorry driver donated £1,000. Why? I really don’t know. We set up a trust to take care of my family – who are and always been my main priority – but I also want to make a difference to MND while I am here so last November we launched the My Name’5 Doddie Foundation. We still know so little about MND. Doctors in this country are still administering the same drug to patients that they were 22 years ago. It is horrific what people are going through and the drugs companies are doing nothing to help because it is not financially sustainable. Surely there must be something that can slow its onset. I know the chances that they will discover a miracle cure in my lifetime are slim. This disease is a death sentence. There is no way around that. As a farmer, I deal with death all the time and have been touched by it personally. The daughter of a close friend of mine died at 33, going in for a routine operation. We lost my brother in law at the age of 54. He was a big character, a local farmer – very good with sheep. Him Upstairs must have thought: ‘I need someone who is good with sheep. Michael Dunn, you are coming up to see me.’

Doddie Weir with horses

About 20 years ago I had a bad car crash. The doors were ripped off, the roof was turned upside down and impaled into the headrest but I just walked away with a bruised hip. Him Up There didn’t need a rugby boy at the time. Now He is saying: ‘I’ve got an issue with this MND rubbish, I need you to go sort it out for me.’ When it is your time, it is your time. I hope to use this column to let you know how I get on with this mission. Hopefully it will raise awareness and some funds to combat this wicked disease. I will also write about what is going on in my life, both the good and bad stuff, although I guarantee the good will outweigh the bad. If I could give you one message it would be don’t put off the things you really want to do today. Don’t wait to do these things in 10-20 years’ time because you may not get there. I’ve had an unbelievable life. It is not over yet but when it is I know that I will have no regrets.

  • Doddie Weir will be writing a fortnightly column for Telegraph Sport on rugby and living with motor neurone disease
  • For more information on the Doddie Weir Foundation or to donate go to myname5doddie.co.uk

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