Rugby star and MND campaigner Doddie Weir receives a standing ovation at the Book Festival

Doddie spoke about what he finds different in the modern game from the rugby he played in the 90s. “An area of the game that I don’t like so much is social media… you see the youth of today, got to take pictures,” he said. “It ruins a lot of things, in the olden days we didn’t have that… we’ve got memories and times that we enjoyed. Enjoy it, it’s your time to enjoy it. There’s no need to share it with everybody on social media… I think that kills the game.”

Stewart and Doddie explained that the autobiography was first proposed 20 years ago, but that various factors compelled them to finally write it now.

“This motor neuron issue that I’ve got doesn’t really help.” Doddie said. “When I got diagnosed nearly three years ago, the average life expectancy was 1-3 years. So that kind of propels you a little to get your finger out and put pen to paper after 20 years talking about it. And what we were told in school, when you’ve got a book you have a start, middle and end. Well ‘til then I don’t think we really had a bit of an ending and hopefully there’s a few additions to go thereof.

“So you can see the continued theme in My Name’5 Doddie, it all begins with MND as well so it continues the theme where we are trying to tackle motor neuron disease.”

Doddie also spoke about the struggles he has faced in finding effective treatment, and the awareness campaigns he’s since embarked on.

 “So what happens as well, you may or may not know, it’s basically a muscle wasting disease, so if I’d done more weight training I might have another 30 years still to live. I should have stuck in more. But eventually your leg muscles disappear, your arm muscles disappear, I can’t touch my head now, but I can drink a pint, not with one hand but with two. You’ve got to adapt. Eventually you can’t speak, can’t swallow, it’s horrific in every sort of manner.

“There’s no prescription, there’s no advice, there’s nothing come from any professional at all which I thought was dreadful. Not even to be doing some exercise, eat some asparagus, or red wine and Guinness – that would be absolutely brilliant.”

The My Name’5 Doddie foundation has raised £3.5 million over the past two years for research and support for motor neuron disease sufferers.

Stewart explained: “so much of it is not just the generosity of the people out there but the fact that as a talisman, as a figurehead for the My Name’5 Doddie foundation, this guy asked some questions and demands more of doctors, professors, scholars than anybody in the UK has ever done before. We are where we are today, raising that amount of money and giving it away again to these guys to go and do it, simply because he has empowered them to go and do the research. You do not want to sit around a table when he’s at the other end of it when he says, ‘what have you been doing’? Very, very clever guys just turn to jelly basically. So he struck fear into one or two rugby players, trust me, professors don’t like him either.”