Doddie Weir says he is extremely grateful for the support that his foundation has received from the rugby public in trying to find a cure for Motor Neuron Disease (MND).
The former Scotland rugby international, who was diagnosed with MND in December 2016, spoke to OTB AM about dealing with the disease and why he decided to set up the My Name’5 Doddie Foundation, which raised over £1 million in its first year.
"I think it's outrageous in today’s environment, that there's not even one new drug in twenty five years that’s hit the table to give people with MND a chance," he told Eoin Sheahan.
Despite MND currently having no cure, Weir has retained his positive attitude since becoming ill and is grateful that he has been able to stay “pretty active” two years after being diagnosed.
"You know when you have a massive session and you’ve got the most horrendous hangover and you see someone with a bigger hangover, you feel OK. Well that, in a simplistic sort of way, is my mindset."
'The fight and the journey is part of making people aware of the condition [...] we take everything on board and enjoy every day we have ' 💭@DoddieWeir5 speaks to @EoinSheahan about his diagnosis of MND (@mndassoc ) 🎥https://t.co/PEztrJ790H
— Off The Ball (@offtheball) January 10, 2019
Former Springbok captain Joost van der Westhuizen was also diagnosed with MND and passed away in February 2017. His example of leading a full life during his final years inspired Weir.
"If you don’t use it you lose it," Van der Westhuizen told Weir, so keeping the muscles in his limbs working has been a major focus for the big Scot in the last two years.
Life expectancy after being diagnosed with MND ranges between one and three years, with some exceptions. It causes muscles to weaken and shrink and those affected will find it increasingly difficult to move their limbs.
"The worst thing about it is that the professor said, ‘there’s a nurse, she’ll look after you because there’s pretty much nothing we can do, and in a year’s time you’ll probably come into this clinic in a wheelchair.’ So that makes life pretty nerve-wracking.”
It's outrageous that there's not even one new drug in twenty five years that’s hit the table to give people with MND a chance...
Weir spoke about the difficulty he had in finding the right time to tell friends and family about his diagnosis, as his family already had to deal with his mother’s fight with cancer.
"It was quite an emotional time, when you tell your mates that you’ve got this horrendous disease and its terminal, so eventually I’m going to die."
Weir hasn’t let the disease get in the way of his life, spending plenty of time partying and enjoying time with his family and friends. He has had to make some small changes to his life however, not least his pint-drinking habits.
"Drinking a pint, I can’t really do it with one hand, so I do it with two hands now. So you’ve got to adapt."
The Ireland Legends vs England Legends rugby match will go ahead on the 1st of February in the RDS and is in aid of the My Name’5 Doddie Foundation. The annual fixture will feature ex-Scottish players for the first time.
You can find out more about the event and pick up tickets by clicking here.
Words: Eoin Harte