Doddie Weir: ‘I don’t really think about it too much, the future. The future I am looking for is a solution’

Doddie Weir, right, with former Ireland hooker Shane Byrne, at the launch of the Ireland v England Rugby Legends match. Picture: Ramsey Cardy/Sportsfile

The room shrinks when Doddie Weir walks in.

A former lock with Scotland and the British and Irish Lions, the 48-year old stands 6’ 6” although sheer size is just the start of it.

His blue, black and yellow tartan suit is so loud it merits an 11 on a Spinal Tap amplifier and then there is the booming Scottish brogue.

But it is his story that really captivates. Weir was in Dublin yesterday to help promote the annual Rugby Legends fixture which will be played at the RDS on February 1, the evening before Ireland and England’s Six Nations meeting in the Aviva Stadium.

Over €1m has been raised for charities by these games since the first in 2009 and the funds collected this time will be diverted towards the ‘My Name’5 Doddie Foundation’ which was set up in 2017 after Weir had been diagnosed with Motor Neuron Disease (MND).

The foundation has since contributed £1m to MND research projects and intends to pass on the same again in the next year so that Weir “and a lot of others can stick around and annoy you all with some more horrendous fashion”.

His positivity is humbling.

Q: What progress have you seen in terms of MND research since the foundation was set up?

A: “Where we are is we are able to see that MND is quite a complex issue. It’s not an easy fix but the annoying thing for myself, and why we went ahead, is that there is nothing new on the table in the last 25 years and that is outrageous.

“For the people with MND, it is a terminal issue and the average life expectancy once diagnosed is about three years. I am fortunate in a way that, two years in, I am still here. So what we have been able to do is fund gene therapy which has come a long way the last five years.

“That is in King’s College in London. And we have also helped Edinburgh University in the repurchasing of drugs. There is quite a strict (policy) around drugs so what they are trying to do is use, say, drugs that have been used in cancer.

Q: Do they have any effect on MND?

A: “So that has come on a little bit but, for myself, the frustration is that it is not coming on quick enough. That’s what we want to try and propel ... We have a group of professors that we meet on maybe a six-monthly basis and are building up a rapport with them.

“What we are going to try and fund are clinical trials. The research is there but we have got no money to bring the clinical trials out to the patient. So we need that to happen and the foundation is going to try and propel them into the market.

“It’s a bit like you’ve designed a car engine that can go 200 miles an hour but you can’t test it to see if it actually makes it or not. That’s how bad the situation is: there is no track or no race driver. MND is exactly the same in the drugs industry at the moment.”

Q: What is MND?

A: “It’s the most horrific issue and disease because it’s a muscle-wasting disease and once it gets to your legs you can’t walk. Once it gets to your arms you can’t clothe, you can’t lift, you can’t go to the toilet, you can’t eat.

“It also gets to your swallowing so you can’t swallow. You can’t eat, you can’t breathe, you can’t speak, so the whole of your body shuts down and eventually all you can do is communicate with your eyes. The life expectancy is not very good.

“Why am I quite positive? We get emails to the foundation. I got one a wee while ago saying this gentleman from Yorkshire — it was from his brother-in-law — it said ‘big man, keep up the good work because this fella was diagnosed in September 2017 and died in December 2017. He was 38 years of age and had two kids, two and five.

“I’m 10 years further on, the kids are ten years further on and what have you got to grumble about? That’s where my positive thinking comes in because talking to Joost van der Westhuizen’s team, who you may or may not know passed away from Motor Neurone Disease, he spent a lot money trying to find a cure for himself but it didn’t work.

“But his team said the best drug that he had was positive thinking.

“That’s where I’m coming from but it comes about from the support, from meeting you guys today, which is phenomenal. It’s helping me, it’s helping awareness, it’s helping with the most amazing game on the first of February as well and it’s all working as a team to try to find this ultimate cure.

“That’s what life’s about.”

Q: How did you find out that you had MND?

A: “What happened was I caught my hand in a door, but that was the start of the disease and my skin started twitching. Then I googled it and I thought, ‘Oh, we’re in a bit of trouble here’

“You’ve got to go through a lot of different areas to see: blood test, lumbar puncture, brain scans, shock therapy, just to see. I had to go through all of that just to be officially diagnosed. That was about two years ago and now here we are.”

Q: So, this isn’t a rugby-related issue?

A: “Yeah, why I don’t say it’s connected - and a lot people try and put connections between MND and rugby — is there’s a lot of people out there who have not played rugby. Rugby might have something to do with it but I don’t think there’s an immediate connection.”

Q: Are you prepared for what future holds?

A: “Well, I don’t really think about it too much, the future. The future that I am looking for is a solution and, with the support that we have got, we are challenging the professors, which I don’t really think they are used to because I have got nothing to lose.

“They said it is ‘going to take ten years to get a cure’ and I say, ‘why not five years? Why not four years, two years, one year because a lot of people don’t have that. ‘You can’t start drugs because it is not safe’ but why?”

Q: Is this about commercial viability?

A: “That could be one reason. MND is not big numbers compared to other diseases and I think the commerciality is something to do with it.

“Also the complexity of the issue. You can’t just take a part of your brain and take a look at it. With other parts, you have liver or heart issues, you are able to go in and take biopsies. With MND you can’t.

“We are trying to propel them to do things quicker. We are probably 40 years behind cancer at the moment, which is not good for myself and other patients. We just want to quicken it up a bit. Again, I take a positive note. I am still here, I got to celebrate another Christmas.

“The kids are possibly maybe not so happy because two years ago when I got diagnosed they maybe got everything they wanted from Santa.

“This year I’m still here, so don’t want to spend too much. Maybe Santa didn’t give the gifts he could have done.

“I’m enjoying every day for what it is and every party we’re invited to. That’s been a recipe I’ve gone with from day one, 20-30 years ago. Every opportunity we’ve had, enjoy the day for what it is, and worry about tomorrow when it comes. If it doesn’t come, you’ve had a good last night.”

- Tickets for the Ireland Legends v England Legends on February 1 at the RDS are available at https://www.ticketmaster.ie/irishlegends from €10.

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