"I'm doing alright at the moment," Lewis Moody says with a smile, reflecting on his life since being diagnosed with Motor Neuron Disease (MND) in October. His positive outlook on life with MND is truly inspirational, as he strives to make a difference for himself, his family, and others affected by the disease. Moody draws inspiration from rugby legends like Doddie Weir and Rob Burrow, who tirelessly worked to raise awareness and funds for MND research after their own diagnoses.
He has now joined forces with the 'My Name'5 Doddie Foundation' (MNDF) to carry on their legacy. Moody has called upon his former teammates from England's 2003 World Cup-winning squad, as well as friends from his rugby days, to join him on a 500-mile cycle ride from Newcastle to Twickenham. The ride, which starts on June 14, aims to deliver the match ball for the PREM Rugby Final at Twickenham on June 20.
For Moody, supporting MNDF feels like a natural fit. "We've spent a long time trying to understand and figure out what this whole space is, and the important thing for me is if we're going to connect with a charity or start our own, where we're going to be applying that main effort. It became very quickly apparent that the leading force in the MND space was My Name's Doddie Foundation," he explained. Moody feels a sense of hope, which he believes is a significant difference from when Doddie and Rob were diagnosed.
"In this space, when I speak to specialists, they talk about hope, and I don't know if that would have been the case when those guys were diagnosed. Of course, hope is one thing, and it's nice to have that, but action is really where I suppose I find my energy and find my focus, wanting to move hope into clear actions and then clear outcomes," he continued. With the links between impact sports, physical exertion, and MND still not fully understood, Moody is aware that living with MND means he has to temper his competitiveness and be mindful of his fatigue levels during the 500-mile cycle ride.
"The reason for it being so soon is to make sure that physically I feel like I can, I can contribute and get through it!" he added. Moody's goal is to bring his friends back together and enjoy the experience, without the pressure of racing.
"For me, it's just about bringing my mates back together. I so enjoyed the Slater ride, and that connective feeling of being back with a load of competitive idiots that love pushing themselves. The competitive juices suddenly went overdrive, and it was nice to be surrounded by those types of lunatics again, but we won't be racing anywhere.
It'll be just getting from A to B because they just about finished me off on that bike ride!" Moody has been cautious with his training, taking into account the advice of his specialists. "With MND, the specialists were cautious to sort of say yes, exercise yes, keep fit, but be careful, be wary of extreme exertion, you will fatigue quickly, you will be more tired, look after yourself, all that type of stuff. So, there are different boundaries in place for me now.
But 100 per cent, I love... there's nothing like having the opportunity to get together and feel a bit of discomfort together - but taking the race element out of it, which is really nice!" It has been over six months since Moody publicly revealed his MND diagnosis. The disease, as Moody explained, works in a unique way - every person with it is different.
"The only sort of significant noticeable change is still in my hand. The shoulder strength is diminished as it was, but not significantly reduced since diagnosis.
The hardest thing is noticing every day the little things, you know, so you might say the other day, I noticed a slight difference in my finger strength. Whether it's opening a bottle top, holding a fork, cutting your food… those little things mentally are a challenge when they present themselves, but I think within sort of within a day, you can move past it, just focus on functional things I can do rather than things that I'm less able to do.
But at the minute, touch wood, everything still remains slow, so hopefully, it'll continue." Moody wants to show that he can still do things like this and that having the right mindset and support can make a big difference. "I suppose from a personal point of view, there's something about wanting to show that I can still do things like this, and however progression occurs, while having to slightly temper my mindset a little bit from where it would have been in the past, it's not about winning the race to anything. It's about getting to the end, understanding what I'm capable of, and still being able to do it, I think is important for me, but also just wanting to show anyone that yes, when we're confronted with difficult news, and we all are, and people are on a daily basis, not just with MND, that if you've got support and if you've got the right mindset, we can still, you know, humans, humans are resilient buggers, and we can do, you know, whatever we choose to, if we put our mind to it." Moody's nickname 'Mad-dog' reflects his commitment and intensity during his playing career, and his all-in attitude to help raise awareness for MND through the 'My Name's Doddie Foundation' is no surprise.
"Being part of this campaign gives me purpose, being a part of this wonderful foundation and the people within it," he said. "It sort of brings a smile to my face.
Yes, no one wants to be diagnosed with MND. No one wants to be in this position, but it does give you a strangely privileged position.
I suppose I can call it that; it's weird, and it doesn't sound right, but it's how I feel about it. I suppose in a sense that I now have real clarity on what and how I'm going to live my life from these days forward." For more information about the work of MNDF, visit https://www.myname5doddie.co.uk/ ; donations to Moody's cycle challenge can be made at https://uk.emma-live.com/LewisMoodyCycle.