“I’m feeling good so far,” Lewis Moody says with a smile.
Questions about how he’s doing now after revealing his diagnosis of MND (motor neuron disease) last October will never be an easy question to answer, but his relaxed and emotional response was heartwarming.
But his perspective on life with MND is inspirational. Moody not only has a goal to help himself and his family, but he also has a goal to help other MND patients and the countless others who are working hard to ultimately find a cure for MND.
To that end, Moody drew inspiration from other great rugby players who have sadly gone before him. Great Scottish lock forward Dodie Weir and Leeds and England legend Rob Burrow have become synonymous with raising awareness and funding for MND research following their diagnosis, so Moody has now teamed up with the My Name 5 Dodie Foundation (MNDF) to take up the baton from them.
Moody called on many of his “mates” from England’s 2003 World Cup winning team, Leicester, as well as former enemies and now friends from international rugby, to join him on the 500-mile cycle trip from Newcastle to Twickenham.
They will start their match at England’s northernmost club, Newcastle Red Bulls, on June 14th, before delivering the match ball for the PREM Rugby Final at Twickenham on June 20th. It feels natural for Mr. Moody to support the MNDF.
“We (the Moodys) have spent a lot of time trying to understand and understand what this whole space is about. The important thing for me is: do we partner with a charity or do we start our own organization that applies that main effort? And it quickly became clear that the leading force in the MND space was My Name’s Doddie Foundation,” he said.
And for many reasons, I feel some sort of natural connection to the big man himself, to Dodi, and to nothing but the incredible work he’s done.
“I think the space that I arrived in is very different from the space that Dodi and Rob arrived in, in terms of the sense of hope,” he continued.
“When you talk to experts in this field, they talk about hope, but we don’t know if that was the case when they were diagnosed.
“Of course, it’s one thing to have hope, and it’s great to have it, but I find energy in actually taking action and realizing that my focus wants to move, and I want clear action and clear results afterward.”
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England’s 2003 Rugby World Cup winner Lewis Moody has been diagnosed with motor neuron disease.
The link between impact sports, physical exercise and MND, if any at all, is still not fully understood, but one thing Moody does know is that living with MND means he has to develop his own competitive side and be conscious of his fatigue levels during 500-mile bike trips.
“The reason it’s so fast is so I can physically feel like I can do it, I can contribute, I can overcome it!” he added.
“For me, it’s just about bringing the guys together. I really enjoyed the Slater ride (‘4Ed’ campaign – former Leicester player Ed Slater was diagnosed with MND in 2022) and the feeling of connection to be back with a bunch of competitive players who love to push themselves.
“My competitive spirit suddenly went out of control and I was happy to be surrounded by such crazy people again, but we’re not going to race anywhere, we’re just going to get from point A to point B, because they just about finished me on the bike!”
“In the case of MND, the experts were cautious in saying yes (to riding Moody’s bike). Exercise, stay healthy, but be careful, be careful not to overexert yourself, you get tired quickly, you get more tired, all that kind of thing, be careful of yourself.”
“So I have different boundaries in place right now. But 100 percent, I love it… There’s nothing like the opportunity to get together and be a little uncomfortable together, but to take the racial element out of it is really great!”
Former England rugby player Lewis Moody presents the match ball during the Quilter Nations Series match at Twickenham in November
It’s been just over six months since Moody went public with his MND diagnosis, but he explains that the disease works in unique ways and affects each person differently.
“The only significant visible changes are still in my hands,” Moody explained. “My shoulder strength is back to normal, but it hasn’t decreased significantly since my diagnosis.
“The hardest thing is noticing the little things every day. The other day I noticed a slight difference in the strength of my fingers.
“Opening a bottle, holding a fork, cutting food… those little things are mentally difficult when they show up, but I think I can get over it within a day. I just focus on the functional things that I can do rather than the things that I can’t do much of. But the moment I touch wood, everything is still slow, so hopefully that will continue.”
“I think from a personal standpoint, I want to show that I can still do things like this and that whatever progress is made, while I need to soften my mindset a little bit from where I was in the past, it’s not about winning a race to something.
“I think it’s important for me to follow through and understand my capabilities and keep going, but at the same time I just want to show someone that when you’re faced with difficult news, we all are like that, and that’s how people are on a daily basis, not just in the Defense Forces. I want to show that with the support and the right mindset, we can still do it, that humans, humans are resilient troublemakers, and that we can do whatever we choose if we put our minds to it. ”
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Rob Burrows is honored by the crowd as the Super League All-Time XIII is announced at Headingley.
Moody was highly respected and admired by his teammates and opponents during his illustrious playing career. His nickname “Mad Dog” gives a clue to the dedication and intensity he brings to his game, so his all-in commitment to helping raise awareness for MND through the “My Name Dody Foundation” should come as no surprise to anyone.
“Participating in this campaign has given me purpose and allowed me to be a part of this amazing foundation and the people within it,” he continued.
“It kind of puts a smile on my face. Yeah, no one wants to be diagnosed with MND. No one wants to be in this position, but it gives you a weird privileged position.
“I guess you could call it that. It’s weird and I don’t think it’s right, but that’s how I feel. In a way, I think I’m now really clear about what and how I’m going to live my life from now on.”
For more information about MNDF’s work, please visit https://www.myname5doddie.co.uk/. Donations to Moody’s Cycle Challenge can be made at https://uk.emma-live.com/LewisMoodyCycle.
