England's Lewis Moody during a 2010 test against the All Blacks. Photo / Photosport
Rugby World Cup winner Lewis Moody says he has been emboldened in his fight with motor neurone disease (MND) by a specialist saying there is “hope” – despite no current cure for the rare condition.
The ex-England flanker said he believed progress had been made since Scottish great Doddie Weir and rugby league legend Rob Burrow were diagnosed.
Both Weir and Burrow have since died of the incurable condition that attacks the brain and spinal cord’s motor neurons, causing muscles to waste away and stop working.
“I think things are vastly different to the time of Rob Burrow and Doddie Weir in the sense of hope,” Moody said in a call with journalists.
“Specialists talk about hope.
“I want to transform hope into clear actions and then into outcomes going forward.
“That’s what people living with it want to see.”
Moody was capped 71 times and captained England on 12 occasions.
As a test player, Moody famously won the lineout which led to Jonny Wilkinson’s drop goal that beat Australia in the dying seconds of extra time in the 2003 World Cup final.
He also won two European Cups with Leicester.
Moody said he was devastated when the original specialist gave him the news last year without offering a glimmer of hope.
“I was like, what? Where’s the information? Where’s anything else other than negativity?” the 47-year-old said.
However, his spirits were later raised after seeing a second specialist, Professor Martin Turner, an Oxford-based consultant neurologist specialising in MND research.
“The diagnosis didn’t change,” Moody, who is undergoing a trial with Turner, said.
“But he was much more informative. He was really clear on everyone is unique and everyone’s journey is different.
“He used the word hope, which I found doctors and specialists very rarely ever use a term like that.”
Backing up his words, Moody today announced plans to undertake a 500-mile (804km), seven-day cycling challenge to raise funds and awareness for the fight against MND.
The “Lewis XV” ride – which includes former teammates such as Wilkinson, Phil Vickery and Martin Corry as well as his sons Dylan and Ethan – begins in Newcastle on June 14 and arrives at Twickenham with the match ball for the Prem final on June 20.
It will raise funds for My Name’5 Doddie Foundation (MNDF), established by Weir.
MNDF has committed more than £23.5 million ($53.74m) to MND research programmes and provided more than £2m in direct support to people living with the disease.
According to Nicola Boseman, chief executive of MNDF, six people a day in Britain are diagnosed with MND.
“In many ways I have been brought off the bench to take this baton forward and get this job done,” Moody said.
“It is an easy thing to say but very difficult thing to achieve in my lifetime.”
Moody said the response to his call for others to come on board for the challenge had been overwhelming even from those who hated riding bikes.
“I chatted to Vicks [Phil Vickery] the other day, he was like, ‘mate, I absolutely’, he used some expletives, ‘hate cycling. But I’m 100% going to do this with you’,” Moody said.
“Maybe it is that sense of connection again and coming together and camaraderie and all that sort of stuff.”
Moody admits physically he feels things changing gradually, such as his shoulder strength “is diminished”.
“The hardest thing is noticing every day the little things.
“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 and those little things mentally are a challenge.
“But I think within a day, you can move past it. Just focus on things I can do rather than things that I’m less able to do.”
Moody said though the start date for the bike ride is fast approaching there is logic behind it.
“I’m hoping that there will be many more challenges that I’m able to take part in,” he said.
“The reason for its proximity is because of my desire to want to be a part of it as well.
“Rather than just have other people do it in my name.”