Lenny Johnrose feels it is his duty to spread the word to footballers about the “frightening” statistics suggesting a link between professional contact sport and motor neurone disease, but says nothing would have deterred him from pursuing a career in the game.
The 49-year-old former midfielder was diagnosed with MND in March 2017 after a hand injury failed to heal properly.
The diagnosis hit the ex-Blackburn, Bury, Burnley and Swansea man hard, plunging him into depression and initially prompting him to look into assisted dying.
“I had thoughts about not wanting to be a burden, and of not wanting to have this long or short, painful death,” Johnrose told Press Association Sport.
“So there were some really, really dark days where you absolutely think the worst.”
MND affects how a sufferer walks, talks, eats and breathes. It is a life-shortening condition for which there is no cure.
There is a one in 300 risk of developing MND in a lifetime, but recent studies have pointed to an increase in that risk for those involved at the top level of sports such as football, rugby and gridiron.
A review of 16 separate studies conducted by eight medical establishments worldwide concluded earlier this year that those who sustained repeated blows to the head and spine in top-level sport were more than eight times more likely than an ‘average’ person to develop the disease.
Former Scotland rugby star Doddie Weir is a sufferer and now spends his time raising funds and awareness for the condition, while it claimed the lives of South African Rugby World Cup winner Joost Van Der Westhuizen and ex-Celtic winger Jimmy Johnstone.
Johnrose, who became a primary school teacher after retiring from football, now wants to educate current professionals about the condition, and the ongoing research.
“It’s quite frightening to learn (what the new study shows) and I’m going into clubs and I have to be quite sensitive to that, because I don’t want people to think ‘oh my goodness, I’m going to get motor neurone disease because I play football’. Because I wouldn’t have done anything differently,” he said.
“But I just think it’s an important message for them to know.
“A lot of studies and research still need to be done, I get that. But the fact that there are suggested commonalities between football and motor neurone disease, it seems completely wrong of me to not to try to spread that word.
“If it turns out that there is a link, in terms of implications that would be absolutely huge within the game of football. So I think it’s a message worth certainly passing on.”
Johnrose is prioritising time with his wife Nadine and his children Chanel, Elizabeth and Patrick, but has also launched Project 92. He intends to visit every professional club to raise funds and awareness of the disease he lives with.
He visited his old club Blackburn earlier this year, and Rovers captain Charlie Mulgrew told the team’s official website: “When Len said that studies have shown that it can happen in sportsmen it really makes you appreciate how lucky you are and how things can just come on unexpectedly.
“You need to be thankful for your health – it’s the best thing you can have in life.”
Johnrose says the turning point for him came when he began to talk openly about the condition.
“It just took me a while to get there mentally, but after going public in August, it was as though the shackles had gone,” he said.
“The Motor Neurone Disease Association got in touch with me and were grateful that I had come out, because they said they’d needed somebody really to raise the profile within the public of motor neurone disease.”
Johnrose was overwhelmed by the kind words he received via social media, and he praised the practical support he has received from the Professional Footballers’ Association and the local council.
“The PFA have been really good. They have helped with getting some adaptations done in the house, making it more accessible,” he revealed.
“The local council and the NHS – as much abuse as they get – they’ve been unbelievably helpful.”
So how does he feel about the future now?
“I’m OK with it,” Johnrose said.
“I’m over the initial shock and occasionally I get thoughts of what life is going to be like for the people you leave behind but I can’t think like that.
“I’m going to continue to raise awareness, I’ll go away on holiday and have breaks when I can, I’ll do things with the family that I can and when I can, and I’ll just continue to enjoy my life whether I’m here for the next two minutes or the next 20 years.”
:: To contribute to Lenny Johnrose’s fund-raising effort, visit: www.justgiving.com/crowdfunding/project92