Len Johnrose on his battle with MND and the 'overwhelming' public reaction

When he went public with his battle against motor neurone disease last month he did so because he had hit another period where life was tough. Fed up of ‘keeping this guilty secret’, Johnrose spoke openly for the first time about the rapidly progressing illness that he has been living with since being diagnosed in March 2017.

Since then the 48-year-old has been inundated with messages, of support from fans of his former clubs, including Blackburn Rovers and Burnley, and of thanks from other people battling the terrible disease, which kills half the people it affects within two years.

The motivation for going public was personal for Johnrose, and it has drastically improved his mood, but a by-product of that decision is the realisation of just how popular the former midfielder is at the clubs he has represented.

“It’s been incredible, I didn’t expect anything like that,” Johnrose said.

“I’m on Twitter, I don’t do Facebook. I just started getting messages, hundreds of people sending good luck messages and saying how brave I was, which I don’t particularly agree with, for doing the interview and how candid it was.

“My mate said last week ‘I can’t believe how many people’s favourite player you were’. I can’t myself. You don’t understand the impact you have on other people.

“I played football because I liked playing it, so to see the reaction from people and to find out what you meant to them was a little bit of overwhelming. I didn’t want to be a cult hero, I wasn’t bothered about being famous.

“It’s been staggering, it’s really taken me by surprise.”

Ever since being diagnosed, Johnrose had wanted to go public at some point. Eventually it can become an illness that is impossible to hide.

Around 18 months in, Johnrose is displaying all the steel and the fight he used to display on the pitch for Blackburn, Preston, Hartlepool, Bury, Burnley and Swansea.

But all of us suffer a period of readjustment when returning from holiday, when reality bites after a week living in a sun-drenched fantasy where all our problems drift away. For Johnrose that period is even more difficult, as his neuropsychologist had explained to him.

“This year I pre-booked the appointment with the psychologist, but two or three days before we got back I could feel my mood changing.

“I knew I wanted to go public at some stage, but I was feeling rubbish and I just felt enough was enough. I felt like I was keeping this guilty secret, I needed to speak to people and to get it out there.

“I wanted people to be aware but for me it was the next stage of coping with things. Since I’ve gone public my mood has been much better.

“I’m not doing cartwheels and stuff like that, but I feel better that people know, that it’s not a secret anymore.”

Since going public, friends of Johnrose, former teammates and people he has never met have rallied around to start fundraising events.

That fear of how to look after and provide for his family, wife Nadine and their three children, Chanel, 24, Elizabeth, 15 and 12-year-old Patrick, has eased as a result, and now Johnrose can put his energy into raising awareness about MND.

“It’s been strange, it’s the worst situation in the world but something positive is being done. I hope there is that legacy that stuff can continue to be done about it and raise more awareness,” he said.

“You do get odd looks from people when you’re trying to stagger in and out of wherever you’re trying to go.

“I think people are generally nice, but if something is a little bit different people stare, they can’t help it.”

It might be a rare condition, but MND is a frightening illness. ‘There is no way out’, as Johnrose puts it, and the impact it can have on its victims is severe.

“People don’t know how debilitating it is, even professionals don’t know enough about, which is why there’s no cure,” he said.

“They don’t know what causes it, what rate it will progress out. There’s a tablet which is the only thing available out there, but they don’t know how it will improve your life, how it will work, but take it anyway, it should protect the nerve, but we don’t know what impact it will have.

“So you’re taking something that could rot your insides and damage your kidneys, but it might be for nothing. But mentally you feel you have to take it because you don’t how quickly it will accelerate. You take it but you don’t know if it’s doing you any good, which is madness.

“It’s not a competition, it’s not my disease is better than your disease, we’re all aware of the different cancers, but you can’t turn daytime TV on without seeing a cancer advert. I walk into the GP and you see cancer stuff everywhere, but there’s no mention, anywhere, of MND.”

While Johnrose says he is in some pain with the condition, particularly in his wrists and legs, it is the mental battle that is the toughest.

Yet his outlook is remarkably positive. While it would be easy to disappear into a well of self-pity, Johnrose says: “I’ve never done that, I’ve never questioned ‘why me?’

“I don’t feel sorry for myself, I’ve never been angry about it, I just want to know the best way to cope with it. Nobody knows why it happens.

“I just think life is cruel sometimes so you have to make the best of it. Too many people complain about things they can change. Do something about it.”

The future for Johnrose is uncertain. He recently met another MND sufferer at St Catherine’s Hospice, who had been diagnosed after him but was now in the full grip of the condition’s terrible impact, in a wheelchair, unable to talk, unable to eat properly.

The dad-of-three admitted that it was a ‘flash forward’ to his own future, a time that he admits scares him.

“As awful as it is, on one side of the coin I want for it to be rapid,” he says.

“That time for when I can’t do anything to when I die still scares me.

“One of my fears was hanging around for too long being a burden and I don’t want to do that.”

On how the diagnoses has changed him, Johnrose said: “It’s made me more aware of my limitations and my little insecurities.

“It’s made me less confident, but I don’t think it’s particularly changed my outlook on life too much. I don’t think it’s made me a better person, I don’t think it’s made me appreciate what I’ve got more than I used to anyway.

“It’s made me really focus on what is important around me. My wife used to get so frustrated at how blaise I was about things, and it’s worse now.”

One small effect it’s had is stopping Johnrose from being able to commentate for BBC Radio Lancashire at Turf Moor.

“One of the worst things is I can’t do the commentary at Burnley, because the commentary position is in the gods and there’s no support for walking up, I will fall down. I loved doing the commentary at Turf Moor,” he said.

“It’s just the way it is. I went to Man City and they’ve got lifts, Liverpool was the same, it’s easy, but at Burnley they’re just not ready for that.”

But Johnrose is still making the most of the time he’s been given. Former teammates Dean West, Steve Davis and Rob Matthews visited recently, but a side-effect of the battle against MND is the impact it’s had on Johnrose’s ability to match his former dressing room colleagues drink-for-drink.

“We all went out with my brother and a mate as well,” Johnrose jokes.

“It was half 12, I had to be up early, and I’m saying ‘I’m sorry lads, I’ve got to go’. Otherwise I wouldn’t have been able to get up in the morning as I’m absolutely shattered now.

“Back in the day, I’d have been getting in at 3am and still be ok, but I just can’t do it anymore.”