Half of those affected die within two years of being diagnosed with the rapidly progressing illness that can leave people locked in a deteriorating body, unable to move, talk and eventually breathe.
This week, Len Johnrose – a former midfielder who made more than 400 Football League appearances for Blackburn Rovers, Hartlepool, Bury, Burnley and Swansea City – went public for the first time about living with the illness.
Little over a decade since his playing career came to an end, the 48-year-old father-of-three, now a school teacher, admits he has already researched assisted dying as he fears the debilitating impact the illness will have.
Here, he tells BBC Radio Lancashire about the harsh reality of living with motor neurone disease.
I’ve never thought ‘why me?’ I’ve never particularly even questioned why it’s happened. There are some days where I just think it’s an absolute bag of you know what, but I’m not angry about it. Who would I be angry at?
It is one of those things. I could get run over by a bus one day… life can be very, very cruel. That’s not just me, people’s lives are whisked away from them without warning. But I’m not angry.
The biggest thing is mentally it’s difficult. Some days are better than others, and I’ve had some really, really dark, down days. At the minute I’m just coming out of a really bad phase, post-holiday.
The last week has been absolutely horrendous, but I’m gradually getting out of it. You don’t want to speak to anybody, you don’t want to get out of bed, you have suicidal thoughts, it’s absolutely horrendous.
I was always one of those where if it’s light, I’m getting up. During the close season, if it was light I would go for a run, go to the gym. Now, I just don’t want to get out of bed. Once I’m out of bed and showered, then I’m generally feeling better as the day progresses. But at 8 or 9pm I’m tired.
‘Mentally I was OK, and then it hits you…’
I was diagnosed in March last year.
I initially went to the hospital about a fracture which hadn’t healed. I thought there was a nerve problem, so they did some electrical tests. Whilst there I just asked them to have a look at my other hand, because I had felt a little bit of weakness there months prior.
The consultant dashed out of the room and brought someone else in. That put me on the back foot a little bit, and I was told I had to come in for some more tests.
I had an uneasy feeling about it, but you look on Google and all the stuff you shouldn’t and after about a week I remember ringing up my wife and saying ‘I know what they’re looking for’.
I just laughed about it, I thought ‘it isn’t that. My legs are absolutely fine, it’s not that’. She’d been worried all week because that was the first thing she thought about.
When we went for the second investigation we just asked them outright and said ‘this is what we think it could be’.
‘Not telling people felt like a guilty secret’
It was some months before we told the children. Things were becoming more obvious. The first thing it affected was my hands, upper limbs. So we’d be going out for family meals with people not knowing, and I’m struggling to cut things.
The children knew there was a problem. We got away with it, if you like, because I’d had issues with my back – unrelated, which I eventually had surgery on last November – so me not walking properly they put down to that.
But it was obvious with my hands. I remember my son saying to me ‘dad, you only broke one hand, why are both hands an issue?’ So they were aware something was wrong, and because of the time element, you don’t know what you’re going to be like from one day to the next, or one month to the next.
So, it was ‘do we protect them? And how long do we protect them for?’ We told them about Easter time I think, which was horrific, it really was. My son has really struggled with it since. My daughter seems to be keeping everything bottled in, seems to be coping really well, but I’m quite worried about her.
That was a bad week, because we ended up telling a lot of family then as well. It was quite a stressful week.
With the children it felt like a guilty secret. I’ve not done anything wrong, I didn’t ask for it.
I speak to the neurological psychologist on a regular basis, you just need an outlet sometimes.
That outlet might not necessarily be the ones closest to you, because they’re living it in their own world anyway and the last thing they want to do is hear it over and over again when they’re trying to keep themselves and the family together.