Have you ever heard of Motor Neurone Disease before?

No, never.

So when he gave you your diagnosis.

I didn’t want to know nothing about it, because I, I had to deal with it in my way and that’s why I didn’t want to know nothing about it. I still don’t, to be honest, I think.

That’s how you cope with it?

That’s how I cope with it yeah. The little I know the better init? And then it can’t go wrong can it? What I don’t know it don’t hurt, init? That’s why I, I’d sooner block that out. I try to think I haven’t got it.

Okay, so do you think the way he told your diagnosis was the best way he could’ve told you, for you?

Oh well I know I had summat it was better finding out. The waiting, I had to wait about a month to find out what I had like, you know what I mean? So it was quite, that was quite hard work but once I knew, just take it on the chin init?

So it was quite hard work, tell me what that was like?

What?

Waiting for the diagnosis.

Well, I had to be patient I suppose didn’t I?

[Mmm] What were you thinking at the time?

What have I got? But no, I wasn’t thinking about it actually. I didn’t want to think about it. I didn’t want to know what I had. That’s the thing that, I tried to block it out. That’s all.

Okay, so you came home, were you with your mum at the time?

Yeah she come to London with me, yeah.

Okay.

But we went shopping afterwards, so that was alright. Take my mind off it.

So do you get, do you get benefits, do you get DLA?

Yeah I don’t get enough to live on, you know. My mum sorts me out a few more quid. There wasn’t nothing to do for me, you know, so I just get out.

Do you get Disability Living Allowance?

Yeah. But it ain’t enough, because I got all my bills to pay and all that out of that as well, like, you know. I’ve got a hundred quid like my cable and that, I gets a hundred, hundred quid a, I’ve got to pay a hundred quid a fortnight for bills and that you know? Because that puts a dent in it already like. I don’t get a lot. I should get more really, because they don’t know. A blind man yeah? Now I’m not, no disrespect to a blind man, yeah? But he could do stuff what I can’t do, if you know what I mean, like, you know? I’m glad I got my hearing and my sight but, you know, I’m limited to what I can do and I expect he is. But at least he can feed hisself and, like, move his arms, whereas me I can’t, you know what I mean? And they said, ‘No you don’t fit into a category. So fair enough and that’s why I look at like, you know, there’s stuff what he can do and there’s stuff, you know, what I can’t do.

What about eating out?

No. No, it’s hard work that is. I don’t eat out now because I, it’s hard work like, you know? See what I mean it’s easier with a, when I eat the sandwiches because I can hold that but like roast dinner or summat it’s really hard work like you know? Or beans, they go everywhere like, you know, it’s just hard work. Honestly that’s what, that’s the worst thing, is eating, trying get the, the spoon up, you know, to your mouth. That’s really bad yeah that bit, definitely.

Is there anything you can do to help it?

There ain’t nothing you can do. My mum helps me, you know, custard and, you know, that’s the worst bit. Trying to get, keep that on the spoon like, the cereal, stuff like that now, that’s really hard work that is, really hard work. And washing’s hard work you know?

The washing?

Well drying, sorry, drying.

Yeah, yeah.

Trying to get the towel on, it’s a joke.

Yeah.

Yeah things like that. It’s all hard work

It’s the day-day living.

Day-day things what you take for granted, it’s, so once you’ve got it that’s what I mean no-one else knows what you’re going through bar you, because they’re, you know, they, they don’t know. They don’t know what it’s like. Like you said eating that just sort of says it all, that’s the hardest thing.

Like you say day-day things like.

Day-day?

Yeah living, day-day living, it’s hard work And trying to get a coat on, that’s hard. Trying to get things out my pocket, especially now it’s cold, now it’s cold mind, I loves the summer because I can walk, wear shorts and t-shirt and it’s fine and my hands work alright but then bang when it gets cold, my hands stop working. They don’t, they won’t move they’ll just seize up like that, and they won’t, they won’t move.

So they’re worse in the cold weather?

Yeah, freezing. My hands go numb, even when now with the nights have gone cold like they yeah, they get real bad. That’s summat that when, no-one knows what you’re going through. Honestly when I’m, when I’m out, I want to get summat and my phone rings and my hands are cold, I, they won’t do it [laughs] and they, I miss a call.

So works changed, can you tell me how your life’s changed since?

That’s a, that’s a tricky one that one.

Well let’s take, going out with friends?

Well I can’t go to the bar anymore, I can’t hold drinks. I still go out, they help me out anyway.

What, so you still go out with them?

Yeah. Yeah, every Friday I go out with them.

Okay, what about anything else that you do? Walking the dog?

Fishing.

Fishing?

Fishing I go there every Saturday, just to get away from everything, I go every Saturday. I bought a rod and that last week, so I go there every Saturday.

Is that something new you’ve started?

Yeah well I used to but, I sold all my kit years ago like, and now with my hands like, and my mate has set up and all that for me and cast out. And I just sit and watch the rod like and when I get a bite I’ll, try and reel it in. It’s just casting I can’t do it because I’m worried I’m going to fall in the river because my balance is crap.

Right.

That’s all, so I don’t [laughs] I ain’t tempting fate.

So tell me what you like about fishing?

It’s just relaxing init? You’ve got no-one round you, you’ve got no traffic. Sit down in the chair, fish, fish, fishing [laughs], couple of beers. I’m alright then.

Well when I was, when I was working my dad said, ‘What’s wrong with your hands?’ because I was struggling to do up my shoelaces. So that was the first symptom of it, what was it, was it? Then I was getting the shakes like, like holding stuff with the drill and like and I was finding it harder to pick things up, like bricks and that, and that was, that was the first symptoms like. And then I was waiting a year then to get seen. So I went and seen my doctor and then the consultant like, took ages to try and get me a bed in hospital. So really it just took a year like from there on.

No you were just telling me that you used to do a job that used to take you round the country.

Yeah, and I liked that yeah.

So when did you stop working?

What from there? When I thought they weren’t paying me enough money. So then I left there and then done labouring. I found that even better, but I weren’t travelling the country, like, with that. So I had to leave that because I couldn’t physically do it. That’s when I knew, like, when this was kicking in, like, you know? I couldn’t physically do it.

How were they when you, how were your employers at the time when you were starting to find it difficult?

Well, one of them I felt like hitting him because he kept taking the mick, like, you know that, I just left in the end anyway. He weren’t, he weren’t all there anyway so.

Right, okay.

Sorry, I just don’t like chatting about it, that’s all.

Did anyone, did anyone talk to you about trying to continue working, helping you to find a way to continue working?

Not what, what I was doing, no, because I, if I can’t use my hands what am I meant – I can’t even write. What am I meant to do like if I can’t hold a pen? I ain’t going to be able to hold a screwdriver or a drill. So all them things like, you don’t, you takes it for granted but once it’s gone, it’s gone. Well, I did, anyway. I didn’t ever know I was going to get this.