Well, I don’t know how strong I’m going to be. I do get tired more easily now. And I have to think, if I’m going to go out in the morning I don’t want to do anything in the afternoon. And if I’m doing something in the afternoon I take it easy in the morning. My breathing’s getting a little bit more restricted now. And I think, I can’t type any more very well, so I’m going to have to use voice-recognition software. And again, if your voice is going and your breath is going there’s a limit to how well you can use that. So I’ve just got to see how much I can cope with, really, I think, and pace myself. Because I’ve found all along, if you try and do too much then you can tire yourself out very quickly. And I would say to anybody whos got it, ‘Take your time. Always take your time and don’t rush. And don’t let anybody else rush you. And give yourself a little rest between doing bits of things. And a little rest will let you recharge your batteries and then you can carry on a bit longer. But I hope to continue writing and using the Internet and things like that, just to keep myself looking outwards rather than looking inwards.

I would say the main message is given by the MND Association, ‘Make every day count. It isn’t a rehearsal. And I suppose the other thing is fight it, don’t give in to it.

Mmm. Do you, you clearly feel quite strongly that you fight – it’s a, it’s quite a…

Yeah.

…determined thing for you.

Yeah.

Yeah. Are there, are there times when you feel you can’t fight it?

Yeah. MND is a weird disease. Most of the time you can fight it. There are times when I would describe it as hitting a brick wall, and you have to rest, sit down. At those times, listen to your body, because it is a brick wall, and unless you’re aware of it you can’t get through it. It maybe lasts throughout a day, but listen to your body. But generally fight it.

Mmm. When you were told it was PLS, did that kind of give you extra fight, or how did it feel being told?

Certainly there was a – I won’t say relief – but it did give me extra strength to fight it, to live life as best as you can, as normally as you can. And I think normal is the word you’ve got to use in every day situations. Be as normal as possible.

Because they say that with cancer it’s a positive outlook, don’t they? And, and I’m sure it must, it must affect you. Because sometimes I think, ‘Oh, I’m really tired today. Is my disease progressing?’ And then another day I can go to the gym and do two hours with no problem. So I realise that it’s just how my body feels at the time and whether I’m a bit overworked and overtired. So I just really ignore it. And even if I do get up in the morning and I really struggle to get down the stairs to get out to the car to go to the gym, I just have to ignore it. I just have to bite the bullet and go. Because some days you lie in bed and you think, ‘Oh, wouldn’t it be lovely just to lay here?’ And then you think, ‘Well, you can’t do that every day. And, and people who are fully fit and have to go to work, they can’t do it every day, and I’m sure they’d love to lay in bed and do nothing. But you have to get up and, and live your life. And once you’re up and you’re out and you’re doing things, there are other things you can do. I, I think what I find most frustrating is I can’t do the things I used to be able to do, like the running and cycling and stuff. And I haven’t found a substitute, really.

And perhaps it’s worth noting, I can’t speak for other people with the disease, I can only speak for myself, apart from the odd, very rare muscle spasm and cramp, I get no pain whatsoever caused from, as a direct result of having motor neurone disease. Don’t believe all you read in the press or what you hear on the television and radio is all hype, and it’s put out by people who know nothing at all about motor neurone disease. I may be proved wrong in the future. At the moment, after I’ve been living with it for nearly nine years, or it living with me for nearly nine years. I can honestly say I do not get any pain, physical pain from the motor neurone.

So with the OT, the specialist nurse, all this equipment we were getting, the hot summer, if you realise that, you know, you can’t move anything when you’ve got MND so you’re in bed for, probably ten hours maybe, probably ten to twelve hours because Luise used to get tired, she used to go to bed about half past eight at night. And then of course, she’d be up quite early because she wouldn’t get a lot of sleep really and I used to have to get up in the middle of the night, in the latter months this is, and raise her legs up to her buttocks so she, she could be more comfortable. And then it was, so it was like a tent affect and then it would all of a sudden collapse and I’d have to get up and do it again. And, and of course the heatwave of 2006 was a nightmare for her because we, we really couldn’t get the right mattress.

So once again the NHS, their loan equipment department came up with various mattresses, some that you, pumps up with the aid of a, you know, it was, a motor. And you could have different sections of it pumped up and others not, you know, to, to make you more comfortable but none of these seemed to work. But in the end she stuck to the original one that she had, which was quite nice but we thought, the others might make her more comfortable but they didn’t really. And all sorts of different cushions for sitting on, because you know your muscles are wasting away, you’re all skin and bone really and, and things get very, very uncomfortable. But no she, she coped amazingly really. Never moaned, never complained, always joking.

Are you still driving?

Not any longer. I gave up driving when I was in Toulouse. And, and simply by the fact that I couldn’t any more control my feet and they, they were completely – there was a foot drop. So it’s impossible at that time to drive a car. And because I, I know that with the fatigue it could be dangerous, I gave up this, the driving and so returned my licence [laughs].

Was that hard? For some people giving up driving is very hard.

I think when I was, when I reached this point it was already in my mind. I said – because I’m very thoughtful of others – I say, ‘A car is a vehicle which is a, which is a weapon. Even at 30 miles or 30 kilometres per hour it can kill someone. So what would be my situation if I killed a child because just I was not fast enough to, to brake or to change, or to turn, because my arm went astray etc?’ So knowing this, and because I was knowing better about the condition, I know the trap, the tiredness which just knocks you before you realise it. So I decided at that time that it was off. And when they request me to return my licence, I said, ‘No problem. Have it. So I was not at all affected by it.