And we’d also been to see another counsellor, in fact we started to see this counsellor before Di even got ill. And so for a kind of couple’s counselling, because I think although the first physical symptoms emerged with Di’s hands, the disease affects your emotional state as well and you get very powerful emotions, become very emotionally vulnerable. And that had actually happened for a, over a year before that first physical symptoms had emerged. And although there’s no way of telling, I personally feel that that’s the first sign of the disease. And Di became emotionally very volatile in that time and distressed and that, this – so we were, it was like a rubber band. We would suddenly be very close and warm with another, and suddenly the slightest domestic disagreement would blow up into a huge row and she would threatened to leave me and all sorts of things. And I had no idea of what was going on. It was all very strange. And she was under a lot of pressure at work and at that time I just thought it was just you know just stress, strain because it was so unlike her. She was very solid in many ways usually. We’d just work things out. This was this was different.

And it’s amazing what can change you. It can be a simple remark, and you can be crying, and the tears will just stream down your face. You don’t know why in real terms. I mean you, it’s emotion, but it’s just been triggered by something, and it can be something really simple, you know. And with me it, it could be, somebody says, ‘Oh, I’m taking the lad to the match at the weekend’ you know. And suddenly you start crying because you – ‘I’m not going to be able to take somebody to the match at the weekend. [laughs] It’s actually bloody stupid. But it is, and especially where my grandsons are concerned it’s, I get very emotional that there are, our relationship can’t be what it is. I mean my brother came over, he lives up North, and he came down and one of my grandsons was here at the time he was here. And he picked him up and started swinging him. And I just burst into tears because I can never, I’ve never been able to do that to my grandson. And it, it’s so emotional that – just something like that, you know, and.

I don’t think it’s part of the condition that you become emotional. I think it’s a reaction to the condition. And, yes, I can be very laughable, and I’ll make jokes and – because that’s another defence against it. And you can get very surly as well. You know, ‘Don’t you realise that’s a disabled space?’ you know, ‘Parking your bloody car there. And it’s a reaction to it, you know. And you compensate for it, because you don’t want to happen what’s happening to you, and you compensate for it by either reacting emotionally, you know, because you can’t do things, you’re not going to be able to do things. I went out and bought everything I’d ever want to give my grandsons, and went and bought it in a day, you know. They got stuff that’s going to last until they’re bloody teenagers [coughs] that I would have bought, because that’s part of what granddads did for boys. And I’m not going to be there, you know.

Fishing rods, knives, all sorts of things, you know, cranky stuff. But it’s a reaction to it. And it’s worse at the beginning. When you’re first told, you, you think somebody’s just told you you’re going to die Saturday. You know, ‘It’s Friday night now, so Saturday you’re not going to be here. End of story, you know – don’t need to think any further than that. And of course it’s not. You are going to be around for a while, you know. Nobody can tell you how long, or they won’t tell you how long, I’m not sure which. Probably because they don’t. The disease affects people in different ways, it’s not all the same for everybody. And again, I think part of that is how your make-up is. If you’re a fighter you’re going to last longer than somebody that gives in to it or somebody that refuses to accept it. And I think that’s one of the big things. Accept it, embrace it. Once you’ve done that – and that’s hard, it really is hard. I found it very difficult. But once I’d embraced the fact that I’d got it, I could then start compensating for it, with equipment.

It’s just coming up a year since I was actually diagnosed, yeah. Well, I have good days, I have bad days. Some days when you’re out and about or you’re enjoying yourself, you’re doing certain things that you want to do, you can almost forget, you know. The sun’s shining on you, you’re, you’re having fun and there doesn’t seem a lot wrong with the world. Other days you’re perhaps set off by, I don’t know, a simple inability to achieve a mundane, ordinary task, you know, something trivial. And it just kicks you off and you’re’, you’re back there again, you know, and it’s, oh, frustrating. And then because you’re frustrated you do something else, say the wrong thing in front of the wrong person. Then you feel worse because you know you’ve, you’ve hurt somebody you didn’t want to hurt. It’s not their fault. ‘In better moments I guess I know it’s not my fault either. You can forgive yourself at certain times, other times you get more guilt and you just feel worse. But, yeah, there are times when you are able to – not necessarily forget, but it’s far enough into the back of your mind that it’s not as big an issue.

Other days you, you struggle more with your emotions, with your physical disabilities. You tend to be more, you tend to take longer to recover from exercise, from functioning. I’ve always thought myself quite a fit person [laughs]. I’m a pale shadow of the athlete I once was. And as you’re tired, that affects certain functions. So it may be that it’s still something you’re able to do ordinarily, just not now. And that can lead to certain – it can build the frustration, you know.

Phhhh. Well, there’s quite a lot of panic and anxiety. Which is usually around how you’re going to be able to cope when you’re more disabled. And as time goes on you still have that but you also are able to remember that you used to panic about when, what you would do when you couldn’t walk and now you can’t walk and you’re OK. So you sort of try and use that to help you deal with the panic you’ve got about what it’ll be like when I can’t hold my head up properly. You know, I know, I know it won’t be great but I know that there’ll be some sort of solution and I’ll, if I’ve still got my family around me and so on then I’ll still be OK. So there’s those sort of panic and anxiety feelings.

There’s a lot of sadness obviously. There’s a lot of loss because you haven’t really got a future anymore and you know, like me and my wife sometimes, we go and see other couples like, you know, go round to their house for tea and they come to our house and that, and they’ve got a future and we haven’t. You know, they can talk about what they’re going to do when the kids have left home and, you know, as a couple we haven’t got a future really. And that’s a big loss.

And then there’s, and then there’s the sort of the loss of, of just the things that I would like to do now but I can’t. You know, I’d like to be able to go out for a walk and I’d like to walk through the woods and I’d like to be able go down the shops without having to make a big performance out of getting somebody to help me all the time and so on and, you know, and, so there’s a lot of losses.

And also, when you’re in a wheelchair like this, you’re in a sort of you’re actually quite cut off from other people because you’re just surrounded by sort hardware. So it’s like quite difficult to have a proper cuddle with anybody. Or to sit on the sofa and have my dog sit on my lap, I can’t do that anymore. And things like that. So there’s a lot of things that you lose and, and they are just sources of, of, you know, deep regret, because you just will never get them back again. And you also know that even now what you’ve got now, you’ll be looking back on it six months later and thinking well it was quite good then. Because it’s worse now. It’s always getting worse and that’s quite tough. That is very tough.

There’s nothing, there’s nothing very much to look forward to in terms of the illness. You know, I mean something good might happen in your life, but in terms of the illness you’re always going to be getting worse. Whereas most people that’ve got an illness think about getting better, you know, this is a different kind of illness. And a lot of other people don’t know how to relate to it. You know, that, that speak to you because they don’t know what to say because all the normal things that they say to a person that is ill, as soon as they start to say it and they realise they don’t make sense. So then they’re just left dumbstruck then.

What other feelings are there? Well there’s a lot of anger. I have a lot of frustration. You know, on a day-day basis because I can’t do things. So I get frustrated and I get irritable. I’m usually quite a patient person but I find this, you know, this situation does like really try my patience. I get very irritable, I get very angry, you know, frustrated but well you can just you know bang things and shout and stuff, that’s all you can do.

What other feelings? Those are the main ones, I think. So you can feel lonely at times. You can feel lonely because you know, you can feel cut off from people. You can spend time with people, it’s often, often you feel, I feel the loneliest when I’m spending time with people. So sometimes, you know, people say, Well, I’ll come and spend time with you, thinking that that’ll take away loneliness but it can make you feel more lonely because, because sometimes people want to spend to time with you but they can’t get to where you are in terms of your feelings. So you’re, you’re left with it, so everyone else may be say’s having a good time and, and, and you’ve got these sort of anxiety feelings or anger feelings or sadness feelings and, and you know that the people that you’re with, they don’t really want to go there. So you have to keep it on your own and then you feel cut off from them and then you actually wish you were on your own to be honest, you know, and not having to pretend to smile and be having a good time and things.

So loneliness can be quite a big thing as well. Even though I’m not really lonely because I’ve got my family and everything, you can still feel lonely. And I know a lot of these things are similar for my wife as well. You know, because although she hasn’t got motor neurone disease the fact that we’re going through this and it’s like it’s us and like other people around don’t really get it and so we can feel quite cut off from other people.

Hmm.

Sometimes. That’s it mainly. Sadness, grief, I’ve mentioned that. Yeah.

I see the Medical Director at the hospice and he respects my wishes. He is honest with me and patient and as I experience new difficulties we discuss them and decide together how to proceed. He has pulled me through terrible depression by persuading me to take the antidepressant mirtazapine which has really helped me. Before I took it I had no appetite and couldn’t sleep which was making me very weak so I’m quite sure they have kept me alive and possibly made my condition stable. I think depression is a far more debilitating illness than MND but unfortunately the two often go hand in hand. I resisted antidepressants for years because I didn’t want to become dependent on what I then considered to be happy pills. I would never stop taking them now and believe neurologists should strongly recommend them to patients on diagnosis.

I definitely needed more emotional support from the medical profession early on but sadly, probably due to time restraints, none was forthcoming. I paid to see a private hypnotherapist and we worked on positive imagery; it just lulled me into a false sense of security and dented my bank balance. I was desperate for emotional support and felt rejected by everyone that I turned to. The counsellor at my surgery said she couldn’t make me feel better but I could cry on her shoulder. I decided to cry on my own shoulder. I come from a traditional Jewish background but received no support from the three rabbis I contacted. The therapist at my hospice was fairly elderly and kept nodding off during our sessions which I quickly gave up. My hospice doctor rescued me mentally by letting me discuss my feelings and giving me advice. I can email him whenever I have a problem or just if I feel anxious or low and he always writes back. Because I can’t speak well on the phone this communication is a life saver and I know most doctors wouldn’t do the same for me. I believe I’m extremely fortunate to have met him.

I think it was probably when I got past the two years and I suddenly realised that I had two children that I wasn’t going to leave. I remember watching their leaving assembly in primary school, thinking, ‘I’m not going to see them leave secondary school. And that, a lot of thoughts around were negative then, ‘I’m not going to do this and I’m not going to do that. And then somehow you kind of do a turnaround. And you, I started to think, ‘Well, hey, I’m still here now, so why shouldn’t I be here? My children are going to need me, so I’m not going anywhere till they’re 16. And then they got to 16 and it’s, ‘Right, I’m going to be here when they’re 18. And I change the goalposts every so often.

Have you suffered with depression?

In the early days, yes. Especially around the time of my marriage break-up. And it’s, I suppose everybody’s got, you come to that point where, ‘Is it really worth it?’ And I did have thoughts like that. But looking back, I think you’ve got to get to that position to claw your way out, if that makes sense. And I think that was a turning point for me.

Did you take any medication?

Yeah, I met the doctor, put me straight on. Because I was just, I couldn’t make any rational decisions. I thought that, ‘What was the point?’ And everybody was, I felt so alone and I had the children, and everything was just piling up and piling up. And once those tablets had kicked in, it took quite a few months, when I started to see things much more clearer and not so negative. And that enabled me to sort things out, make some decisions, and then, ‘Hey, I am not going there again. I’ve been in that black place. I don’t like it. I’m not going to be that person again.

I take a, I think it’s 10 milligrams now. At the time that I was at my worst, I was on something like 75, and I’ve gradually got down to 10 or 5. And I was going to come off them, but my GP thought it was better because I was stable and everything’s fine, to just stay on a small dose. And also there’s a lot of evidence that with motor neurone disease the chemical imbalance in the brain makes people often laugh inappropriately, or cry at the drop of a hat. That’s something that’s a real issue. So in some ways antidepressants kind of balance that out. So a small amount probably keeps that, that side. Because that can be really embarrassing as well.

Has that actually happened to you?

It, it has in, in the early days, where somebody would say something really upsetting and I would burst out laughing and think, you know, ‘I shouldn’t be laughing at this. And it wasn’t funny, but – and it’s off-putting to other people. Or somebody would walk past us and make a joke one day, and I would burst into tears and think, ‘This is pathetic. They haven’t upset you, so why are you crying?’ kind of thing. And, and that has helped with that side of it. So I tend just to take them.