Jim - Interview 18

Age at interview: 45

Age at diagnosis: 42

Brief Outline: Jim was diagnosed 2 years ago (2005) with Progressive Muscular Atrophy (PMA) form of MND. His legs and arms are affected but not speech.

Background: Jim is a former teacher, married with 1son, aged 15. Ethnic background/nationality' White British.

More about me...

Jim first noticed fasciculations (muscle twitching) in his legs about three years ago (2004). He looked on the internet and saw that it might be a symptom of motor neurone disease, but could also be caused by a lot of other conditions. The first time Jim went to the GP, the GP did not think it was serious, but Jim was worried and went back just before Christmas that year. This time the GP referred him to a neurologist and he had an appointment a few months later, in April 2005. Jim asked if it might be MND, and the neurologist told him it was possible. Tests confirmed the diagnosis within a couple of weeks, and they were given another appointment so they could come back and ask further questions. He does not remember clearly when he was told it was the Progressive Muscular Atrophy (PMA) form of MND, but his wife remembers that at this second appointment they were told it was 'not the most rapid kind'. 

Jim and his wife found the first few months were a time of grieving, feeling sad and frightened. Telling people was very emotional, especially his son. He feels lonely and angry sometimes. Gradually he found that planning what aids and equipment he needed around the house helped him regain some sense of control and a feeling he was fighting back - even though he also thinks it's important to accept you cannot really control the condition. Early on he made a decision to get a through-floor lift and a hoist put in place, but waited until he really needed it before putting the plan into action.

During the first year after diagnosis he was still able to walk quite normally, though it could be tiring and he would get a lot of cramps. Gradually walking became more difficult, and about a year ago he found he could no longer walk with a frame. He now uses a wheelchair. He found the NHS wheelchair service was not very flexible about what they offered, so he bought his own wheelchair. Although some individual professional staff have been wonderful, care does not seem to be well co-ordinated. 

Jim's hands are now getting weaker, and he is considering getting a computer with voice recognition technology. He had a van with hand controls to continue driving, but has now stopped. He has also just given up work. The college where he taught was supportive, but he was finding it harder as his arms got weaker, and very tiring. Jim takes riluzole, but he is unsure whether it has made any difference.

His advice to other people is to plan ahead for the condition, but also to plan enjoyable things and get the most out of each day. But each person's experience will be different.

At first his GP reassured him it was nothing to worry about, but referred him to a neurologist....

Well it was about three years ago, it was, in fact it was in November and I noticed I had these fasciculations in my leg, which is like twitching in the leg muscles. And that's the first thing that I thought was wrong. But I didn't think that I had motor neurone disease then. So I didn't do much about them for about a month because I was just kind of hoping that they would sort of go away and I did look on the Internet to find out about them and you know, that's when I first thought that I might have got motor neurone disease. But also on the Internet it said that a lot of people have the twitching and it doesn't mean they've got motor neurone disease.

So after they didn't go away I went to the GP and the GP examined me and then he said that it was nothing to worry about and but I was still worried about it, about it, so I went back again. This was kind of over Christmas and I said I was really worried and he said he would phone up a neurologist and ask him.

So then he got back to me and he said he'd spoke to the neurologist and the neurologist had said there was like a 99% chance that I didn't have motor neurone disease. So I was very relieved then. But he did say that he'd make an appointment for me to see the neurologist. And that took through to about April and then I saw the neurologist in April and he, obviously he thought then that I did have motor neurone disease, when, when the neurologist saw me. Because I asked him and in fact we, we went outside and my wife said, 'Why don't you go in and ask him?' Because she knew I was worried about it and she thought he'd say I haven't got it. So I went in and asked him and he said, 'Well, yeah. You might, you might well have.'

So, so then we well, it's not confirmed because it's a difficult disease to actually definitely diagnose. So nobody's ever just going to say you've definitely got it. So you then have to like get further tests and things. So then I had a test called an EMG, where they sort of put needles into your muscles and they try and see if your nerves are working OK. And then they sent the results of the EMG to a consultant. And then we went into the hospital sort of mid- to late April and that's when they told me that I've got motor neurone disease.

So I think compared to most, most people that's quite a quick diagnosis because I only, only went to the GP at Christmas and then my the middle of April I knew that I'd got motor neurone disease. Where for some people it's like three years or something before they actually find out.

He was told he might live 3 years. His wife was across the room from him and was crying with...

So when we went to the hospital and we saw the neurologist and he read the EMG results and he also looked, examined me again and we were in, we were in a private room. There was another doctor there as well. There was me and my wife was there and I was just sort of sat down in one of, it was like a really big sort of chair that they must use for patients, like a big chunky, like a dentist's chair thing, and so my wife wasn't sat next to me. She was on the other side of the room in another of these like big chairs. It did feel quite strange. And then he was just sort of saying you've got motor neurone disease. He was saying, you know, 'In a year you probably won't be able to walk, you know. The average life expectancy is three years'. He was like saying all these things and my wife's like sort of crying and I'm sort of like asking like sensible sort of questions [laughs].

And it just, yeah that part of it didn't feel great. It would've better if we'd been together more, if they'd allowed us to sit together. But it was like the geography of the room that we were sitting us in really didn't allow it. Because it was, it was a room that was ' I think it was like part of a ward but there were no other patients there at that point. So that was that was difficult and then we just had it ' then they just leave you for a bit and then you just have to go home. And that's kind of, they just well there's nothing else that they can do. But it's just really strange you just have to go home and sort of you know. What they did say was that we could come back next week so you know so they gave you a chance to ask any questions. But obviously we were kind of in shock. But they said you can come back next week and they made an appointment for us. So that we could go back and then we could talk about it more once we'd had more time to think about everything and ask and things like that. So yeah I think overall it was okay. It would just been if it had been in a different room and if we'd been able to sit next to each other. 

Was it useful being able to have that space to think and then go back?

Oh yes, it was yeah. Yeah I think if we'd just been left and then that was it, they'd said because the normal appointment when, when you're first been diagnosed is well you'll, you'll go to clinic, the MND clinic. And that's sort of, at first that's every six months. So I mean to have just been left like for several months without anybody else to talk to about it would've been cruel. So yeah it was good to go back, yeah. 

What happened at that next appointment? 

Well at the next appointment then I saw the consultant who was the sort of regional expert on motor neurone disease. Because the other neurologist I'd seen was just a more general neurologist I think. And he examined me and he said, 'Well yeah you've got motor neurone disease.' So he confirmed the diagnosis. And what he said although I didn't really take this in at the time, at the time but my wife tells me that he said, 'But the kind that you've got or from the initial symptoms that we can see, it's not the most rapid kind of motor neurone disease.' But I hadn't heard that if he'd said that but my wife did say he said that right from the beginning and then at future times when we'd see him he sort of said that. And and you know what he said was he doesn't really know although he was saying it wasn't the most rapid, he wasn't making any kind of, he didn't make any kind of predictions about you know how slow it would be, or what would go wrong first or what we'd need to sort out first.

It was upsetting having to explain the diagnosis to lots of different people and make them...

How did it go? Well, it's really difficult because people, people are just shocked really. That's the first thing. They don't really believe it to be honest. And they sort of, sometimes they sort of like say, 'Oh, well don't worry. It can't be right', and, 'It's not true', and, 'You know, you look all right to me', this kind of thing, because they don't really want to believe it. So there's that aspect of it.

And then of course they often don't know very much about it, so you've got to actually tell them all about it. And then they sort of and sometimes they don't hear that. Sometimes you find you're talking to them again later and they haven't took that bit in. It's like they haven't quite clicked that you've told them that you're going to be dead soon. You know, you've got a few years but you've not got a long time. Or that it won't be that long before you're not able to walk at all. They, they sort of, they hear it but they don't really change the way they're thinking about you.

So sometimes you've got to like tell them more than once, you know, so it becomes really clear to them. And then obviously as the illness has developed then that's got rid of that. But at first it took quite a lot of effort to actually to get people to see it really.

And that's, that's difficult for me then, it's upsetting. Because it's sometimes it's only when you have got through to somebody and they're, and they're feeling sad for you and then, then it really hits you how sad you feel for yourself as well. But normally I sort of keep that to one side. But it's when it's in somebody else then, then, which in a way is a good thing because it's a sharing thing. You know, you're sharing your feelings. But it is hard work. But it, you've just got to do it really. So, you've got to. Because you can't really move forward until, you know, if there are people that you haven't, that are important to you and you haven't told them, you know, you can't leave it like that, you've got to' And then if you did leave it like that I think they would feel very upset. And you're also cutting yourself off from support and so on. So it's something you need to do but it's not a very pleasant thing to do. Yeah.

He doesn't think riluzole makes much difference but continues to take it as he has no side...

And you decided to go on, to take Rilutek. Did you?

Yeah. Well, when we first went and he gave me the diagnosis, on that very first day, he said, 'You can get this today and start taking it straight away. So I sort of did. I've not had any side effects that I've noticed anyway. I'm, to, to be perfectly honest I don't think it does any good. That's my honest opinion but you know, you'd be a fool not to take it if it doesn't have any side effects and it might do some good. You know, because afterwards you'd only regret it afterwards. So, so I take it. It's no trouble to take it, so. I also took other things like because there's always rumours going around that such and such a thing might be helpful like co-enzyme Q10, or lots of vitamin E and stuff. And, you know, from time, and creatine was another one at the time. And none of these have been sort of proved although some of them they have done trials on them, and for some of them I think they are still doing trials on co-enzyme Q10.

So I did take those for a while thinking maybe they'll do some good and I should take them just in case. But later on I sort of stopped taking them because it, you can spend quite a lot of money on them and you've no real knowledge that they do any good either. So I think most people are like that, when they first get diagnosed, because as well as sort of organising all the aids and things they need they, they try and find out, you know, they imagine that there must be something that, you know, and, and that soon they're going to find a cure and there's something just round the corner or they could take this supplement and that'll work and, and I think later on you sort of realise there isn't [laughs] Because if there was, you know, obviously if there was then, then, I think as you get to accept the illness more, so you know that you really have got it. And you also accept that there isn't any known cure for it. So.

Planning equipment and adaptations in advance was a way of fighting back. With hindsight it might...

We were also like planning stuff out and we tried to sort of like get a balance of that really. Because on the one hand you want to shut it out but on the other hand you have to plan really. And the other thing that I found is that is that if you plan for it and try and get everything in place and try and get your through floor lift and your hoist and the things that you need is something, it do you know so it's a way of like, like fighting back a bit. It's a way of - you're not in control of it at all but it's a way of, it's a way of being a little bit in control. 

And and finding out about getting all of those things was that something that was instigated by you or did somebody advise you?

Yeah, well we asked the occupational therapist to come round from the social services. And then she brought around an architect that the council employ whose familiar with sort of converting houses for disabled people. And so they went through all the different options. And we did think about making it so that I would live downstairs and we also looked at the option of putting in a lift so that I could go upstairs. So we made that choice quite early on because it's, because it's good to sort of it's not good to do it all sort of piece meal because if you go down one route and then you find you've shut off the possibility of doing something else. It's sort of good to plan it all in advance. So we did all that yeah. So we instigated it but we had help you know. Obviously we got expert advice off people. 

And then once it was decided to have a through floor lift and an overhead hoist, then you get the people from the companies to come in and then they give more advice. And so gradually you sort of put it all together where everything's going to go and how it's going to be fitted and all that kind of thing. 

And so you had some of those things before you actually needed them?

No we didn't really. We tried to get in advance some of - we tended to get things more or less, we had the plan quite early on but we didn't actually implement the plan until we sort of needed to do the different bits. So we knew quite early on that we were going have a through floor lift. But because we didn't really want a through floor lift because it takes up space and it looks ugly, we didn't actually get the through floor lift until we really needed it. So there sometimes when I was actually struggling or we were struggling to manage because we could've done things a bit earlier. But we tended to kind of just just in time do things, that's still what we do now really. So we're never, we're never totally lost but we're always kind of just on the last minute [laughs]. But that's okay. That's better than being too late. And at least we always knew what we were going to do. I mean on reflection probably if I was like going to have to do it all over again, I would just do everything at the beginning because it's easier. You know the bathroom conversion, the access outside, the lifts, the hoist and that. I'd just get it all done at the beginning because once you've done it all once then you don't have to keep, you know bothering about it, where as by doing it bit by bit you're constantly...

It's time consuming?

It's like having another job to be honest.

He found wheelchair services unhelpful and inflexible, so he did some research and bought his own...

Yeah, well we first, we got in touch with wheelchair services, which is part of the NHS and we didn't get on very well with them. They wouldn't, they wouldn't meet the needs that I was saying. They would only do things according to the pattern that they had got worked out. So, for instance, when I was first in touch with them, well the first thing I got in touch with them about was just to get a, a wheelchair that could be pushed. So that if I was going out somewhere and there were long distances to walk, somebody could push me. And we did eventually manage to get one out, one out of them for that. We didn't actually use it that much but we did use it in some places.

And then the next thing that I wanted was, because I couldn't walk long distances, but I could still walk short distances, I wanted a wheelchair that would go outside the house. But I didn't particularly want to use a wheelchair inside the house at that point. But they said they wouldn't do it that way round. They would only provide me with a wheelchair that would go inside the house first and after I'd had that for a bit, and they wouldn't say what a bit was, after I'd had that for a bit then they would look into ordering me a wheelchair that would go outside the house. And then that would take blah-de-blah to come and so on. So, to actually get what I wanted I would have to go. And also I couldn't have the wheelchair for inside the house because before we, we would have to get some work done on the house and get extra doors knocked through and stuff. Because they were saying that in any wheelchair they would provide would have like a really big turning circle and it wouldn't be able to go through our doors.

So, basically, to end up getting a wheelchair, and we would have to do a load of work outside the house as well. So to end up getting the wheelchair that I wanted I would have had to, we'd have had to do loads of work, then we'd have had to get a wheelchair that I didn't particularly want and then, and then eventually they would have given me the wheelchair that I did want which is one that will go inside and outside.

And when we sort of said, 'Well this is not reasonable', they said, 'Well we don't even have to give you a wheelchair at all if we don't want, we can wait until you can't walk at all, because that's our criteria.' So they were like, they were just very unfriendly people really and very unhelpful. And we just sort of thought straight away they just don't want to give us anything, even though I've got an illness, where everyone knows I'm not going to be able to walk. They just want to spin it out as long as possible. So I decided to buy my own wheelchair and that was the best thing I did really, because everywhere I go people sort of say, 'That's a really good wheelchair' [laughs]. You know, other people I meet with motor, motor neurone disease. Because you actually need, not the chair that goes inside and outside, you also need a chair that, you know, moves properly. So that you can get comfortable, because I can't move out of this all day. I have to stay in this chair [demonstrating chair movement]. And I have very little strength in my body so I needed it to be able to move around, just to get, to able to reach things and stuff. So this, this chair's a better chair than you'd get off the NHS anyway and I would have had to wait for ages to get it on the NHS as well.

And where did you find out about that chair? Did you find it '

Yeah, well I went on like, Internet sites and I asked people with motor neurone disease what chair they'd got. And well all the Americans were saying is these Permobil chairs are the best. I think there are some other good chairs around as well but they were all saying for motor neurone disease you’re better off with a Permobil chair. So so then the wheelchair people came over and we also had a look at Invacare as because that’s an alternative company. And we thought this one was the best so we got this one.
 
And it’s been great?
 
Yeah, it’s good, yeah. Yeah. It’s just a bit, it’s a bit it’s not perfect [laughs] I could design it a bit better myself but it’s pretty good. It’s a bit flimsy on the top. The motor’s and everything, it’s very reliable but the sort of construction of the arms and things is a bit sort of amateurish which is a bit strange. It doesn’t quite fit with the rest of it. But, yeah, it’s a good chair.
 
OK. What about other things that the OT provided? What else have they talked about providing?
 
Well we’ve got hoists. We had to buy those, though. Everything’s means tested, means tested. So when I was diagnosed I was, obviously I was at work and my wife was in work, both full time work, so I, we had a small amount of savings which is actually, we’d saved up in order for my son to go to university. So when they means tested us they said they’re not going to give us anything for any of the stuff. So we’ve had to buy the wheelchair, the hoists, the lift, the outside access, the bathroom conversion. We’ve had to pay for all of that ourselves. And the only way we could have got round not paying for it would have been to both give up work, which is like, my wife’s career would end then as well, and sort of live off benefits and stuff. And then, you know, we’d be poor enough, but then of course we’d have, we’d be in their we’d have to wait for things. Because that’s, that’s the other side of means testing, is you either have to pay for it which is, the good thing is you can get it when you want it, or you wait for the social services to get it for you which means you have to wait according to their budget priorities. So it’s bad for everybody, the system that exists at the moment. So, so in terms of, they provided us with lots of advice and lots of help in choosing and the OT’s been great about that and they provide you with like small things like, you know, like a fork that’s a bit longer so to help you to eat when your hands are weaker. Anything that’s quite small. The most expensive thing they gave us was a shower chair, commode, and that was £600. But I mean, we’ve spent tens of thousands and they give us stuff that’s worth about a thousand [laughs] altogether.
 
But they have their, their advice has been very useful. So I wouldn’t say to anyone not to go to them because they give lots and lots of free advice and that’s really helpful.

He prefers to be told if his symptoms have progressed, even if it's upsetting. Staff have a...

Well as far as doctors and nurses go, we generally just see them when we go to the clinic and see the consultant and we see the MND nurse. Except when I have to go off for a particular tests about my blood circulation and things. What I would say is that they are, the feeling I had the last time that I went was, I mean obviously we're upset because it's like, the last time we went my arms had got a lot weaker. We'd hoped that that wouldn't happen. So we're basically reviewing it and saying last time we were here my arms were fine and now look at them. They're a lot worse. And, and that was obviously upsetting to realise that the disease had gone faster than we hoped because everyone is always hoping that it will go slower. And I just felt that the doctor and the nurse, they were obviously upset as well and they obviously feel impotent because you know they can't do anything really. Sometimes I sort of feel that they shield you a bit. They'll sort of say things like, 'Well maybe it won't go up to your neck and your neck won't get weak.' And things like that and I'm sort of thinking, 'Of course it will.' [laughs] You know sometimes it's as though, and I know sometimes I've got the feeling that maybe they, it's just as upsetting for them as well. What I would hope that what they would do is, because at the end of the day I believe it's better to know, even if it is upsetting. And I think sometimes they just say, well they don't really know what's going to happen, when in fact they do know and for me at least I'd prefer to know. But I guess it's difficult for them to judge it. Sorry, that wasn't very coherent really.

No, it was. That's okay.

Yeah, right. So I, I would prefer them to be, to be as honest, but I guess there are other patients where that isn't the case, you see. Where there might be other patients who desperately don't want to know. So they have to try and make a judgement.

The information sources he's used include the internet, books, the MND Association and BUILD....

Finding sources of information, where you find information, it sounds like you've used the Internet '

Yeah.

' quite a lot. Have you used any other sources?

Yeah, you can, there are some books about motor neurone disease how to cope with motor neurone disease or something. There's a couple of books. They're worth getting. I also went on the Internet and found out any books that had been written by people with motor neurone disease and some of those were helpful in terms of, because in the early stages I was really frightened that I wasn't going to be able to cope, and it was quite helpful to read books that were written by people that were further on than I was and they were coping.

And I also, I got in touch with the Motor Neurone Disease Association and you know, their, care organiser came out and spoke to us. And I also went to some of their meetings. And I also went to the home of a person, another person with motor neurone disease that lives quite nearby. And I went to her house a couple of times and spoke with her and her husband and my wife went as well and, and that was really helpful in terms of finding out, you know, what, what you need to do and that kind of thing.

But yeah, I do get a lot of information off the Internet as well. And because there's this, there's the BUILD website, so there are people there with motor neurone disease you can ask, you know, like really practical questions, like 'How can I carry on eating when my arms don't work?' or 'What's the best kind of wheelchair?' or, those kind of things. And they can, they can give you quite good advice there. A lot of the professional people that you meet, don't really know about motor neurone disease. They don't know that much. And a lot of them, I'm amazed at how many of them get it mixed up with multiple sclerosis and other illnesses. So they and that, and that just means that you can never totally rely on any of the advice that they give you because you know that they don't, they don't really know what they're talking about [laughs]. So sometimes it's better to actually to get it from another person who's got motor neurone disease.

He was frightened about seeing people whose symptoms had progressed more than his, but in fact it...

If I were starting out again those, I would go on the Internet but I would also make a, make big thing of trying to get more information from other people. And that, that again is a two edged sword because when I first went to the meeting I was quite frightened, because it was like I was all right then, I could walk. And I was thinking well I'll be going there, I'll be meeting all these people and they'll be worse off than I am, and I'll be looking at where I'm going to be in a couple of years. And, I don't know if I can face it and so on.

But you know, what I found is that it was helpful. Not just practically but it was helpful because you know they were all coping and so I could see that they were coping. And then that, that sort of made me feel better, then it seemed like well this is a problem that I can, I can sort of deal with this. And I'll know that, you know, I'll be all right if I can you know that, if they're able to cope then, you know, I should be able to cope as well.

He could continue teaching while only his legs were affected. His employers were very supportive...

Yeah, I kept working until about three weeks ago, actually. I just quit now. So, yeah, so I kept working, from diagnosis I kept working for a good 2 ' years. And that's you know, it's like I mentioned about the money, the longer you can keep working the better, because you need the money.

And how have your employers, how did they react?

Right, they, they've basically been helpful. They because I'm a teacher and they made some changes like I would always teach in the same room, which is quite unusual in, you know, it don't normally happen in the college where I work. So that made less moving around And then I also got onto, I mean they didn't do this, but I got onto this organisation called 'Access to Work' and they're a very good organisation. They're much better than the NHS or Social Services. They actually, if you need something they get it for you. And they got me like a little wheelchair, much smaller than this one and that was while I could still walk but I was just getting tired. And that's the first wheelchair I had, and I had that at work. And they also got me a tablet PC which was wirelessly connected to a projector so that I could continue to teach, because it's quite easy to work the tablet PC, you know, you don't have to stand up and use an overhead projector or whatever. So they got me those things, and they're quite expensive items. So altogether that might have been '10,000 worth of stuff. But because I had those things, that meant I could stay in work for longer.

And they also paid, when I couldn't drive to work anymore, they paid me to pay somebody else to drive me to work and back every day. So without that I couldn't have carried on either. So, so they were very helpful. But my employers have been helpful but they, they haven't had to do a huge number of things to be honest, because the place where I worked was already accessible because it was a college and they made some changes. And they've been supportive, you know, all my colleagues have been supportive and everything. And then at the end of the day I've finished work and I, if I'd wanted to keep, keep on trying to work then they would probably have tried to help me to keep on.

So, yeah, so I'm not unhappy with work, they've been fine. And Access to Work is a, is a good organisation. The only thing is they're a bit slow. So again [laughs] you know I got on, I got in touch with them straight away and that's really good because they just sort of take a while to get things done. But when they do get things done it's, it's really helpful.

OK. So they are a good scheme to use.

Yeah, definitely. If anybody's in work they should get onto them straight away. Yeah. Even, I mean, even if, if you know you've got motor neurone disease then you know you're going to need things so the sooner you get started the better it is.

Also tell me about the benefits perhaps of continuing to work, some people might.

I mean I was lucky in my job because it's teaching so it's basically talking and writing. And the nature of the motor neurone disease I've got was in my legs and then, and now it's come into my arms, so I have been able to continue with it for a long time. And there was quite a long time where of all the things that I used to do, teaching was the only thing that I could still do just as well as before. You know, nearly everything else, I'm like worse at, you know. I can't do the cooking and can't do the housework and can't drive my son anywhere and there's loads of things that I can't, couldn't do properly but I could still teach and I was still getting good results and it was still working aand the students weren’t complaining and everything was, so for my personal sort of, you know, it sort of buoyed me up, you know, to be able to keep working. So, so that was really useful to do.
 
And then in the end I, I’ve finished now because with my arms getting weaker it’s gone more the other way but I don’t think I can do the job quite as well as I used to. And then, because I feel I’m not doing the job well then that’s actually pulling me down a bit, emotionally. So that’s why I finished really. I mean I could try and struggle on but I’d be struggling on and doing the job not properly and that’d be making me feel bad. So I think for as long as you, you feel that, that the job’s helping you psychologically it’s definitely a good thing. And I’m really pleased that I did stay in work I mean, when I got diagnosed I thought I’d quit straight away [laughs] And then I thought, “No, I’ll, I’ll carry on for a few months and get these particular groups of students through their exams and then I’ll probably have to quit”. And then I carried on for another year after that. And then I carried on for another year after that. And all this time I was thinking, “I’ll quit soon”.
 
Or I’ll have to quit soon. You know, and in the end I have obviously had to finish at some point but by just sort of keeping on going I think it’s been helpful, yeah. Yeah.

He tries to find a balance between planning ahead but not thinking about it all the time. Each...

The only advice I would give is, that's practical is to, is to try and plan ahead. That's all, that's what I would say. I would, I would try to I would try to every day, what we used to say was every day we'll do something about the illness, something to get ready for the illness or to deal with the illness and we'll also try and do something that is in the here and now that we enjoy, you know, between us. Just myself and my wife. And then you're sort of balanced, you know, because if you spend all your time just like planning ahead for this grim illness that's going to kill you, then, you know, you'll go down into depression and obviously you'll, you'll waste you know what time you've got left. But on the other hand you've can't ignore it. So we've tried to like balance it. And I suppose that would be my advice, try, try in every day to do something, find out a bit of information, talk to somebody, make some extra little bit of a plan of how you're going to deal with the illness. But also every day just try and do something that, you know, nothing, nothing big, you know, not like, you know, go down Niagara Falls or stuff, because I'm not into that sort of thing. Some people would like try and see the world or whatever in your last time they've got left, and that's what everyone thinks you want to do. But actually all I wanted to do was spend more time with my family really and do like little things that are pleasant. And so it's just like every day try and do something like that and then also every day try and organise for the future. And that way you can keep your anxiety at bay and you can, and you can sort of get through OK. And make the best of the time as well. 

That's all I can say on that [laughs]. Because it's different for everyone. Because you might have PMA and it might be in your arms so all the things that have happened to me it's irrelevant to them. So, you know, they need to be looking at other things before I have.

He describes the range of emotions he feels, including anxiety, sadness, grief and loneliness.

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-to-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.

He is bitter that he had to pay for many things out of his own money. Social services should give...

The people who could do more is Social Services and, you know, the fact that we've, like, received no financial help. I mean, it absolutely staggered me, to be honest. I couldn't believe that that was what could happen. And you know we've had to pay 30, '35000 and that's before we started considering the loss of earnings that I'm going to suffer now that I've finished work. How, and that my wife might suffer if she has to finish work to look after me. There's a huge financial thing, you don't get any help with it. And it's like, well what have I been paying taxes for, then? So that, and, and it isn't just the money, although the money's obviously big, it's the fact that you feel abandoned, you know. You go to all these people and they say, 'Well we can't really help you'. You know, and it just, you, you sort of think you're living in a really wealthy society and everybody's getting on and doing things and so on, and you've got this illness which you never expected to happen and you don't know why it's happened and nobody can do anything about it and they don't give you any help. You know, they just let you sort of fall by the wayside and you can feel, you can feel quite bitter about that. And it can make you feel quite lonely. And I think it would add to the depression that people sometimes have with motor neurone disease. The fact that people aren't helping. So, I think Social Services could help more. Instead of just giving advice they could give more money and pay for more of the stuff that people need. But I don't think that's going to happen [laughs]. But that's what, that's what would really make a big difference. 

Hmm.

And, and for the people that, that, you know, do get the financial help, because they've kind of, on the means test they get, they get the help, then they need things faster. That's the other thing. It, for instance like wheelchair services, their, their sort of timescale of doing things just doesn't fit with a person with motor neurone disease. And they, they, they sort of go along the lines of, 'Well, let's see what you're like now,' and you say, 'Yeah, well I'm like this now, but I know that in the future I'm going to be worse.' And they don't seem to want to take that into account. And I think it would be pretty helpful if they did do that, so instead of waiting until you can't walk before they'll give you a wheelchair they should give you one straight away. Because you're going to need it anyway. It's not really costing them any more and it would make you feel so much better that somebody was stepping in and helping out. So, so I think those things would be good.

OK. That's something you've got to sort out yourself.

Yeah, and, and that when you try to sort it out yourself you sort of interact with these bureaucracies that have got their own rules and the rules aren't really made for motor neurone disease. You know, they're sort of, they're made, you sometimes feel like the rules are made for people with a disability that is static. So they can take quite a while to figure out what kind of wheelchair you want and to order it and to get it for you, and to assess this and to do that, and you haven't really got that sort of time.

They've had to coordinate everything themselves. It would have helped to have someone who knew...

No, we had to handle it. That's what we found out. We have to handle it. People, different people give different amounts of advice. Some people are very helpful like the OT from the council, and some people appear to be very unhelpful like wheelchair services. But there's no plan whatever happens. You know, you're in charge of it basically. You can get advice off different people. You can go on the Internet and find things out. You can get in touch with different agencies but the person that coordinates it all is yourself. And we did say actually at the beginning what would be really great would be is if there was somebody whose job it was who knew all about motor neurone disease and they would come in and they'd be like your champion and they would, you know, get to know you and they'd, they'd find out you know, what was what and then they would help you to come up with plans and then they'd do it for you. You know, in consultation. But there is nobody like that, you have to do it yourself. That's what it feels like.

Living with MND can bring out problems in a relationship, but he and his wife feel close enough...

I mean, my wife and I, we have thought, because the ill-, because the illness throws up a lot of problems in your relationship as well, which obviously we like, we overcome because we're, we're close and everything. But, but it does throw up a lot of problems. And we have thought of, of going to a counsellor together and sort of, you know, to help us deal with the sort of feeling, because my wife's got very strong feelings about it, I've got strong feelings. Sometimes we can help each other and sometimes we, we, we don't' help each other and we make each other worse. And that, if we went to a counsellor and talked about it with a counsellor maybe things, we would find ways of working with things so that it would be better for us. Just like any couple might go to a counsellor.

Hmm.

We haven't actually done it and I guess part of the reason is because, well in my mind I'm not even sure, would there be any counsellor that would know enough, that would, that would know what it was like or would we just have to spend all our time trying to explain to the counsellor what it was like [laughs]. So, so there's that feeling of like there isn't really anybody who really knows and therefore there isn't, there isn't really anybody who can really help you. So we haven't really used counselling. But we, I, I still wouldn't rule it out. We might do at some point, to help us. But it is a two edged sword, you could come out of a counselling session feeling pretty bad.