Michael - Interview 29

Age at interview: 40

Age at diagnosis: 39

Brief Outline: Michael was diagnosed less than a year ago in 2006 after noticing weakness in his right arm. His arm weakness remains his main symptom, and it has got worse. Currently he is on sick leave from work.

Background: Michael is a business manager (motor sales), married with 2 children, aged 11 and 9. Ethnic background/nationality' White British.

More about me...

Michael noticed weakness in his right arm in late 2005. His doctor referred him to hospital. At first the consultant specialist thought it might be a virus, but referred him to a colleague for further tests. While he was still in hospital, the results came back and staff said they would rather tell him once his wife Sam had got there. Immediately Michael suspected it was bad news. To be told it was MND was 'crushing, devastating' and Michael felt there was no hope left.

Deciding what to say to their young children was one of the worst things. The children know the name of the condition, and that their father may need a wheelchair, but Michael and Sam decided they did not want to tell them everything. They want the children to have as happy a childhood as possible, and do not worry too far in advance about what will happen. They have read the MND Association booklet about telling children, but they would have liked more help in deciding how to talk to the children.

Michael was so shocked by the initial diagnosis that he became quite depressed and found it very hard to come to terms with what he calls 'the future you won't have'. He gets easily frustrated by not being able to do ordinary things like hold a pen or brush his teeth, though he tries to find practical ways round these problems. Not being able to hold a pint or wave a football scarf has also been difficult for him. So far his main symptom remains arm weakness. He prefers not to think very far ahead about what the future holds. His wife takes on more of the responsibility for finding information and planning ahead, which makes him feel both grateful and guilty. 

He has tried to avoid thinking about how much time he has left. When his GP started discussing this with him recently, it was another big emotional set-back, and Michael had to stop working because he was feeling too fragile emotionally. He now also needs more help using the bathroom, and it is hard to ask work colleagues to help. Michael works in motor sales and loves his job - driving and cars are still his passion - but he is beginning to feel he wants to spend more time enjoying life with his family while he still can. Although he gets very emotional very easily, he finds humour helps. His advice to others - if possible - is not to allow themselves to be as overwhelmed by the diagnosis as he was and to 'get on and do as much as you can earlier on'.

He knew it would be bad news when they asked his wife to be present. He felt his world had...

It was quite devastating, to be honest. I guess I knew before they told me, in so much as they came round to do their rounds in the morning - and they were lovely [laughs], don't get me wrong, they were very nice and I have no complaints about how or what they did. But knowing what they had to tell me, they said they had the results back and wondered what time my wife would be able to come down. I said, 'It's obviously bad, then, because you, you know, you feel I need someone to lean on to be able to give me that.' And unfortunately for them I'm a sales person, have been for many years, and consider myself quite good at what I do. And I'm pretty good at spotting a fib when I see one [laughs]. 'No, no, it's okay, we just, we really don't want to have to explain everything twice.' The bullshit alarms were going off and I just, I knew. Anyway I phoned Sam. Bless her, what she must have gone through I don't know. I was in a state of near hysteria. She drove up - dropped everything, drove up. Then they called us in and told us [sighs]. As he put it, it was the worst possible diagnosis as a neurosurgeon.

So then, hmm, the specialist and the nurses and - and as I say they were great - the news they delivered was, mm, crushing, devastating. I felt my whole world collapse'in an instant really, wasn't it? [turns towards wife] It just couldn't have been real, couldn't be real. To be told, 'There is no cure. There's nothing that we can do for you. There are, there are some relatively new tablets which we can prescribe for you. They won't cure it. They may slow down its progress.' The - how was it put? The jury was still out on it, really. They wouldn't know how long people who were already taking that drug would have taken to degenerate, had they not have been on it. That was [pause] very hard to come to terms with. 'There is nothing, there is no cure.' It almost feels like, initially the very first thing that's ripped away from you is hope. That's pretty hard. So for anybody with a condition like this, that is one of the hardest things to come to terms with.

There is no nice way to tell people they have MND - it will always be 'a hammer blow', however...

What would you say to health professionals about how they ought to approach people with information?

[laughs] Advice on how you deliver things like that? Wow. Where would you begin with that? I appreciate it's a very sensitive area and I felt they approached my situation with sensitivity. I don't know where I would begin to advise on that. It's just, it's a hammer blow. However much velvet you wrap it in, there's a hammer behind it. I'm certainly not saying just, 'Out with it and, you know, whatever with the consequences.' I don't think there's ever going to be a nice way to tell somebody they have a condition like this.

He wants his children (aged 11 and 9) to enjoy their childhood. They have not told them...

Michael' It was then very devastating to tell other people, family and friends. 'If it's hard - I don't know, if it was hard to tell my parents, 'the real, [wiping his eyes] the real tough one really was, 'What do we tell the children?' 'No matter what age they are, they're still your babies. 'That's been one of the hardest things to cope with. 'How much do you tell them? What do you not tell them? [tearful, wiping eyes] Rightly or wrongly, my choice was that I didn't want to be responsible for stealing their childhood. 'They have their doubts. They're not [sighs], not 100 per cent gullible [laughs]. But we still fire off stories that Santa Claus is real and the tooth fairy exists and, despite the best efforts of their classmates to say otherwise, you know, we just, we want them to retain their childhood. 'So I can't tell them the truth. [tearful]. Oh dear. My little boy, he's just like me, he's a lunatic. He's, [laughs] he's as mad as a, a brush, isn't he? [wiping eyes] And there are many times, you know, I could have almost blurted it out, 'I haven't got time to fight you.' 'I can't tell them. Where would you find the words?

Michael' It has affected the children in a number of ways. There could be better, more easily available support, I think, for the children. It's difficult for us because we don't particularly want to give them information they'll not be, may not be ready for. We've had the discussion and it's - well, we'll give them information as they ask. Some people say, you know, you should perhaps tell them. They may be angry at a later date if you haven't. I think I'd rather live with having allowed them their childhood for a bit longer. I already think kids grow up too fast these days as it is, you know. And I, I look at the childhood that I had and the childhood that they have and it's so different. It was all so much more innocent. And things have changed anyway. Do I want them to have to grow up much quicker? Which they'll have to with the bereavement. Well, they can do that when it happens. 'I don't particularly want them worrying every day at school, 'Will Daddy be alive when I get home?' [wiping eyes].

Has anybody offered you any advice on how to talk to the children?

Michael' [looks to wife, who whispers] Yeah, there is a booklet from MND, which we've looked at. We try to be as open - how does that sound? One minute I say we don't want to tell them anything, the next I'm saying we're trying to be as open as we can. I try not to be as contradictory as I am [laughs].

Sam' We don't lie to them.

Michael' We don't lie to them, no [phone ringing]. But we have been sensible about what we say.

He noticed his right arm was weaker than his left arm when lifting weights one day. Gradually he...

It started off really - I was in front of the telly pract-, you know, lifting some weights and I found that oddly for a right-handed person I could lift more weight with my left hand than I could with my right. My right arm was weaker than my left, which seemed strange. But I was still able to lift weights, just not as much or as often. And it seemed weird. It went from then, I went to see the doctor. They were unaware of, of what it was from the GP's. It didn't get any better. In fact it got slightly worse. It then reached a stage where I couldn't, couldn't lift my arm straight up in front of me, you know - put my arm out in front of me and then raise it from by my side, straight out forward, as a straight arm. I couldn't lift it above my head like that. It, it all seemed really quite strange. It was, it was more restrictive movement. I got referred by my GP to see a - now, I always get confused with this - a specialist in muscular and bony issues, whatever that is. Anyway, he couldn't find anything, carried out several tests, couldn't find anything wrong with me. Brought me back in for further tests and said as far as he was concerned he thought I'd, I'd got some kind of virus. That was the initial thought. I had a, a virus much like a flu that affects the nervous system, and it'll right itself in about six months. But before going too far down that route he'd just like me to see a, a neurosurgeon. No alarm bells rang at the time. It didn't seem - it was just odd. You know, there was no pain involved in it. Had I have suffered pain, I would probably have felt more worried and more concerned. But because there was no pain I, it just seemed odd. I couldn't get to see a neurosurgeon for months on end.

You need to know some things, but he feels too fragile to find out about progression and...

Some people plan for things, others live on a, a day-by-day basis. I try not to think more than a minute or two ahead [laughs]. No, I, I've not really felt strong enough to plan ahead like that for what might come. I know, I know other people around me take the effort to think ahead and, and concern themselves with those things. In a lot of ways I've been too fragile to, which has been another dilemma, really. It's been something else that I've found it hard. I've felt guilty because I've not felt strong enough to face those things, which then dumps that responsibility on other people. And for that it's, it's hard. But we all cope with things in, in different ways. I've never been much of an organiser [laughs]. So in that respect I've always been a 'wing it' type of person and it's worked for me. So now I suppose that's it. There is no fixed plan or structure. So I just adjust as each fresh problem reveals itself. You do. You find a way, find a way of coping and adjusting.

I guess that's linked to what we were talking about earlier before we started, about the information, and how much you wanted and when.

Definitely [sighs]. I wish I'd never heard of MND [laughs]. Having said that, the information that you want, in real terms you want as much as you can cope with. You need to know certain things. If you're broad-shouldered and you feel you can cope with, with more information and, and you can look at prognosis and find that comfortable, fair play. I' I wasn't comfortable with it. I'm still not comfortable with it. I'm very keen to prove them wrong [sighs]. It really is about knowing what you can cope with or, or sticking within those limits, I think. It's not been very easy to cope with. Having said that, unlike certain other conditions I've been given some time with which to organise a goodbye, organise a legacy, generate memories - whatever you want to, to see it as. You have some time to do certain things, which - I could have had cancer and been given six weeks. So.

What would you say to health professionals about how they ought to approach people with information?

[laughs] Advice on how you deliver things like that? Wow. [pause] Where would you begin with that? It - I appreciate it's a very sensitive area and, and I felt they approached my situation with sensitivity. I don't know where I would begin to, to advise on that. It's just, it's a hammer blow. However much velvet you wrap it in, there's a hammer behind it. I'm certainly not saying just, 'Out with it and, you know, whatever with the consequences.' I don't think there's ever going to be a nice way to tell somebody they have a condition like this.

He enjoys work but has stopped at the moment partly because he doesn't like asking colleagues for...

Certain physical difficulties make working from somewhere other than home quite difficult. Should I need to use the bathroom, I find it at times certainly impossible to do my own trousers up, and sometimes quite difficult to do my flies [laughs]. Them's the breaks. To ask your wife to assist you to get back dressed again, I can live with that. Certain colleagues at work, mm, maybe not. I work with some good people, but I think you can ask too much [laughs]. So that's had a bearing on it. 

I'm not working at the moment partly because of that, partly because I did get quite low. I had a conversation with my GP regarding, as it turned out I was talking about how I was feeling, and it progressed into a conversation about prognosis. How and where it got there, I don't know. It came as quite a shock to me. Whether or not he thought I was fishing, I don't know. But we kind of discussed it. And it was like, 'Oh, my God. Not ready for that.' Crush number two. 

Was that the first time you'd really thought about prognosis?

[sighs] I'd known the situation isn't great, but that was a fairly pointed conversation in that respect. I don't do pointed conversations. That really did set me thinking, really, 'Well, if I have only got a sort of fairly finite amount of time left, no matter how nice the people you work with are, do you want to spend that time with them, working, when we all strive for a, a home-work or a work-home balance?' I love my job, I loved my job. In some ways it loved me. I found something that I was able to do and enjoy doing, which many people don't. Having said that, when the chips are really down, do you want to spend your time doing that? And really you go to work to support your home life. And with respect to them, 'No, I don't.' As I feel at the moment I don't, don't know that I want to go back. Maybe when my doctor's note runs out I might have come to terms with things and may consider it slightly differently. I don't know. But at the moment, certainly, I don't feel the want to be spending such a large amount of my time away from the people who matter the most to me.

Would it financially be possible for you to stop and stay at home?

I think when the benefit system starts to kick in properly, then, yeah, just about. We'll have to make adjustments, we'll have to tighten belts and do less of certain things. But it's probably more important to me - it is more important to me, no probable about it - it is more important to me to be around those people and share as much quality time with them as I can. I have to make up for a lifetime without them.

He spent too long under a cloud when first diagnosed, and still feels bitter and frustrated at...

Advice I'd give to other people in the same situation? Do more early [laughs]. I was under a cloud for, oh, I don't know, a few months, to be honest, just a bit, oof, weighed down by it all. Smell the coffee faster. You know, there's still a life to be lived. Get on and do as much as you can earlier on. Make plans for next week, don't make plans for next summer. Get on and do things. That's my advice. Enjoy what you have. What you have will be limited, but enjoy it. And do as many of the things that you've always wanted to do as you can, without incurring bankruptcy or other problems that may come your way [laughs]. I love life. I don't feel any less alive now than I was. Yeah, I'm embittered, I'm a bit frustrated at times. Other times I'm the life and soul of the party again. So just live to the full, enjoy what you can. If you feel like crying, have a cry. If you want to smile, smile. Do all you can when you can. Be happy.

A year after diagnosis, some days he feels fine, but other days something frustrating can happen...

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.

Limited arm movement is his main practical problem. He has worked out ways to compensate, for...

My arms have been the big issue. So instead of my arm generating the movement, my shoulder takes the lead role in, in doing anything, because I can still move my shoulders. But then trying to do an exercise whereby you actually try to stimulate your correct or your normal muscle functions to, to carry out that particular exercise. And you're having to sort of make a, a mental effort not to allow the compensation to take place because you've got used to doing things in a certain way. If I want to lift my hands up to a certain height, I know I swing my arm. I use my shoulder to, to swing my arm to get my arm up there. If I want to pick something up, it requires both hands. I can't do it alone. And generally speaking, if it's of any sort of weight or consequence - a pint, if I want to drink a pint, I need both hands on it and I need to lock my elbows in position and sort of stand, sit there [demonstrating] with my elbows on the table and, and drink the pint that way. Because heaven knows I wouldn't want to spill it. So it's, it - you know, it's difficult. You have to learn to compensate and you just do things in a different way.

Have you ever tried any armrests or anything like that?

No, no. It's, 'it's just finding a way in which you can cope. We have a particularly heavy duvet [laughs] and I can't pull the damn thing up over myself. But I have an accommodating wife who tucks me in at night, which is good. It's little things like that. You know, you - at the moment I compensate. I kind of grab hold of the end of the duvet and then if we're busy and I've got into bed first I try and cover myself up. I lift the duvet with my knees. You know, get my knees in the air and try and pull it up towards me as best I can. And you just do. You, you have to try and compensate in one way or another.

He and his wife have become closer, but sometimes they get frustrated. He admires how strong his...

Oddly in some ways I suppose we're a lot closer. We're aware of time issues, and we tend to work at things. We're sometimes more and less tolerant of each other because of frustrations. It does have a big effect. You can't deny that. I've found an inner weakness [laughs] and Sam's found inner strength. I look at times and think, 'Where did you find the strength to cope with that? How have you coped with this?' And wow, you know, I've certainly been more impressed than I ever was before. And I mean that in the nicest of ways. I've always been quite - I'll show strength even if I don't feel it. Worries, issues in the past, I've tried to deal with them on my own rather than share them, because I've always felt that was my role as the man of the house. Looking back now, if I'd have known really how strong she was [laughs], she could have carried half of that years ago. I wouldn't have needed to have felt that way. It does put a lot of strain on, because other people have to cope with things that I don't feel I'm able to.

They are still able to have a normal sex life. Bearing weight on his arms is difficult, but they...

We've not needed to resort to Viagra yet. But I'm sure if we need to we'll find a supplier. But no, you know, it's - again, we talked about coping, didn't we, about adjusting and finding ways of compensating. My problem's my arms. So supporting my own weight can be an issue. But you do find ways of, of coping with all things, don't you? No different to how you hold a knife and fork or, you know, getting yourself in and out of a car. There's lots of different things in life that can be difficult, frustrating. As I say the, the harder ones to cope with are probably the things that you do take for granted, the everyday little things that shouldn't be a problem. And then I find myself spitting teeth that they are a problem. But, no, we're still able to have a healthy sex life. That's okay. 

OK.

It's not one of those things you need to worry about just yet.

Driving is his passion, but he will probably need to change to an automatic soon. He misses...

Are you still driving?

I am at the moment, yes. I won't be for long. It's my one vice that I have left [laughs]. I think I'm probably weeks away from needing an auto permanent-, you know, full time. On good days I can cope with the manual. On other days I don't drive the manual, I drive the auto.

Is driving something that's been quite important to you?

It's a passion. Driving isn't A to B, it never has been for me. I'm one of the, the rare people in the motor industry - I still love cars. I've been in it for years and yet I'm not cynical about them. I don't just view them as a means of, of making a profit or as a profit-making opportunity. I still love the things. I think that I'll always be passionate about cars. Some people out there will understand that. Other people will be mystified for it and be thinking, 'Why?' You either do or you don't. I think they're Marmite, aren't they? You love them or you hate them. I will drive as long as I can or certainly whilst I feel I can safely do so. I still do the odd track day, and I've noticed that I can't push the car as much as I used to, and it takes me longer to do and adjust to certain things. So I drive within my capabilities now, rather than to the extremities of what I felt I was capable of.

Are there other things, like particular passions or interests, that are being affected, or that aren't affected?

Oh, I love my football. It's, holding my scarf above my head and, and applauding have become quite difficult [laughs]. Perhaps I should change teams to a really unsuccessful one. I wouldn't need to applaud very often [laughs]. I haven't lost my sense of humour.

Coming to terms with the loss of a future is one of the hardest things, especially not seeing his...

You're invincible, aren't you? You'll go on for ever. And that really is one of the hardest parts of it. Little things you know you'll never do or you'll never see. It's not about regrets. It's really about coming to terms with the future you won't have. And that's hard. We have a great present, in spite of the things that aren't right with me. But it's knowing that ultimately there isn't much of a future. We won't claim our pension together. I won't be there to celebrate my son's first job or give my daughter away.