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Pauline - Interview 30

Age at interview: 54
Age at diagnosis: 52
Brief Outline: Pauline was diagnosed with PMA (progressive muscular atrophy) about 2 years ago (2005), after several years of leg weakness. She cannot walk far and uses a wheelchair, but is still able to work full-time.
Background: Pauline is a freelance market research consultant in the pharmaceutical industry, married with 2 children, aged 24 and 22. Ethnic background/nationality: White British.

More about me...

Pauline was a keen runner and athlete. She first noticed weakness in her left leg while running about 6 years ago (2001). Over the next 15 months the weakness got steadily worse, but she managed with it and just put it down to her body getting older. Eventually she saw her doctor who referred her to a neurologist. At first she thought she might have MS, then an MRI scan showed a cyst on her spine. She had a major operation on her spine, which took sometime to recover from, but meanwhile her leg was still getting weaker and she started using a stick. In 2005, she happened to bump into her neurologist who was surprised to see the operation had not improved her condition, and asked her to see him again. This time after further tests he diagnosed motor neurone disease. She and her husband were devastated but she immediately knew she wanted to carry on with life as normally as possible. Her consultant recommended she should not seek a second opinion but she disagreed, and was referred to a specialist London centre. Here her diagnosis was revised to PMA (Progressive Muscular Atrophy). She and her husband went out to celebrate that she had a slower progressing form of the condition.

She regrets not having had an earlier diagnosis. She feels if doctors have even a suspicion that it might be MND they should say so and explain that diagnosis can take a long time. Now she attends a specialist clinic she feels well informed and supported, but she is concerned that many health professionals, including some neurologists, do not know enough about the condition.

Pauline's legs have slowly got weaker and she now uses a wheelchair outside the home. She still works full-time, and is still able to drive to meetings. She is about to have the car adapted to hand controls, with financial help from Access to Work. She goes to the gym regularly to maintain upper body strength, but she misses the running and cycling she used to enjoy, and has not yet found anything to replace it. Her philosophy is to be positive - even 'belligerent' - to keep active, and try not to think about it much, but she knows she is fortunate to have slow progression. She does not like attending support groups. Although it can be useful to exchange practical tips with other people with MND, she finds the meetings are often more focused on carers than people with the condition. She would like to see more practical advice on things like good sources of second-hand equipment, or where to buy good shoes that don't slip off. She has Raynaud's syndrome, so her feet get very cold and stiffness in her toes makes some shoes uncomfortable.

Pauline has not made an Advance Decision to Refuse Treatment (ADRT) previously known as 'Living will' , but if her quality of life became very poor she would prefer to end her life. Her family find this difficult to talk about, but they know her wishes. She does not want her children to feel responsible for her care. Her husband finds it difficult to adjust to the idea that he will be looking after her rather than the other way round. Pauline herself is frustrated that she can no longer run the household as she used to. She knows she gets impatient, but draws on her sense of humour and determination to keep going.

 
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They went out to celebrate when she heard she had PMA.

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So I had to go through the whole of the summer knowing I had motor neurone disease and not knowing how bad it was. And we got this appointment to the specialist hospital, and I was in there for an hour and a half. I mean it's a fantastic unit. I'm so pleased that I've been referred there. And I was examined by a registrar for an hour, and then the professor came in. And he said to me, 'Well, I think you've got a condition that we would call flail leg or PMA.' And I said, 'Oh, what's that?' And he explained. And that night we went out and celebrated, which again is a most ridiculous thing to do [laughs]. 'Hey, I have got motor neurone disease. But it's PMA.'

 

She had lengthy investigations and an operation for a spinal cyst which made no difference....

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And then that week I went to see the GP, who said, tested me and said, 'Well, you've got a bit of a weakness in your left leg', which I think was an understatement [laughs], and referred me to a neurologist. Well, I went to see the neurologist, who just kept looking at me. And at the time I thought, 'Why does he keep looking at me?' He sort of sat and looked at my back and looked at - and I thought, 'What is he doing?' Well, obviously once you get a diagnosis of MND you realise he was looking for fasciculations. Why he didn't tell me that I don't know, and I, I, you know, it was a very scary situation. So he did all the sort of MS tests, asked me about my bladder, my bowel, my breathing, my swallowing, my - so obviously MND tests as well, and thoroughly examined me, asked me to walk across the room, then asked me to stand on my heels. Well, I couldn't. And I thought, 'Oh, that's a bit weird.' I'd never tried it. I did know that I couldn't jump, because again retrospectively, I look back at things that I couldn't do, and now I realise why I couldn't do them. But at the time I just thought I was getting old, even though I was only 49. And he said, 'Stand here,' and I said, 'Oh, I can't.' And so he said, 'Okay. Sit down.' And he was terribly austere [moves out of camera shot briefly] and he said, 'Well,' he said, 'I, you have a thing called bilateral foot drop.' And I said, 'Well, what on earth is that?' And having been in the pharmaceutical industry my whole life, I just had no idea what he was talking about. So you can, you know, know a lot of information but not know everything. And he said, 'Well, basically you lift your foot up and, and it doesn't lift up properly, and your foot drops and that's why you trip over.' So I was absolutely terrified. I thought I had MS. And I came straight home, I was on the Internet looking up all the symptoms of MS. And then he sent me for a scan, an MRI, and the MRI showed up this cyst on my spinal cord. And he said, 'Oh, look, this is what we've found. This is a cyst on your spinal cord, and we think this is causing the damage.' So obviously I'm immediately, 'Oh, can you do anything about it?' 'Well, yes, hopefully. We can't guarantee you'll get back to what you were before, but we can at least stop any sort of progression of the problem.' So he referred me to a neurosurgeon, and the neurosurgeon said, 'Yes, I can operate. We can either remove the cyst or reduce the size of it.' So in the December I had a massive open spinal cord operation, which was the worst experience of my entire life. I lost a stone in weight in a week, and it was absolutely horrific. And I eventually got over that and started rehabilitating. But of course over the next twelve months my condition worsened.

Did it make it any better, having the operation?

No, no. Obviously I had to get over the operation, so, you know, that I classed as my rehabilitation. And at the end of the rehabilitation I was no better, and I was just gradually getting worse. And funnily enough I bumped into my neurology consultant when I was interviewing another consultant at a hospital, and I had a stick at that point, and he said, 'Oh, I'm quite surprised to see you in that condition.' And I said, 'Yeah,' I said, 'this has just gradually been getting worse.' And he said, 'Well, come and see me again.' So I went to see him again. He referred me back to the neurosurgeon, who did another MRI and started talking about my spinal cord being thin in places. Which again absolutely terrified me, and I was in tears. And this went on for another, oh, eight months. And then I had several EMGs. And then eventually I had an EMG in the June, and the consultant there wasn't terribly talkative. And I went back to see the neurologist in the July, the day before we got the Olympic Games for 2012, I remember it distinctly. And he sat me down and said, “Do you remember when I first saw you, we talked about premature ageing of the motor neurones?” And of course immediately the jigsaw fell into place and I said, “Are you going to tell me I’ve got motor neurone disease?” And he just started rambling on, and I said, “Are you going to tell me I’ve got motor neurone disease?” And he said, “Yes.” And his immediate next statement was, “But I don’t want you to go shopping around for second opinions.” Quite. So I [laughs], I said, “Well, actually I do want to go shopping around for a second opinion, at least one, thank you.” So he gave me the names of a couple of people.
 

She would prefer doctors to explain that MND is one of the things they are looking for and that the diagnostic process can be long and uncertain.

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The only thing really is, is the business of what happens in the interim between somebody knowing you've got a neurological problem to getting the actual definitive diagnosis. I, I think, I think the way it was handled with me was poor. And I think neurologists have to understand that if you even suspect motor neurone disease - I know it's like saying to somebody, 'Oh, you've got something or other, it could be cancer, but it might not be.' I know you can't really say that, and you can't say, 'Oh, it could be motor neurone disease, but it might not be.' But the doctor saying to me, 'Oh, premature ageing of the motor neurones.' Well, what a stupid thing to say. You know, because it's pretty obvious that an intelligent person like me is going to think, 'Well, I might have motor neurone disease.' You've got to talk to people about it and say that, you know, 'These things take a long time to diagnose. It could well be a possibility.' You have to sort of be prepared mentally for that possible diagnosis. Knowing that it takes so long to diagnose and knowing that the sort of things that led up to it are the, the sort of symptoms that could mean it, I think you have to let people know. And the fact that I didn't know for so long I, I feel is really quite unfair. And the fact that they left me alone. No follow-up. You know, I was, I was given the operation, I had a follow-up MRI, and then it was, 'Goodbye.' Not, 'Come back in six months to see how you're getting on' or anything. It was, 'Goodbye.' And it was this chance meeting in a hospital that made me actually go back to him. Otherwise I just don't know where I'd be now, I really don't.
 
 

She goes to the gym as much as she wants. Keeping fit and active helps her fight the condition...

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Exercise is clearly something that's been very important in your life anyway.

It has. And in fact I was on the website the other day, and it was sort of pros and cons of exercising. Well, I'm not interested in that. It's like, it's like reading the newspaper every day and them saying, 'Red wine's good for you' and the next day they say, 'It's bad for you.' Or, you know, 'You shouldn't eat this and you shouldn't eat that.' If you did everything that anyone told you, you'd never do anything. You know, you'd be terrified to go out the door, you'd be terrified to eat anything, you'd waste away. So people telling me what I can and can't do is just, just pointless. My neurophysio said, 'You mustn't go to the gym more than three, more than twice a week.' Well, how does she know I shouldn't go to the gym more than twice a week? She's not me. She doesn't know how I feel. And in fact I was going to the gym three times a week. And when I was away I went four times. So since I've been back I've been going four times [laughs]. And of course you get tired. But you get tired when you're 55 anyway. So, you know, you, you have, it's all relative, you have to put everything into perspective. And if, if I can manage to do all these things and, and not make myself ill, then that's what I'll manage. Some days I feel quite rough and so I won't do anything, and I'll just sit around and feel sorry for myself - no, actually I don't do that [laughs] - just sort of sit in my office or something. But I, I never have a day where I don't do anything. In fact to be truthful, the most depressing period was before I knew what was the matter with me. Because all the time you're not, you have no idea what's the matter with you, but you've got this condition that's getting worse and worse, it is extremely depressing. I have a friend at the gym whose husband has a similar sort of condition to me. And he's been even up to [specialist hospital] and he's been told he's got some sort of peripheral neuropathy, but he hasn't been given a, an MND diagnosis. And his condition is deteriorating - not to the extent mine has, he can still walk about - but he trips over and his ankle is very weak and so on. But I think he finds it depressing because he doesn't know what's the matter with him, and they haven't, you know, they haven't made a definitive diagnosis, really. And I think he finds it very depressing. And I was much more depressed in that period of eighteen months than once I'd found out what was the matter with me. And in fact I used to sort of sit on the sofa of an afternoon and have a, a half-hour or a forty-five minute nap, whereas I don't do that any more. Because now I know what's the matter with me, I know what I'm up against. And it, it's almost a case of, 'I'm not going to get, let this bugger get me. I'm going to fight it all the way.' And I, if there's something that I think might be a progression, I'll just push it to one side and just get on with it.

 

One day when out running she noticed she couldn't control her left leg. She began tripping over a...

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Well, I'll talk about retrospectively in a moment, but initially the first signs that anything was not right was I'd been on holiday in the July/August and I came home, and I was very, very fit, so I would go running quite a lot. And I went running - now, how many years ago is that now? December - that's 2005, 2003 - about 2001, about August 2001. I went running and I was running along the road and my left leg, to put it crudely, wouldn't do what I wanted it to do. It just seemed to have a mind of its own and I couldn't control it properly. So I stopped running and started walking. I walked for a few hundred metres, and then started running again and it seemed okay. But I had to repeatedly do this, stop and walk, and then run. And over the next few months when I went running the problem got worse. Now, I did trip up a few times but I didn't attribute that to anything. I just thought that was clumsiness. I remember once tripping up a kerb and landing in a pile of horse's pooh [laughs], and thinking, 'Oh, that's a bit annoying.' And looking back on it, it was obviously because I had the foot drop and I was tripping over. Now the problem with my leg got so bad that I actually couldn't run any longer, and then I had to take up power walking. And then I really couldn't go out at all. So I ended up going to the gym and I would power walk in the gym on the treadmill, where at least I could control what I was doing. And then this, this went on for, well, it was well over a year. And about the following October, so like fifteen months later, I decided that it was such a problem that we would go down to my stepchildren down in [town] and they would go out for walk and I'd say, 'Well, I'm sorry I can't go for a walk because I can't walk very far.' And they'd sort of look at me as if I was weird and, 'Why can't you?' 'Well, I've got this funny leg.' And I think people thought I was a bit, sort of, of a hypochondriac.

 
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Equipment is sometimes poor quality - she was given a shower seat which went rusty within days....

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We've had the occupational therapists here'the trouble is they're not very - now, let me see, how should one put this? They're very helpful and they'll offer you things, but the quality of what they offer you is so poor - which is ridiculous really - that you just in the end say, 'Don't bother.' They gave me a seat for the shower, which went rusty within like two days. And there was just rust in the shower. So I rang them up and I said, 'Well, this seat's rusty.' 'Oh, okay, we'll give you another one.' So they gave me one which was exactly the same. So that was just totally pointless. And they sent somebody out to put a handrail on the shower wall before they'd even assessed whether we could have a handrail on there. Because it's not a solid wall, so that it couldn't go on there. So they try to be helpful but they're sort of a bit wasteful of resources.

And did, where did the things like the trolley and the wheelchair come from?

Well, that Zimmer frame came from my physio, she got me that. I have a wheelie trolley that I can wheel food about the kitchen. That did come from the occupational therapist and that is absolutely brilliant. I have a chair which I sit on in the kitchen, which I actually bought from a charity shop for a tenner. And I have another Zimmer frame, which a friend from the gym gave me when her father died. And I have to say that, with regards to disability equipment, I find it amazing that you can't find second-hand equipment somewhere. There must be somewhere where there's a huge pile of second-hand disability equipment. Because this little three-wheeler walker or Zimmer frame, whatever, that this friend gave me, she couldn't give it away. Her father died and she tried to give it to all sorts of people and they said, 'Oh, don't want that.' So she said to me, 'Pauline' - this was before I knew I had motor neurone disease - but she said, 'Without being rude, Pauline, do you think you could use this?' And I said, 'Oh, yeah, thanks very much.' And I've had it for about three years. And it's brilliant.

 
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Her neurophysiotherapist recommended toe stretches to stop her toes curling over. A chiropodist...

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But a lot of it is networking. You speak to other people. I've got a friend who has qualified as a chiropodist as a sort of second career, and I was talking to her about the problem with your feet is that your toes claw over. Well, that's very uncomfortable in shoes, and of course it doesn't help you to walk very well either, even though you can't walk very well in the first place. So I got some information from my neurophysio about doing toe stretches, the same as you'd stretch any other ligament on your body. So you do an arm stretch when you've done arm exercise, you hamstring stretch, you do toe stretches to stop the ligaments from shortening. But also you can buy these little pad things that go under your toes, which are made of chamois leather or silicon, which push, splay your toes out a bit, stop them curling over so much. Well, I wouldn't have found out about that unless I'd spoken to this friend. So all that sort of information really should be available to other people. So I think that sort of stuff could go on a website.

 
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It's hard to find detailed information about suppliers of useful products. It would be useful to...

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If you look at the MND newsletters and the D'feat magazine, there's a lot of information about research and how they're raising funds, and letters from people saying, 'Oh, my mother coped with it so well.' But there's nothing constructive about, 'What happens if I get this?' 'How can somebody help me with that?' How do I find out about this?' There's nothing really constructive. No advice. There should be an advice section where people can write in and offer information. I think that's sadly lacking'.I mean practical advice, like buying these things to go under your toes or wearing sheepskin boots. And sourcing them to get the best value, the best price for the boots. And, you know, really trying to find out where you can find some decent shoes to wear. I spent the last two months trying on sandals and trying not to buy the ugliest sandals that existed, you know.

 

She went to a support group meeting, but felt it was more aimed at carers. Exchanging practical...

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Well, I went to this lunch. I'll tell you about the guy I met first of all. Lovely chap, 43, diagnosed with MND, very sad, family, 12-year-old son. And he and I got on very well, because he was a builder and he'd moved into a bungalow and was doing all the building himself. I said, 'Oh, so who's doing the building?' He said, 'I'm a builder.' And I said, 'Yeah, but you've got MND.' And he said, 'So?' So a man very much after my own heart. And he said to me, 'Do you find your toes curl over?' And I said, 'Yes. But you can do this and this.' So I managed to impart some information to him. Anyway we met at this MND lunch. And the lunch had about forty people at it, and out of the forty people, eight of them were motor neurone disease sufferers. So to me everybody else was a hanger-on. Now it's not their fault, because I think a lot of them are spouses of people who've had motor neurone disease and died, and they sort of got into the sort of swing of going to the, but it's like they all pat each other on the back, and I, I don't know what they're doing for anybody. 

We went to this lunch, and what did it do for me? All right, I met other people who have motor neurone disease. Do I really want to do that? Because there were people there who were quite badly affected. Do I really want to see what I could end up like, and have everyone patting each other on the back? And holding raffles, the proceeds of which were paid for by myself and my partner and other people and their - you know. So we were all paying the money into the - it just, the whole thing just seems pretty ridiculous. And I'm not really sure where, where the whole thing's going. I just feel as if it is a self-help group for, for spouses of people who've died of motor neurone disease.

So it would be better if they had some targeted meetings that were for people with the condition, and maybe something separate for friends and family?

Well, I just don't know. I'm trying, I've been trying to work out what would be a better format. But I can't believe that having a lunch that's - I'm not sure who paid for it. I think it was partially paid for by the place we were at and partially paid for by the Motor Neurone Disease Association. And if that's the case, I'd rather the money was spent on research than having a Christmas lunch. And I'm not really sure what's the best way to go. But I'm sure that isn't the best way to go. I'm sure as hell it isn't [laughs].

 
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She can still drive to work and enjoys the independence and the income. She doesn't want to think...

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Yeah, so being able to drive, and then going on from being able to drive to my job, the fact that I can still drive is fantastic. Because as I said to you earlier, I stopped going on trains on my own because of the problem, and anyway I couldn't walk far enough now to get on a train. I can drive up to London' They've got a parking space for me, I park the car, go in, do what I want to do, come out, get in the car and drive home. So it gives you a lot of independence. And I can still do my job, almost as well as I did it before. Nowadays I wouldn't go up into central London hospitals, whereas before I would do, because I'd just get on the Tube and go from one to the other, or I actually used to cycle up occasionally. So my job has really changed. And I'm lucky, really, in the type of job I do that I could sort of alter what I do and still manage to earn quite a good salary' And I like the fact that I'm independent. I have my own money and I can do what I like. And if I want to go and buy expensive clothes or spend loads of money on my children, which I do, then I can do it. And so again I don't want to think about the time when I won't be able to do it.

 

She got into a 'vicious circle' of anxiety, hyperventilating and imagining she couldn't swallow....

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However, at that point in time I didn't know that the speed at which the disease starts is the speed at which it progresses. So it never speeds up. It might slow down or plateau, but it never speeds up. I only found that out about seven or eight months ago. So that again is another positive thing. But he said to me, 'You've got this flail leg' and so there were all sorts of questions about that. 'And basically your legs will just get weaker. And you may go for five, ten, fifteen years before it gets into your hands. And 15 per cent of people don't get it in their hands or their breathing or swallowing. But you just don't know if you're going to be one of those people.' So it's really a case of knowing that you've got the leg problem, and just acting as if you have a problem with your legs and not, not letting it affect you mentally. Because if you continually think about what might happen, then you just can't live a proper life, really. I did actually have a word with one of the other consultants. He said, 'Is there anything you want to ask?' And I said, 'Well, yes, I get this tingling in my hand, in my right hand.' I didn't really tend to get it in my left. 'And I'm worried about that being a progression.' And he said it was anxiety. And I said, 'Really?' He said, 'Yes. You're hyperventilating, although you wouldn't realise it.' And you only need to breathe I think it's ten more breaths a minute before you're hyperventilating and depositing calcium in the blood, which causes tingling in your fingers. And if you think you're doing it too much, breathe into a paper bag. But I managed to stop it.

Because I knew that he'd told me that, so I knew it wasn't a progression of the disease, so I stopped worrying. I had this sort of vicious circle where I was worrying, and getting it, and worrying and... In fact just one other thing, when I was diagnosed I started swallowing about [laughs] three or four hundred times a day. Because even though a sane person would know you don't suddenly get bulbar symptoms with motor neurone disease the next day after you're diagnosed, obviously it became an obsession, and I couldn't stop swallowing and I strained my throat. And my GP, with whom we're very friendly, had rung me up, and I told him. And he said, 'Well, you've got to stop doing it.' I said, 'I know, I know I've got to stop it. But it's really difficult to do it.' So I had to get over that as well and stop that.

How did you get over it?

I just kept telling myself not to be stupid. I mean, you've got to, you've got to be sensible. You, otherwise your whole life just falls apart. And, you know, people say to me, 'Oh, you're an inspiration, because you go to the gym, and you do that.' And I don't want to be an inspiration. Well, I suppose in a way I could be, because it would help other sufferers who, who, you know, need something to guide them. But I do it for myself, really, because it just keeps me normal. I just want to be as normal as I can. And I don't worry about the fact that people see me walking as if I'm drunk or, you know, sitting in my wheelchair. I, you just have to ignore that and, and just do things the way you always used to do them, as well as you can, based on your disability, really.

 

When she's tired she feels the best way to deal with it is to just ignore it and keep going, but...

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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.

 

She and her daughters laugh about it when she falls over. Life is too short to get upset about it.

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You have to laugh about it, don't you? Like when I fall over. I mean I, we were in a restaurant in South Africa a year ago, and we were standing in the foyer of this restaurant and it was a sort of a cobblestone thing. And I obviously moved my foot wrong and I just fell over, I just keeled over. And another family had come in to the, the forecourt and they looked at me as if I was drunk. And we were in absolute hysterics while one of my daughters had to pick me up, because you just have to laugh about it. We used to laugh when I used to trip over when we had no idea what was the matter with me. I remember going into [town] with my older daughter and I'd got a huge blister on my foot from some shoes and I said, 'Look, I'm going to have to wear my flip-flops. And you know what I'm like if I wear flip-flops, I'll trip over. And so you'll have to watch me.' And we were walking along and suddenly there I was sprawled across the pavement. And she said, 'Mum, you could have landed on that little boy.' Not, 'Oh, you poor thing. How are you? Did you get hurt?' [laughs] So I thought, 'Thanks very much. That's nice.' So you, you just have to laugh about it. You can't, you can't sit there grizzling, you can't bemoan your fate, because life's too short. And it's certainly too short now. So.

 
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She gets irritated that she cannot run the household and has to let her husband do it. He finds...

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And the mobility affects you, if you're a woman I think it affects you an awful lot more. Because if you're a man, okay, you lose the ability to go out to work possibly, although not necessarily. But with a woman, you run a house. And I can't carry the washing about. I can't carry shopping. I can put the washing in the machine, but I can't get it out and hang it on the line. And with me that is a big problem, because I am obsessive about where the washing goes on the washing line. And I have now to block that out and not watch where my husband hangs it. Because I have this thing about hanging it in a symmetrical way all round the line and then back round. So that really is a major problem for me. I love seeing washing blowing on the line and if people hang it in a bad way I don't like it all. In fact my best friend came round to visit me and she stayed the night and was hanging washing on the line. And she deliberately hung it all over the place just to be awkward. So that's really irritating.

Now with regards to my husband, I think he's found it a lot more difficult. Because as I was saying, I think he thought that in his dotage I'd be looking after him, because he's seventeen years older than me. And it's come to a situation where he has to, well, I suppose look after me, in a way. But I am still fiercely independent. I find it incredibly frustrating that I'm not in control of the house. And that isn't that I'm a control freak. It really is that a woman runs the house.

 
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She does not want her daughters to feel they should look after her - that is not why she had...

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I certainly wouldn't ever want my children to have to look after me, ever. My mother's 79 and she's quite decrepit, but she still lives independently, and I don't think she'd ever want that. Well, I couldn't look after her obviously anyway. And I wouldn't wish that on my children. I wouldn't want them to have to look after me. Because I don't think I'd be a very good patient for a start. Because I'd get very frustrated, and I'd probably be a very angry person. And it's just not fair. Your children, you don't bring your children up so that they look after you. That's not what life's about. You know, they've got their independence now, and let them get on with their lives and live their lives, and not have to look after their decrepit mother. So that is quite a big problem.

 
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She feels religion has little to offer. She relies on her own fighting spirit, but thinks you're...

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Well, I mean, I'm not religious. I've been confirmed, in fact when I was about 30-something. But I do have this sort of feeling that God's forsaken me. And I know that's a horrible thing to say, because people die all the time and God can't save everybody. But I sort of think, 'Oh, he's sort of given up on me a bit.' And so I'm certainly not a religious person. So where do I draw the strength from? Belligerence, I think, really. And I've got a very good insight into my own personality. I know I'm impatient, I know I'm impulsive, I know I can fly off the handle, I know I can be belligerent, I know I can probably be difficult to live with. I know I'm quite funny, I know I'm quite resourceful, and I know I'm quite talented in all sorts of silly little ways. So I think I've got a lot of insight into my personality. And I just think, 'Well, sod it, I'm just going to get on with it.' And I've always been like that, always. I've never crumbled and I've never got depressed. 

And I've always felt that I'm quite a strong person. I don't stand any nonsense from people. If people have a cold, they've got a cold. They're not dying, they've got a cold. And, you know, I'm not going to sort of look after them in bed because they've got a cold. And if I've got a cold, I've got a cold. And of course I'm fed up with it, but I get on with it. And I think that's the way I've looked at everything, really.

But I think if you've got the personality to fight things, you're lucky. Because that's what you're born with. I think it is a genetic thing. It's like people being addicted to smoking or drinking or gambling or something. You know, it's unfortunate that you've got that sort of personality. I've got the sort of personality where I am very strong. I smoked when I was younger, and one day I gave it up. And that was it, I never smoked again. So I haven't got an addictive personality, I haven't got a depressive personality. And I'm very lucky, really.

 

She feels it's her right to choose when to die, if her quality of life becomes poor. She worries...

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I know nobody'll like this - but I'm all for popping off to Switzerland, I'm afraid, if.

Tell me more.

Well, as far as I'm concerned, if I get to the point where my quality of life is poor and I haven't got the independence, I don't think that your family has a right to tell you what to do or what not to do. You are your own person. And, all right, you might deprive them of their mother or their wife or whatever, but you, you can't live an existence that is so poor just for other people's benefit. And if it got to the point where I had a really poor quality of life because of the progression of the disease, I'm afraid that's where I'm going.

Have you talked to family or made any arrangement?

Yeah, I've told them, in no uncertain terms. And they just don't want to talk about it. And obviously for the time being we won't. But if in the years to come that's what happens- I felt that the depiction of the motor neurone disease woman by that Gillian what's-her-name on Holby City was a complete load of rubbish, frankly [laughs]. And in fact my husband was away when she popped off to Switzerland, and he rang me up and said, 'Are you all right?' And I said, 'Why?' And he said, 'Because that's been on.' And I said, 'Oh, I didn't even watch the end of it,' I said. 'It was really boring.' Because it just wasn't a true motor neurone disease sufferer to me. It is very good that they want to put it in the news and try and tell people more about it, but I felt it didn't, it didn't enlighten people properly. Because one minute she was on a ventilator and the next minute she was ringing people up on a telephone and, you know, walking with one walking stick. Well, excuse me, but if you've got full-blown ALS and you haven't got, and you're on a ventilator, you certainly won't be walking about with a walking stick. So the whole thing was all a bit of a joke. Because one minute she couldn't talk and the next minute she spoke normally and said, 'Oh, hello, I'm popping off to Switzerland now. Do you want to come with me?' So it was all very bad. In fact the best example was on ER. And in fact I found that by mistake. I was sort of flicking through the television channels and suddenly there was this guy in the final throes of motor neurone disease. And that was, I'm actually a bit disappointed I didn't see the whole thing, because you could have seen what it was like, somebody dying. He obviously didn't get killed, he just died. But'

Have you got as far as writing anything down about it, or is that something for the future?

What? What I'm going to do?

Yeah.

No, I haven't actually. I started writing a book about my disease but I've only written one page. Because I write a lot of poetry, so I thought I might write a book instead. But, no, I suppose I ought to do that, have a sort of a living will, so to speak, and say, 'That's what I want.' But, yeah - [brief microphone interference] and in fact my daughter, my youngest daughter, the other day she said, we were talking about cremation and I said something about being cremated and she said, 'Oh, yeah, Mum, but I'll make, have you made into a diamond.' She said, 'So you needn't worry about where you're going to be scattered.' I said, 'Oh, that's all right then. Thanks.' So we just joke about it, really. Because you've, you've got to, haven't you? Because if you know something, it, it's really odd because everyone knows they're going to die at some point. You don't know whether you're going to be run over by a bus tomorrow or, or what could happen. So me saying I've been given a, an illness that says I'm going to die, well, of course everyone’s going to die. So the fact that I don’t know when I’m going to die, I suppose it’s all a bit silly worrying about it. But what worries me about it is the way I’m going to die. And I don’t want to die drowning because I can’t breathe, or just sitting there having someone shovelling food down my throat. You know, I just don’t want that. And the indignity of it is just too much to bear. I’m, I’ve lost dignity as it is because of things having to be done for me and having to sit in a wheelchair, even though I wheel myself. I just don’t want the indignity of dying like that. So I’d rather just say, “Right, thanks very much. I’ve had a good innings and I’m off now.” And that’s it.
 
Footnote: Media stories about MND are not always realistic. Given the variable way MND affects each person, it is theoretically possible for someone to be on a ventilator but still able to walk with a stick, but it is more likely that the person would have very limited mobility at this stage. It is unlikely someone would stop using a ventilator once they had started using one. Drowning or choking is feared by some people, but with good symptom control and palliative care it is extremely rare and very unlikely to be a cause of death.
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