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Liz - Interview 22

Age at interview: 45
Age at diagnosis: 37
Brief Outline: Liz was diagnosed with rare inherited (familial) form of MND 8 years ago (1998). Sixth member of her family to be diagnosed. Has weakness in her arms and legs, and some speech difficulties. Has a PEG but does not use it yet.
Background: Liz is a former classroom support worker for special needs, divorced, with 2 children aged 18 and 17. Ethnic background/nationality' White British.

More about me...

Liz's mother died of motor neurone disease when Liz was 3, but she did not discover this was the cause until she was 19. Two uncles also died from MND, and her maternal grandfather probably did too, although his death certificate said the cause of death was 'creeping paralysis'. Liz and her sister got in touch with the newly formed Motor Neurone Disease Association in 1980, but at the time were advised it was just coincidence and not something they should worry about. When Liz's sister was diagnosed in 1992, it became obvious that the family was affected by the rare inherited or familial form of MND. By this time, Liz already had two young children. Her sister died within 2 years of diagnosis.

About three years later in 1998 Liz herself started feeling heaviness in her legs and was referred to a neurologist. MND was diagnosed, and she was put straight onto riluzole. She wonders if this has helped slow the progression of the condition, as she has lived years longer than other members of her family. A cousin has recently been diagnosed and her condition is deteriorating much faster. 

Telling her children was the hardest thing, because they had seen their aunt with MND and knew about the condition. She promised them she would fight it, and wants them to remember her as someone who lived as full and active a life as possible. If she had known the family had the inherited form of the condition she is not sure she would have had children, but she would not be without them now. She feels they have given her something to live for, to support them and see them through school. The children themselves both say they do not want to have any children, and they do not yet want to have screening for the SOD-1 gene mutation because they would rather not know. 

Liz's husband found it very difficult to cope with the diagnosis, and they split up two years after she was diagnosed. She lives in a flat with the children which they have had adapted so they can all stay there. She has a carer every morning, and all day one day a week. Liz carried on working as a classroom assistant until three years ago, when she was finding it difficult to walk around at school and could no longer talk loudly enough in class. Giving up work and becoming dependent on benefits was a very difficult decision, and she finds it frustrating that she has to be reassessed for suitability for work in order to keep her benefits. 

Liz has since become a visitor for the MND Association. Although she uses a wheelchair and scooter she can still driver an automatic car, and this has been really important in maintaining her independence. Her speech is slowly becoming more affected, and she has had a few choking fits. The children have had to call an ambulance twice. She has found that staying calm and leaning forward helps her recover. She has had a PEG feeding tube fitted, but so far she has not needed to use it. She has been told she may need it replacing before too long, and sometimes feels perhaps she should have waited a bit longer before having it.

 

MND runs in her family so she was referred quickly when she developed symptoms. She didn't want...

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Well, I guess my first knowledge of motor neurone disease would have been when I was about 19. That was when I discovered, because my mum died when I was 3, but I'd never been told how she died or what it was, and that was when I found out that she'd actually died of motor neurone disease, as had one of my uncles, her brother. And our grandfather had died of what they said at the time was creeping paralysis. And then in 1980 another brother, an uncle, my uncle had, he was diagnosed. And that was when my sister and I, mainly my sister, decided to get in touch with the association, which at the time was probably about a year old, as a, a charity. And all the information that we got then was that there was no way it could be hereditary, that it was coincidence that three members of the family had been hit, and the likelihood of it happening again was very, very slim. So we got on with our lives. And my sister did trace the family tree, couldn't find anybody else that had died prematurely. So we assumed that that was it, we'd never hear of motor neurone disease again. And then unfortunately in 1992 my sister was diagnosed, by which time I'd already had my two children, and she died in 1994. And then round about 1997 I started having problems with my legs feeling heavy, and by the time I finished work, walking home was a real effort. And at night I had muscle cramps and twitchings. And I was running for the bus one day with the children and my, both knees gave way. And I suddenly started thinking, 'This, is it not like the symptoms my sister described?' And I remember phoning her husband up and having a chat to him. And he said, 'If it is motor neurone disease, you know better than anybody that you need to know sooner rather than later.'

So I went along to my GP, who was wonderful. And he straight away said he didn't think it was, but given the family history he would refer me to a neurologist, who would put my mind at rest. Six months later I went to a neurologist, who said the same as my GP, 'I don't think it's motor neurone disease, because you're not describing any muscle weakness as such.' But he ordered EMG tests. And when I had the tests a letter came that I had to go back to the hospital, and I knew then that it wasn't good news. He told me it was motor neurone disease and he was very sorry, but he would refer me to another neurologist, who would do another check. So I was referred straight away and she, my neurologist confirmed again that it was motor neurone disease. And I remember saying to her, 'It's not. If I hadn't have told you my family history you would have done more tests. You're not looking for anything else.' And, and, but unfortunately I think I just wanted it to be anything else other than motor neurone disease. Having been a carer, I already knew too much. So, and the initial reaction was that I would have eighteen months and then that would be it. And that was, every other member of my family has gone in such a short time. 

But luckily it was in the very, very early stages, probably about two years before someone else with MND would even present. But a lot of that was because of my knowledge of the illness, which had made me go earlier. I mean, a lot of people have said, with it being in the family was I not tempted to just ignore it? And yes, I was. That would have been the easy option. But I also knew that the sooner I was diagnosed, then I could start making the most of the time that I had left, rather than wasting it pretending it isn't going to happen. Because I think the earlier the diagnosis the better. And I think that having the riluzole so early in the illness could have brought me prolonged life expectancy, as well.

 

She might not have had children if she'd known she had familial MND, but she's glad she has them....

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But I'm also aware that I've got to be as positive as I can, because I want the children to have positive memories of MND, not the negative one that I had originally. Because God forbid if one day one of them develops it, I don't want them to then think, 'My life's over.' I want them to remember that I've abseiled off a building with MND, I've met Cliff Richard with MND. I've done a lot of things that I would never have done previously. I've done the Great North Run. And I've tried to let - and we have a laugh. I try and - it's the most important thing that life goes on, it's not the end of the world, and try and give them as positive an outlook as I can. But one of the hardest questions I've ever been asked, [son] was 11 and he just point blank sat - I was in the car, we were parked up - and he said, 'Did you know when you had me that you were going to give me something that I was going to die of?' And I remember sitting there just frozen, thinking, 'How on earth do I answer this question?' And I honestly said, '[son], I didn't know.' And thankfully I didn't know. At the time that I had my, I had my children I didn't know for definite that it was. But I wouldn't have not had them. And I had to explain to him that it didn't make any difference, and hopefully he won't have to develop MND, and one day the cure will - hopefully in their lifetime - I don't think it's going to happen in mine but I've got every faith that, for them, that things will be different. And that's the one thing that I can keep telling them.

So would you, I think you said you, you would have had children anyway, even if you had known there was a family.

No. I think had I known, I would have chose not to have children. But then that's an easy assumption to make when you've already got them. So, and I wouldn't be without them now. They keep me going. They're a reason to be here. So I've got a lot to be thankful for. But I really don't think I would have gone ahead had I known for definite that this was going to happen.

So you and your sister, have you got other brothers and sisters?

I've got another sister, who so - is fine. 

And were you all, you and your uncles and mother, were you all much the same age when it was diagnosed?

Pretty much. My mum was 37 when she died. Her brother was only 28 when he was diagnosed. Her other brother was the exception. He was 50 when he was diagnosed. My sister was 39 when she was diagnosed. I was 37. And yet my cousin in Tasmania was like her father. She was 50 this year, so she's the same age as her father was when he was diagnosed. Yet we seem to be around the same age as our mother. And our grandfather - and I was saying he probably did have motor neurone disease - he died when he was 42. So it seems, seems to be a connection with age.

 

So far her children have decided not to be tested for the SOD-1 gene mutation. At the moment...

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Have, have you talked to them about how they feel about testing?

I have. At the moment they don't want to know. They just want to get on with their life. Neither of them at the moment want children, for obvious reasons. When my son was 16, he actually asked me if a doctor would consider giving him a vasectomy. Which he's, we've never really looked into that, other than that first conversation, because I think that's a bit drastic.

I suppose that might be the point at which they would actually want to have a test. If they had a partner and'

Yes.

'they wanted to have children after all, then they might.

Well, it's something that I've got no control over. It's actually their, their decision, their choice. And I really don't think, although I could cope, if I found out that I'd passed it on to one or both of them I couldn't cope with that information myself. And one of the things I do know is that if one of them was to develop it, often the one that is okay has loads of trouble dealing with the news that they're going to lose a brother or sister. So it's, it's like a ripple effect. Nothing's as straightforward. Because my neurologist was just talking about maybe giving riluzole to people with the genetic form in the hope that it might correct or prevent it on the on-start. But in order to do that they have to have a genetic test. So it's a doubled-edged sword whether they really want to know - if so, they might be. There's a lot of issues really around genetic testing. But I do know that if they decided to have a family later on, we do have the technology to screen the embryos and take the SOD-1 mutation out, which would technically prevent them from having any more children with that, but then again, in order to do that they would then have to find out if they were carrying the genes, or they would know they were carrying the gene if one of the embryos was faulty, so.

Mmm, yes, it raises huge issues.

It is. It's a massive - I remember my neurologist saying to me that until I'd openly talked about it, he was just coming at it from a medical point of view' 'Oh, well, it's better if they know because then if any treatments come out we can give them' and this. But he hadn't actually realised the huge knock-on effect it has on their life, on mortgages, and...

Have they had counselling separately about?

Not at the moment, no. And they can't, you can't do anything about genetic counselling, really, till they're 18. I did set up a link with a counsellor when they were about 12 in the early days, in the hope that if they ever wanted to talk there was someone there. But so far they haven't taken me up on that.

 

Her PEG was fitted early, to prevent weight loss. She has had two infections, but now hardly...

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You've got a PEG, I think you said, but you're still eating and drinking normally as well?

Yeah. I had it put in in March, because I was losing weight slightly. But because I'm not heavy anyway, losing half a stone to me was a lot of weight. And then I was, I take build-up drinks to get, that's kind of kept my weight stable. But there's a lot of evidence that if you have the PEG tube done early, rather than when it's absolutely necessary, the recovery is better, and life expectancy. So I agreed to have it put in just - way before I needed it for feeding - so that it was there if ever there was a problem, rather than having a drastic weight loss.

So do you use it at all at the moment, or?

Not at all, no.

It's just there waiting?

It's just there, yes.

And did, have you had any problems with recovery or infections or anything?

I've had two infections, and it took a long time for the wound to heal. And those are things that I didn't expect. I thought it would be in and over and - but it took more looking after than I originally thought. And luckily I've got an extremely close friend who - and they wouldn't let me out of hospital unless two people could look after it, and I didn't want the children to feel that the main - and she calls every day, and turns and cleans it, washes it out. And now, if she can't come, my daughter does it. But on the whole it's my friend. And I've got another friend, so that if I've got to have a break she's on hand to do it. When I had a, a holiday in the Lakes I took my other friend with me because she can do it. So that gave the one at home a break. And, but I, my theory wasn't just - if I'm not going to need it for feeding get it put in and that's the end of it. I didn't realise that there was an ongoing care.

Do, do you regret having it done?

I did regret having it done in the first six months, because it kept flaring up and I think, well, I've had lots of problems with it. But now I kind of hardly know it's there. But now I have to actually - the PEG itself only lasts eighteen months, so I'll have to have another one put in. Which I had, didn't know at the time. And I think I may have waited a little bit longer, had I realised that that was the shelf-life, really, of a PEG. So I'll have to go and have another one put in.

Footnote' PEG tubes can last much longer than 18 months, and there is no need to replace the tube if it is still working well. Each person must be individually assessed to check whether a replacement is needed and when.

 

It was hard having personal care from different carers she didn't know, and tiring explaining...

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What about having carers in? How is that?

That's hard. Originally I only had carers in once a day - one, one day for housework, and then I, eventually I got housework and two evening meals, so that the children weren't always cooking, as food was becoming a problem. And when I fell and broke my hand last year, I upped the care every morning for showers and what have you, and then went back to my normal. And then earlier this year I was struggling to have a shower because [daughter] isn't always around in the morning. So I upped the care.

And I'm fine now, because I've got a carer that I get on with and I've got -, and it's not that I don't get on with them, but I, when I was having a succession of different ones I was saying that, making the excuse that I wasn't going anywhere so I don't need to get dressed. Because having personal care, it's not very nice when you don't know the person. And it's hard when somebody has to shower you and help you get dry and then dressed, and you've never met them before. It's easier to say, 'I can manage', and then wait until somebody's in at lunchtime and maybe get dressed then.

So now you've got continuity?

Now I've got the continuous care, so nothing's.

And how long has this carer been with you?

Three months now. And we've just hit it off. Like I just, I feel as I've known her all my life, and nothing's a bother to her.

It's just luck really, isn't it, who you end up with?

It is. But when you have to have help it's not easy, really when you have three or four different carers a week in. And not only that, it's quite tiring when you've got that many that you've got to start and show them where the hoover is, show them how the shower works. And I have to have a set of crockery left on the bench. And if I don't, didn't tell a new carer, they would automatically put them away. And then I would go and maybe want a bowl of cereal or something and couldn't get a bowl out the cupboard and so, I go hungry.

 

Doctors sometimes send newly diagnosed people to meet her. It wasn't always easy to support them...

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And so far I've managed to, to try and keep going and feel a positive attitude. But it is hard when you already know what's coming. And often doctors, because I've already lived with MND, are quick to introduce me to other patients, especially in the early days, and think, 'Oh, Liz knows what to expect and Liz'll be all right.' And often I wasn't all right, in the early days. I didn't really want to see other people, because it was a constant reminder of what was to come for me and what I'd already seen first-hand from family members. But as time's worn on I've seen that as a positive role and I do now meet quite a lot of people with MND. And it is hard meeting somebody who can't move or speak. And I think that's one of my biggest fears, that I will lose the power of speech. I think I could handle other things being taken away, but to not be able to communicate is actually one of the most terrifying things.

I trained as a visitor in 2004. Because I kind of, I'd made the decision to leave work and I was thinking, 'There's a long winter ahead.' And that was one of the other things about leaving.

It was becoming harder and harder to physically get to work. If there was ice on the floor and the car needed, I couldn't scrape the windscreen, so I had to sit for hours. [microphone interference] And then as I was, I made the decision to leave, I saw on the Association website that they were looking for Association visitors. And so I rang up and asked had they had anybody with MND be a visitor before? And if not, why not, kind of - could I? And they said that, no, they hadn't, but there was no reason why I shouldn't be allowed to do it. But I'd have to go through their interview process and, and do the, the training, which was over six months. And then I can do it. But really I was doing, it was the sort of thing I was doing anyway. It just made it more official, and hopefully made people aware that there is a local branch and there is head office and there is support, that they're not alone.

You see I was fortunate - or unfortunate - but because it's in the family I was already receiving Thumbprint [magazine] from head office. I joined anyway because of my sister. So I already knew what was available and, and where to go for help. But a lot of people who are newly diagnosed often don't, or choose not to. And also a lot of them don't want an Association visitor or any formal contact. But one of the things I can do is, because I've got MND and I am an Association visitor, people will often come and talk to me because I've got the illness, rather than because I'm - I've got like two heads. And I don't see - I see myself as, more as just a friend. And if I can help them, put them in touch with anybody that they need, then all well and good. But if they don't want any contact, that, I have to respect that as well.
 
 
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Leaving her job as a classroom assistant left a massive gap in her life, though she's still very...

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When did you stop [work] altogether?

I stopped altogether in 2003.

Was that a hard decision?

It was a huge decision. Because it's okay leaving work to go to another job, but leaving work when you're 41, 42 and that's it, and having to live on benefits, it's just not nice. It's kind of the end of an era. It's - and I did take about three months making my mind up, was I going to leave permanently or was I going to keep going? And when I went and spoke to the head, she like offered us, 'Would a wheelchair around school help?' And, but I didn't want that, because that would've meant somebody having to bring it in for me at the beginning. And I also knew that walking around school with a stick was becoming more dangerous for me with children. The slightest knock and I would be off balance. And I also found that, as my voice got quieter, that I was having to repeat myself more in the classroom. And it was all right with the one-to-one, but if I had a group of children it was quite hard. And that was hard for the children, I think, to deal with. So I decided that the best thing all round was to make a clean break. Because even if I'd gone back in a wheelchair, it would only have been a short-term solution, and I would have had to make the decision if and when to leave all over again. So I decided to go. But I still go down and see everybody and I keep in touch, but it's a massive gap. But now sometimes - not so much in the winter, but in the summer - I now think, 'Well, how on earth did I find the time to go to work?' Especially now that I've got more care in. And my days are, are fuller. And if I'm out visiting, I try and get out in the car. So really now it's better that I'm not there. But at the time it was, 'What on earth am I going to do with my days? Am I going to end up sitting staring at my four walls?'

 

The first time she choked she was terrified. Now she manages it by staying calm. Choking is unlikely to be a cause of death with MND.

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I have difficulty swallowing and I've had quite a few choking attacks, which is one of the reasons for the PEG. On two occasions the children have had to dial 999 and get paramedics out, but most of the time I'm more or less in control. But it's quite scary, because the noise - it's hard to explain the noise that you make, because it isn't like before I had MND, if you got something went down the wrong way and you coughed, it's nothing like that. It's like there's no air, and it's a horrible - and the people around me tend to freak and get scared more than I am. In the early days I was. The first one I had, I was absolutely terrified. And it got worse, because I was more concerned that the children, who were in bed at the time, would hear this horrible noise and come down and panic, but thankfully they didn't. But about three months ago I was at a support group for MND, and one of the ladies there choked, and that was the first time I'd ever heard someone else with MND choke, and it was horrible. And I suddenly realised why everybody around me panics, because I panicked when this lady - and it's, but it took that for me to realise that - and I now know why everybody runs around and doesn't know what to do. 

That first - [And there isn't] Sorry. That first time, did it resolve itself? 

Eventually. 

OK.

And once, it's kind of, if I stay calm and try and control my breathing and lean forward, that usually helps. But in the early days I didn't know that. So my instinct was to gasp to try and get air, which actually made the choking worse than calming down. And I remember walking around hanging on to things and trying to, thinking, 'If I keep moving, air will get in.' And I actually found out that that was the, one of the worst things you can do. But it's the, instinct kicks in, and you just do what you think.

And when you've had the ambulance out, by the time they get here has it resolved, or was it?

Fortunately the first time, which was really, really scary, it was just - well, it was this time last year. My son, I was eating and suddenly was choking. It was the first time I'd had an attack where I couldn't get any air. And I was aware that - I had a warden, so [daughter] rang the warden, who rang the ambulance, who rang back. And the next thing I knew, I apparently passed out, and my son pulled me by the legs on to the floor and put me in the recovery position. And once that was done I got air and started to breathe. But while all that was going on, I was kind of aware that my daughter was on the phone, and I was thinking, 'I'm choking here. Who are you talking to?' kind of [laughs], not realising that she was on the phone and it was the paramedics calming her down, and obviously to relay to my son what to do. But I was totally oblivious to all that. And I remember lying on the floor, getting my breath, thinking, 'Nobody knows where the Christmas presents are. They, I've bought them but nobody knows where I've hidden them.' And then the other part of me was going, 'Don't be stupid. Nobody chokes to death with MND. So why should you be the first one? I'm not going to.' But that was pretty, very, very frightening.

It is something that a lot of people are afraid is going to happen to them'

It is, yes.

'isn't it, choking to death? I mean, what would you say to people from your experience?

Oh, the choking attacks are very, very scary, but it's very unlikely that that will be the cause of death. It’s more than likely respiratory failure. It’s, I don’t think anybody has actually choked to death with MND. But people think that that, that is how you’re going to die. But they are pretty scary. And the second time was a bacon sandwich [laughs], when my carer was here. And she, my son told her to put us on the floor and he rang. And it seems that once I’m in the recovery position I’m fine. But I remember asking what was the best thing to do. So that if it happened outside, could somebody just put me in the recovery position? But apparently that might not work, depending on where the food’s lodged. Touch wood [touching head], it’s worked so far. It’s a standard joke now. I always say to everybody, “Well, if I choke, shove us on the floor.” [laughs] But.
 
Is it always food or is it sometimes just--?
 
It can be liquid. Anything. And it can also be if you’ve got a cold. When I have had a cold, when I get up in the morning and it’s chesty or, then I can choke just on that. It can, there isn’t really any rhyme or reason. I mean, I avoid the obvious like biscuits and cake and peanuts, but in general it can be a mouthful of tea. The first time I choked it was a, it was a mouthful of water. So you just don’t know what’s going to happen.
 
Footnote: Choking is feared by some people, but with good symptom control and palliative care is extremely rare and very unlikely to be a cause of death.
 

She felt direct care payments were too much paperwork. She hates the benefit system and having to...

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They did ask me to go on direct payments for my holiday, short holiday break. But when I got all the rigmarole and paperwork, and then I, it was at the time that I fell and broke my hand, and I kind of rang my social worker up and said, 'Look, just book wherever it's disabled access and sort it out.' Because I really couldn't be bothered with it all. You've got to open up a bank account and then you've go to do all the auditing at the end of the year, and I don't really know anybody else that's doing it. But my theory as well is I've got enough on my plate. And no disrespect to my social worker, she's lovely, but that's what she's paid for. And it was kind of, it's a, it's a hassle I really don't want. And I know that if you go on direct pay, payments for care, you have to do the interviewing. And, and I, I'm not very good at, at that sort of thing. I, I'd be frightened that they'd be the wrong person. You don't know that until you - whereas coming from a care agency they're police-checked. And that's all done, done for you.

So you'd rather just delegate it to them?

Yeah.

Yeah. And in terms of finances, since, having to give up work and be dependent on benefits, how has that affected the family financially?

Hugely. I mean, it's just, a, a lot of it's me, because I've never been - I've worked all my life. So to suddenly find myself relying on state benefit is hard to accept. And, and if I could work, I would work. I'd rather not be on them. But there's just, they're barely enough to scrape by. And if I didn't get my Disability Living Allowance I would have to sell, because the Disability Living Allowance pays my mortgage. If I was in rented I would get my rent paid. But you don't get all your mortgage paid, and you only get about £80 a month help. The rest of it I have to find. So luckily I have got DLA, in order to have my car and my mortgage. And maybe if the children were older - you see, I can't go into sheltered, because you can't take your family. And so I've got to try and keep this for as long as possible. And hopefully so long as the children have, want a home here then - if they up and left I would probably have to rethink. But while it's their home, I'm, I've got to try and keep it. But it isn't easy having to rely on benefits and constant form filling in.

And I don't know at what point they think that somebody who's terminally ill's circumstances are going to change, but I repeatedly get letters and forms to fill in. And one of the hardest ones was I got a phone call saying I had to go for a Jobstart interview. And I kind of said to the girl, 'Well, look, there isn't really any point. If I could do a job I would.' But I explained my circumstances. And she said, 'Well, if you don't come you'll lose your benefit.' I said, 'Well, I'll have to lose my benefit, because I haven't got the energy to come up there for an interview. And I'm not eligible for work. Can I speak to your boss?' 'No, you'll lose your benefit.' And eventually, after being on the phone all day, I got in touch with somebody higher up, who said, 'I'm really sorry, but you will have to come back next year. I'll tick all the boxes now, but you will get recalled.' And you couldn't, so every year I've got to go through it and, 'Nothing's changed.' And actually I'm worse off physically now than I was a year ago. And, and the last time they did it I jokingly said, 'Well, if I'm dead in a year's time that will save us filling in a form.' [laughs].

But you just get so frustrated. And then when I hear people that are on benefits claiming this, that and the other and seem to - I think, 'Well, how on earth do they manage? What am I doing wrong? Why am I barely making ends meet and yet you seem to be able to go on holiday?” And then you think, “No wonder people get angry with the benefits system.” It seems to me that the people who need it the most - because one of the things they did, the minute my son reached 18 they took £40 a week off us, because I’m now classed as having another adult in the house. And I got that because I was disabled. Well, I am still disabled. He’s actually working, but out of the house more, and I’ve upped my care package to compensate for that. But that’s what the law says. And I could understand it if I had, say, a partner living in, but he’s my son and it’s not his job to support me. And that’s what I find hard to swallow, that my children are actually having to subsidise and support me, in order to keep the property.
 

One occupational therapist told her she could not have a ramp and she'd have to move. A different...

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It was quite hard in the early days. I was told initially that I wouldn't be allowed to stay in this property, that it, it couldn't be adapted, that it would cost too much, and that it was, it was too big a drop for a ramp, and I couldn't have one. But in the end they wanted me then to go into council accommodation. But at the time the children were both at school, I couldn't be guaranteed accommodation in this area. And then I asked if I was to move into council accommodation, what would happen to that property in the event, well, when I died? And I was told that the property would have to go to someone else who was disabled. So therefore effectively I'd be making the children homeless. So I decided that I would stay where I was, and cross that bridge on that occasion. But it took a good eighteen months of arguing with a particularly bad OT at the time, who said I couldn't have a ramp, and I couldn't have an outward-opening door with an intercom, and I couldn't have a stairlift.

And it took eighteen months of various [inaudible], but eventually I persuaded her to get a builder out and do an estimate to find out that it could be done. I've now got a different OT, who's absolutely brilliant, and no problem whatsoever. The bathroom was done really quick. I've had quite a few falls in the hall, and I knew I could get, we needed something at the top of the stairs, but how to do that I wasn't sure, especially with having a stairlift. And she came out and she said, 'I really don't know if anything can be done.' But, and she took photographs, went back into the office, and I think the previous OT would have stopped it at that. She made some phone calls, asked around. She said, 'I'm passing it on, I don't know what to do.' Two guys came out, measured up, and I've now got a gate. And I do, I feel a lot safer. And when I needed the hospital bed it was instant. My sticks, my trolley. I fell and broke my hand and she was straight out with extra, offered me a care package, extra cushions, because I was sitting for long there. And she's been absolutely amazing.

 

She advises people to 'live each day'. Professionals need to assess everyone as an individual and...

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My message would be that, although it might seem like the end of the world when you're given that diagnosis, that there is light at the end of the tunnel, and it's not the end. It's the start of one hell of a long fight, but you've just got to live each day and try, that you're living with it and not dying from it, and hopefully. And to professionals I would say that no two people are the same. Even if you meet, know what motor neurone disease is, just because that one person needed a ramp, that doesn't mean that everybody with MND's going to need a ramp. We're all different. And to at least assess everybody as an individual, not just the illness, because everybody needs, needs different things. Often I find that very frustrating that professionals think, 'Oh, well, you've, you've got to have this, because' - but that might not be the answer for me, and it might not be the answer for anybody else. We are all different. And that there is help out there for people to share experiences and that they're not alone.

        

 

She is determined to keep going for her children's sake, but she has been depressed in the past....

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

Have you suffered with depression?

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

Did you take any medication?

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

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

Has that actually happened to you?

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

 

She wants to spend every minute she has left living, not worrying. Her children and a sense of...

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You said just then, living with MND, not dying from it.

That's been my philosophy for a long, long time. That's the way that I look at it.

And what keeps you going? Where do you draw strength from?

I think mainly it's the children that - it is, it's the children. And I've got to - and I've got, I would say, a good quality of life. I mean, I'm supposed to slow down and I'm - but I never do as I'm told. I never have [laughs]. I'm not going to start now. But to me I've got two choices. I can spend whatever time I've got left worrying about my end. Or I can spend every time, minute I've got left living. And that's what I choose to do. I'd rather live each day than die each day. You're a long time dead, so you may as well make the most of whatever opportunities there are while you're living.

It sounds like humour is quite important to you.

Yeah, humour is hugely important. And I remember my son, we were having a debate and I kind of said he was so stubborn. And he turned round to me and he said, 'Don't take this the wrong way. But if I'm stubborn, I've got it from you, because you're the woman who won't die of MND,' [laughs]. And I think that's the way we cope with it, is humour, because if you didn't you're going to spend too long. And it isn't always like that. I do have days where I don't want to get up and I just want to hide away. And, and luckily I've got a good network of friends whose shoulder I can use. And a few weeks ago I had, my carer didn't come. And it was a misunderstanding, and she was on the sick but they didn't send a replacement. And I thought, 'Oh, that's fine.' I think, ' I'm not, there'll be somebody else that would need something, more care than me. So I'm fine.' And I suddenly thought, 'Really I'm not fine. I need to go out and do, I need her to go to the bank and I need her to go to the shop. I need her to get dressed', and none of which I could do. And I had to ring a friend, who came over and dressed me and took me out. But before we went out I did break down, and stamp, and 'Bloody MND it's not fair.' It doesn't seem that long ago that I could get up and get dressed. And it, it's usually when the system breaks down that you realise how vulnerable and how hard it is to do things that you took for granted.

 

Her Living Will (ADRT), protects her children from difficult decisions. You can set out what treatments you want, as well as what you don't want. Press coverage of MND makes her angry.

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I've done quite a lot, mainly because I'm a single parent with two dependent children. And it was when a friend of mine with MND died unexpectedly that it really hit home to me that if anything happened to me suddenly, that the children would probably - or friends - would have to make choices. So I decided to draw up a Living Will (ADRT), to make sure that - it's really a back-up. I'm not saying I don't want treatment, because I wouldn't have had the PEG done if I was - all it really says is that if possible I don't want to be ventilated. Because in the event of that happening it would then become a decision of my children if and when to turn that off. And that's something I don't want them to have to deal with. Even though I know deep down it might never happen, I'm just covering all the angles. And also if I lose everything and can only blink I may well be happy in that state. I don't know yet. I might be quite happy sitting watching Cliff [Richard] all day, and then again I might not. But people who know me will sense whether or not that is quality of life. And if I'm going to get a chest infection repeatedly, then don't treat it, if all it's going to do is maybe prolong my life by another three weeks or a month. So that's really why I've done it. I've just made sure that there isn't - I've got something to fall back on. And I also know that my Living Will (ADRT), isn't written in stone. It can be changed at any time. And I've got a really excellent relationship with my GP and my neurologist, who both would know, I think, would know me well enough to know that it, the time's not yet. Because initially when I was doing it, it was, 'God, if I ever -' - I remember saying to my GP, 'You will give us the tablets now if I get a chest infection? Just because I'm going to - I'm not saying, 'Kill me off'.' And it was that feeling, now I've put this in the writing, will treatment be withheld? But that's not the case at all. It's just there. And I remember when [consultant] was on about having the PEG done, saying to me, 'I know you've made a Living Will (ADRT), but -.' And I keep saying to him, 'You're misunderstanding why I've done the Living Will (ADRT). I'm not considering PEG-feeding. I'm not going to refuse artificial therapy, non-invasive ventilation, if that helps. It's just there as a - what I don't want is to be on a ventilator and kept alive. That isn't fair.

What do you feel about the, the debate about whether people should be given the, the choice of euthanasia?

I feel that it's not, I don't think there's any black or white, where - I think it's, everybody has a human right to die with dignity, but the only concern with it is that it could be abused by people. Obviously you don't want people bumping off their granny because they can't care for them any more. That would be wrong. And I think if they're not, so long as the individual, if I can still blink and I can say, 'No, I won't, I'm, I don't want my life ending' then. But I think if it, the time is right, then I think it's silly to keep somebody in that state for the sake of another month's life, or another two months' life. Because at the end of the day if it was an animal you would go straight to the vet's. But because it's human it seems barbaric that we can allow humans to continue. Then at the same time I do get very annoyed, whenever euthanasia hits the press, it's always in association with motor neurone disease. And that angers me because I know there are other illnesses out there - cancer, my step-parents both died of cancer and I know in my heart of hearts that they were helped on their way, gently and quickly, but you wouldn't dream of making a fuss, so. And I know that people, I just get annoyed that, when it hits the headlines. I mean, I'm living with MND, not dying from it, that's my philosophy, and why should that be the only illness that euthanasia covers? To me if someone has just been diagnosed, they must think that’s the only answer. And it isn’t. There’s a lot of life to live with motor neurone disease. And although I have made a Living Will, and I have made precautions, I do think that we get a bad press that euthanasia’s always associated. I mean, even when it’s covered on TV, they often go down that route, and it’s, I just think that it’s not fair. But if they did make it legal, that would probably get rid of that publicity and the bad --.

And then it would just all go away?

But I think to, I mean it’s got to be highly regulated and it’s got, you can’t just end somebody’s life.
 

She has planned her funeral with the funeral director so her children don't have to worry about...

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I did, I have arranged my own funeral. But I mean, I did get a shock because I thought it was a case of, 'Well, I'll write down what I want and I'll just leave it for somebody.' So I rang a funeral director up, who I knew, knew had done, done a funeral for a friend of mine, and kind of said, 'I want to arrange my own funeral. Can I just leave it?' And he said, 'Well, you can, but I would rather come out and see you.' So he came out, and I was actually gob smacked at how much information he actually - the time of the funeral, did I want flowers? Did I want a church? What sort of service did I want? I picked the music, and I picked the service. What to wear? Which was quite humorous, working out what I'm going to wear in the coffin. Hopefully I'll look good [laughs]. But also it takes the pressure off my immediate family. And because, because of the music I've picked, nobody else would have picked. Everybody that I've spoken to have said, 'Well, thank God you're arranging it, because I would have picked Cliff [Richard].' And I'm not having Cliff [laughs].

Why? [laughs]

Because there are two more songs are more important to, and I couldn't pick any one Cliff song but, and it would probably be 'Miss You Nights' for the sake of it, and that's not really what I want. So, well, I did want, for a laugh, 'The Wicked Witch is Dead' from 'The Wizard of Oz' [laughs], and then the tape would stop and somebody would say, 'Ooh sorry - wrong tape.' But I don't think that would go down very well [laughs].

[laughs] I heard about somebody else having that for a funeral recently, actually, for their mother-in-law I think [laughs].

But it does take off the pressure. And I've only organised one car, for my children. And I hadn't realised that that would save a lot of arguments. Because apparently there's family members who think they should be in a car, and then you have everybody, before you know where you are you've got everybody wanting one. So I've just specified one car, where I would like people to go afterwards for something to eat. So that's all made, the choice is made. And then the time of the funeral, to allow the family to travel up. And one of the things I hadn't realised was that to register a death you've got to be 18. So in the event of me dying before my children reached 18, I had to make sure I nominated another person to do that. And that was a detail I wasn't aware of. So I mean, my son is 18 now, but he wasn't when I made it. So then I had to broach the subject with friends, 'Would you mind registering my death?' [laughs]. And obviously a few of them said, 'Oh, no, no, I couldn't do that.' And one friend said she would. She didn't want to, but she would. So then I could put her name down. And I've got copies of that with other friends, so that if anything happened that's all done, and hopefully everybody'll just have a good time and not have to worry about things going wrong on us. That's the way I want it, so.

 

She made a joke about dying and her friend was so upset she didn't contact her for three weeks.

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Have any of your friends found it difficult to cope and so on?

Yes. A lot. And all in different ways. I mean, I've got a friend that comes and does the PEG. She is so humorous and she just takes the mickey full stop. But I also know that if I have a bad day or she has a bad day trying to do the PEG, she has gone home and broke down. But I don't see it. Other, my other friend was fine until over a year ago Cliff Richard tickets went on sale. And the concert was last week. So of course I rang up and said, 'Oh, I've got my tickets for Cliff.' 'When are you going?' 'Next November.' Well, this was October last year. I said, 'It's all right. If he dies, I'll get my money back. He's older than me. So I mean, I'm not going to die because I'll, I can't afford enough to lose this money.' And I hadn't realised that I hadn't heard from her for about three weeks. And I kept ringing up and she wasn't in. And I knew that, because we'd been friends for thirty years, that she wouldn't not answer my calls. And when I eventually got hold of her, she'd actually broke down. It had never occurred to her until I bought those tickets so long in advance that I might not be here. And she said it wasn't me, it was her problem. Up until then point, that point the thought that I might not be here hadn't actually entered her head. And she needed that time out, to get her head round that, and come back and say, 'Look, I'm sorry, but I couldn't...' So I said, 'Well, the annoying thing is I'm sat here wondering what I've done to you, not realising that something as, a joke like that had had that knock-on effect.' And yet normally she's the one that picks me up.

Do you think it was worse because it was a joke? Did that...?

I think so.

Yeah.

And I think it had obviously never occurred to her before. And I often sometimes just don't think, but it was just a genuine thing, 'Well, Cliff's 67. If he drops dead tomorrow I'll get my money back.' And kind of it's just something, 'Well, actually Liz might not be here, never mind Cliff.'

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