Well, as far as food is concerned, they were concerned about me losing weight at the hospital, because my weight went down from 9 stone to about 8 stone and it seemed to have a downward pattern on the graph. So they arranged for me to see a dietician, who came out to the house. And she went through everything we were supposed to be eating. Told me to eat lots of butter and roast vegetables in oil and eat as much fat and carbohydrates as possible, which is the opposite message from what you’re getting everywhere else. And she also recommended some Fortijuice sort of things, which are quite pleasant actually. It’s a juice-flavoured drink, which I find quite nice. I did have a go at another one, which was a sort of milky drink, and it was quite foul. So I wouldn’t recommend that. But the juices aren’t too bad and I’ve been having those. And over the summer I’ve been eating a lot of strawberries and cream and things like that. And I have put some weight on.

They haven’t actually weighed me at the hospital recently because they can’t get me on to the weighing chair, because they didn’t have a hoist. But I have found that I’ve put a bit of weight on round my bum, which is not what I would like really, but it makes sitting a lot more comfortable. And when I got very thin I was noticing that sitting on any kind of hard seat was getting uncomfortable. And I didn’t want to get bedsores or pressure sores or whatever they’re called. So I’m quite pleased I’ve got a bit of weight round my bottom now. But I don’t really want to put too much more on because my husband still lifts me to transfer. He can’t be bothered to wait while I transfer on a board. He’d much prefer to get things over quickly and lift. And I don’t want to get any heavier, or he’ll get a bad back and then we shall both be in real trouble. So I have changed my diet to a certain extent.

I do try to keep plenty of fruit and vegetables going in, because I don’t want to get constipated. And I have some fibre stuff which I have mixed in with my Ovaltine every night. So I do have to sort of work things like that. Most of the time I don’t feel hungry, and looking at a great big plate of dinner is not very exciting. It’s quite daunting in a way, and I just have to keep on poking it in. You just get your spoon and you listen to something on the radio and just keep doling it into your mouth and swallowing it and hoping that you’re doing the right thing. If I had to decide when I was full, I’d decide I was full after three mouthfuls. That’s about as soon as I start to think, ‘Oh, I don’t want any more. So you just have to keep on working at it really, that’s the thing. I found tiramisu was very easy. That slips down very nicely. So when Sainsbury’s had a special offer on tiramisu in the summer we got large amounts of it. And I did find that was one thing that slipped down easily, and was nice. But generally, because things don’t taste very nice, especially savoury things, you just don’t feel inclined to go on eating them at all. I used to love smoked mackerel, but it doesn’t taste like smoked mackerel any more, it just tastes like something really, really salty and it just doesn’t have the roundness of the flavour. So things just go off the menu, really.

Do you go out to eat at any time?

No, because it’s difficult to eat in public. I will occasionally go and eat something that I can eat with my fingers or perhaps something that I can spoon up. But I don’t take my arm support when I go out, so it’s got to be something I can manage fairly easily without the arm support. And as time goes on I feel less and less inclined to go and eat in public, because I don’t want to have people watching me and wondering what I’m up to. So I think that’s something I would avoid in the future

I think one thing that, another thing that I found interesting, looking back on it now, is my approach to eating. And since my arms have become weak and I can no longer feed myself – I can’t get a, a fork to my mouth – I thought, I remember saying to myself, and to my family six months ago, ‘Come on, let’s go out to a restaurant. You know, I want to, you know, enjoy it while I still can, because I’m not going to be able to feed myself soon. And then I’ll feel much more self-conscious about eating out, and I won’t want to. It appears that that hasn’t been the case [laughs] and that the food has taken over. And even though I can’t feed myself, I’m still quite happy to go out to restaurants. It doesn’t, and it doesn’t bother me. Whereas I thought it would before, and I thought that that was something that I was going to have to opt out of. And that’s just not the case. And so sometimes things aren’t always as bad as you expect them to be, and other desires take over. [brief mobile phone interference] So I enjoy food too much to be worried about what other people are thinking or whether they’re looking at me. It doesn’t occur to me now. But that was something that I had to sort of just get over. Yeah, so that was, that’s interesting, sort of looking back on that. And the same with being in a wheelchair – I know that my, my, my husband notices people looking at me more than I do. I’m able to kind of, well, look at, look in windows and I’m too busy shopping to be looking at other people. But my husband feels that. That doesn’t stop him wanting to do anything, but – and sometimes it makes him angry – but he’s kind of got past that as well. And it’s just human curiosity. So I tend not to, I guess subconsciously I’m just not looking at other people, or their faces. Because it doesn’t help me.

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 causeof 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.

Maryse’So gradually I’ve not been able to sleep in bed because my nose for some reason gets blocked. My, the mucus membrane of my mouth dries up and normally one can swallow. But it’s too difficult to swallow. And it’s not so much the swallowing but the back of nasopharynx is also inactive.

Your thyroid?

Daughter’Nasopharynx.

Right. Is there anything that you do to help that? Anything that you can do?

Maryse’Yes, it will be later’ There might be some help with sucking the saliva. So because of that, it’s, it is very frightening not to be able to breathe in the night. In a, in the recliner, what is it called?

Daughter’The recliner chair. We tried several, didn’t we, before we got one that we found was okay.

And that helps with your throat, with the swallowing?

Maryse’The carers and I have gradually learnt how to position me. It’s only in the last week that it is getting better. In the last week, example, I go to bed at 11.30. I need care between 2 and 3 and last night I slept from 3 until half past eight.

Daughter’Lie in.

Maryse’I didn’t get up. I think the [inaudible] makes me a bit drowsy. So what are the changes? I was taken to lunch on Wednesday and it was tender fillet of steak, really perfect and my friend cut it for me. And I realized that the chewing is fine, the swallowing is fine in terms of food but my tongue has, is going or partly. It’s not moving as it should.

When you’re given bad news, it doesn’t mean your life has ended. It’s the beginning of a new adventure. Make motor neurone disease live with you, and not the other way round. I don’t give in to it. If I feel my hands or any of my limbs stiffening or cramping up, you see people all paralysed and their hands, what am I going to do it that way, I’ll do it that way. I force my body to move again and give my hands simple exercises. I had to go on to a Nippy for my breathing overnight some time ago.

I didn’t realise how bad my lung functions had gone until I went on to it. I do do simple breathing exercises a couple of times a day. Nothing too strenuous. I generally lean forward on to a table or if I’m in my wheelchair, on the arms in that position and I do up to a maximum of ten deep inhalations each session. But don’t overdo any exercise because it makes you tired and when you’re tired you feel worse. Keep the exercises simple but regular.

At the beginning I was less knowledgeable, but as I was going into this condition and knowing better what I would be needing, of course they always told me, ‘If you see anything that you would need, just let us know. So at the beginning they were, pre-empting, but they always let, left the door open to me to suggest. And that’s, that’s why in this flat you don’t see too many equipments. It’s not heavily equipped with, with aids etc. I just have what I need, actually, because I said right at the beginning that I want to continue to fight. I want to continue to use my body as much as I can. And if I reach a limit where I can’t use it, okay, I will make an adaptation. But until that point, I will push it. And that’s the case with my breathing. I don’t want to have any assistance with that. I still continue to use my lungs. And actually I go for musical therapy twice, twice a month. And in musical therapy we can play music with xylophones with my hands. It’s an exercise which is seemingly done without thinking. And the other side, I sing at the same time, and singing helps my breathing and helps my lungs working in a, in a seemingly fashion as well.

Have you had breathing problems, apart from the time when you were admitted to hospital?

It, at the hospital it was because of that problem, of the ulcers.

Yeah.

But afterwards, at the point of time, it was about six months ago, seven months ago, I started to have, let’s say, a diet which was not enough and I wasn’t sleeping enough etc. I got tired. And it was affecting my, my breathing capability. And then at that point – and now I’m feeling much better because I’ve changed this situation. And my GP helped me by medication as well. And now I’m really much better and the breathing is, is working fine.

What medication did you have for that?

When, when – the medication was mainly because I had some bowels problem, because at that time not having a proper diet I started to have really problems and diarrhoea etc. And so I went two weeks at the hospital at the end, at this Christmas, and because I was anaemic. And at that time then they started to give me some steroids etc. And the steroids make a big difference. And I’m now, I’ve tapered it down now, I’m getting it down, out of it. But it seems that I have recovered, recovered quite well. All the blood tests now are showing quite a good recovery and good thing, which has taught me a lesson. Because it’s always the same problem, it’s one thing bringing the other one. At work I have nobody to help me to go to the loo. And then because I’m not able to transfer from this, the other chair I have to the, to the toilet – which there I have a, a riser as well which has been bought by my company – then I tend to say, ‘Okay’ to refrain myself going there, and of course refrain myself to keep my dignity. I don’t eat at noon, I don’t drink. And so I start to get a problem. So from one situation I’ve brought another problem. And this is where I taught my, learned my lesson, because I would cope with MND, but having a problem linked with all the bowel etc, I don’t like it. It’s, it’s worse. So I said, ‘I can avoid that’ so.

It’s not affecting my swallowing and my eating and drinking, fortunately. My, I did have a lung capacity test done about three or four months ago – yeah, about four months ago, actually, before I flew, to ascertain that I was going to be okay to fly. And they measured my lung capacity at 40 per cent. Although my oximetry is fine, so the lungs are working fine and my, my blood is fully oxygenated, my capacity is less. So I can’t cough or choke. I’m quite pathetic. Shouting, I can’t really do. And I do find that when I’m talking I will sometimes have to pause and, and sort of take breaths within a sentence that I wouldn’t normally have to. I don’t really get breathless, though. I get the occasional day, maybe if I’m a bit stressed or whether, if it’s particularly humid or close, then I might struggle to feel like I’m not getting a full lungful. And something that I’ve found that helps me quite a lot with that is relaxation and belly-breathing. And also aromatherapy oils, like frankincense and lavender. Just inhaling on those is really, it feels like it opens up my lungs and it stops me panicking about feeling like I can’t get enough breath. And so also now that I’ve had that a few times and I know what causes it, I’m able to relax out of it much more quickly. Mm.

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.

And we were constantly looking for that typical motor neurone breathing difficulty and it wasn’t there, except when she’d start thinking about it, and she’d have what we came to term a panic attack. And she started to in particular associate that with going to the loo, and so when she was sitting on the loo she started getting breathing difficulties, for no apparent reason. So we did what we could in terms of making her more comfortable when she was sitting on the loo. We had a commode obviously as well, and she preferred the commode, although it was more difficult for everybody else concerned. She preferred the commode and towards the end we were using the commode almost exclusively.

But it was on the loo that she was having these panic attacks, and she could calm down from them. She could have them on other occasions but again with concentrated breathing exercises she would come down from the panic. Now whether that was just the brain compensating for something that was happening anyway in her, I mean, I’m not a medical person so I don’t know quite exactly how it works, but I know that there are some parts of the brain that control our involuntary muscular activities and there are some parts that help to control them if the involuntary systems don’t seem to work.