Mike - Interview 23

Age at interview: 54

Age at diagnosis: 52

Brief Outline: Mike was diagnosed with bulbar onset MND 2 years ago in 2005. He is now unable to speak, so was interviewed through his wife Gill. He uses a whiteboard and Lightwriter to communicate. He has a PEG (Percutaneous Endoscopic Gastrostomy).

Background: Mike (aged 54) and Gill (aged 49) are a married couple with 3 adult children. Mike retired as a Fire Master. Gill is a management consultant. Ethnic background/nationality' White British.

More about me...

(Mike's speech has been affected. He tells his story through his wife, Gill)

Mike was a fire brigade Fire Master. He first noticed something was wrong two and a half years ago in 2004, when he thought his speech was becoming slurred. At first other people didn't notice, but one day when he was visiting a stand at a conference, someone accused him of being drunk. The GP referred him to a neurologist who arranged for him to be seen quickly for a brain scan. At first Mike was tested for multiple sclerosis, a brain tumour or a stroke.When those conditions were excluded, he was told it might be myasthenia gravis or motor neurone disease. When a course of drugs failed to have any effect, myasthenia gravis was also ruled out and MND was confirmed. They immediately told all the family and two of Mike's colleagues who knew he was having tests. Mike and Gill's approach with the family has always been to be completely open and tell them everything as they heard it, but they advised them not to rely on the internet for information, as MND affects individuals in such different ways.

Their specialist team have been fantastic and come regularly to their house. Gill helps co-ordinate care and ensure good communication between the professionals involved. Both Mike's sons are sports fitness coaches and have worked on exercise plans for him with his physio. There have been some problems when dealing with non-specialist staff who do not know enough about motor neurone disease. When Mike had breathing problems one night they were sent to a local cottage hospital where the nurse on duty wanted to prescribe antibiotics, assuming it was an infection. They insisted on seeing a doctor who sent them to a hospital with a neurology department. Even there, they felt staff did not listen or take his needs into account, for example telling Gill she could not come into the consulting room with him to help explain what he was saying.

Mike decided to have a PEG tube (Percutaneous Endoscopic Gastrostomy) about a year ago. They were told it would be a simple procedure, but because Mike had great difficulty swallowing the tube they had to stop and arrange for a general anaesthetic instead. Although it was unpleasant at the time, and he has had various infections, he now relies on it completely for all food, liquid and medication. The feeds are delivered every month, and the company even arranged to deliver some direct to Portugal when they went on holiday. Mike and Gill still go out to restaurants and invite people to dinner, even though Mike can't eat. They feel it is vital to maintain social activities. They remind people to involve Mike in conversation and explain to them that if he becomes emotional it is part of having MND. This emotional lability is something Mike finds hard.

He prefers to use a whiteboard to take part in conversation, but also uses a Lightwriter. He uses the internet and email a lot, to chat and to find out the latest information about MND. Mike and Gill say it has been hard adjusting, but they deal with it by discussing everything together and keeping a full diary. They are determined not to let it rule everything; as Gill says, it's Mike who happens to have motor neurone disease, not motor neurone disease which has Mike.

They want to be as independent as possible. Mike has a portable pump for his PEG so they can take...

But what I was just going to say is that we took the decision that rather than rely on nurses to come in and do feeds and all of that stuff, we've all along have said we'd prefer to be trained how to do these things. Because we wanted to sustain our own independence, so that we could still carry on doing the things that we want to do. So like now, for example, Mike has a portable pump, because he's fed by a pump once a day. And it's a portable pump [Mike writing on whiteboard] and we just, we link him up to it and he gets fed, and, you know, we still go out and go to a restaurant or, you know, go and see friends and whatever. It means that we've got independence. Sorry? Jug? Your jug for your other feeds, is that what you're talking about? Yeah. His, his feeding regime is that twice a day, morning and lunchtime, he's fed by a syringe, a big syringe and he just, he decants the feed into a jug and feeds it in. So he does that twice a day. And then in the evening he's pump-fed for about two, two and a half hours, in the evening.

He was aware his speech was becoming slurred before anyone else noticed, until one day at work...

OK. It was in probably June 2004. Mike was coming home from work and, and asking whether I'd noticed that he was slurring his speech at all. And I hadn't, I didn't, didn't see anything. And he questioned a couple of guys at work and they said the same thing. And then July, the following month, in July we went on holiday and we went down to have a drink after, after dinner. And I noticed that when we were talking to some people that we'd met, one of the guys was saying, was, couldn't understand what Mike was saying. And that was really the first time I think that I'd really thought that maybe there was something wrong. But we didn't really think anything about it, you know, we just - I thought maybe he was tired or, or whatever. In the September, I went away to work and Mike went over to a conference in Manchester. And on the, when I get, got back from working, Mike picked me up at the airport and he said that he'd had a terrible day. He said that he'd been on the stand at the conference and somebody had accused him of being drunk. So that was the, that was the, the, the trigger, really, to say, 'Right, there is something here.' Because this was at 9 o'clock in the morning and there's no way that he would be drunk at 9 o'clock in the morning.

They were offered stem cell treatment by a private clinic which has since closed. They'd do...

Yeah. His, Mike's biggest desire is to get involved in stem cell treatment. But I heard, I was stood in the chemist yesterday, actually, and there was, on the radio they were talking about it. But what we've been told, it's very much still at clinical trial - not clinical trial, it's very much in the lab. It's not being applied to human beings, other than in places where it's not, it's unethical, really, you know, where - we were approached by a company in Belgium to ask whether we wanted to go over to Belgium, Holland, wasn't it? No, it was Holland, because [name] in Holland. Sorry, it was Holland. We were approached. We'd gone onto a website to have a look - we'd seen an article in a local newspaper - we'd gone onto the website to have a look at this company and I, it was my fault, I'd forgotten that I'd left our stuff on the bottom of this email, you see, or whatever. Anyway they, they rang one day and rang to say that could we go, get a ferry and go over to Bel-, to Holland? And they were doing these, they'd got a cure for MND and all this. Well, I knew, we both knew, really, but it didn't stop Mike's hopes going [gestures upwards], you know, like that. Anyway Mike's cousin, who lives in Holland, he did a bit of searching around, and to cut a long story short we found out that they were just really a bunch of cowboys, and they were taking I think it was '18,000 off people to go and have this treatment. And of course it was false.

Was that the place that's been closed down recently?

Yes, yeah, the one in Holland, yeah.

Yeah.

We were approached.

I think it was on 'You and Yours' or one of those Radio 4 programmes.

That's right, yeah, it was. It was closed down. Because [name], Mike's cousin, said to us, didn't he? 'Just don't even go there.' The horrible thing is, and we've discussed it, this at length with a lot of people, the horrible thing is that when you've got this disease you'll search for anything. You'll search everywhere and, you know, and people are, are paying huge amounts of money for stuff that isn't going to work. Now we talked to the professor down at [London hospital] last November and we had this discussion with him, and obviously we were desperate to get some sort of cure or whatever. And he convinced us that, you know, not even to go there with it. You know, he said, 'If anything, anybody's going to know anything about cures for motor neurone, I'll know about it' because he's on like the world stage with MND. And of course with us going to [London hospital], Mike was registered with him. So anything that goes on at [London hospital], we get to know about anyway. So that was good for us to go down there. So that, that was that, wasn't it? But we've heard other tales. We heard a tale, Mike's MND nurse said she'd just heard a tale of a woman who'd actually gone out somewhere, to the Caribbean somewhere and had snake venom injected into her, and paid thirty-odd thousand pound for the privilege, apparently. So there's, it's not hundreds of pounds, it's thousands of pounds.

And Mike knows that, you know, we'd go and live in a tent - if we knew there was a cure for motor neurone that was buyable, we would live in a tent, we'd sell everything that we've got and live in a tent. But you've got to be sensible about things. And we have to, you know, things do pop up and you think, 'Oh that looks interesting' but we have to, we've agreed together, we've discussed it, haven't we? We've, we've agreed that we will be guided by the likes of the guy in London and Mike's neurologist, who we got on very, very well with, and they operate very closely together. 

They wonder if exposure to chemicals in farming or Mike's days as a firefighter might have caused...

Interviewer has asked what Mike thinks might have caused his MND

Chemicals. Mike's been in the fire service since he was 16 years old and he worked in one of the biggest brigades in the, in the country, where lots and lots of chemical incidents and stuff that went on. And of course they went through them. And at the time that he was in the brigade there wasn't the sort of protection, protective equipment and clothing and stuff that there is today. You know, we're talking way back to 19-, was it 60s, when you first started? [Mike writing on whiteboard] And as time's gone on he's had more and more chemical incidents. And so that's been, some research that we read, there's been some evidence that chemical - 1970, was it? - some chemical, chemicals it's been suggested might have been involved. The other thing that - and this is more from my end - is that when Mike was in [county] he was in charge of the foot-and-mouth problem that they had in 2001. You were in charge of the health and safety side of it, weren't you? And of course being involved with that he was on farms with affected animals. And, and that was an, a horrendous nightmare. And we lived there. It was shocking. And he was very heavily involved in that. And we lived on a farm, and there's been some suggestion from Australia that, there's been, there's high evidence of people who've lived on, live on farms have got MND. So we had double that, if you think about it. The chemicals from the fires, the living on a farm for, for four years, was it? About four years, and then the foot-and-mouth as well. That cocktail of stuff going on, we can't help but think that maybe there's some trigger that's occurred as a result of those, those things. [Mike writing on whiteboard]. But of course they don't know, do they? They don't know. But I can't get the, the foot-and-mouth thing out of my head. Because it was, people who weren't there won't realise how bad it was. It was shocking, absolutely shocking. You didn't go to the farms? On our farm, though, we had to dip our feet in the [laughs], every time you went up the lane you had to get out the car and dip your feet in the disinfectant. And so I don't know, it just seems strange. And of course there's, there's been some suggestion that, some MND patients are saying that, they're questioning whether they've got Lyme's Disease or MND. And there may be some misdiagnosis. [Mike writing on whiteboard]. And they say that Lyme's Disease apparently is caused by tics, is it?, in, from foreign travel. 

And of course Mike's worked in Botswana, he's worked in Sri Lanka, he's worked in America. So that's a, another thing. But we asked the neurologist about Lyme's Disease two weeks ago and he said, 'No. Some of the symptoms are not the same.'

Gill's first thought was how she was going to tell the family. Mike was calmer than she was. It...

And I, I remember the first thing I thought was, 'What am I going to tell his mum?' Because everybody had been waiting for us to tell them, you know, that, whether he'd got motor neurone or... Of course people don't live, our, our family don't live close to us. They live down south. And, you know, of course it's, everybody wasn't waiting for us to come back - they were waiting for a phone call. And then I felt, you feel guilty that you've got to make a phone call to his mother, to say that her son's got MND, do you know what I mean? So there was all that emotional stuff going on. And that's how I felt. But I do remember when Mike, when his neurologist told him, Mike just went, 'Hey.' [shrugs] And his neurologist said, 'Well, you're taking it very calmly.' And he said, 'Nothing I can do.' So we came away from there, didn't we? And we actually went to the Botanical Gardens in [city] and just went for a coffee, didn't we? To try and take stock, really, you know, of - because we were thinking, 'How do we tell everybody now?' Because everybody was waiting for us to ring them, you know, all our friends and family, everybody was waiting.

And the first thing he wanted to do - and it was his decision, obviously, how he wanted to start that process - we went back, he went back to fire service headquarters, to tell his colleagues. [Mike writing on whiteboard]. There were only two people at that time who were privy to the knowledge that he was having some tests. Yeah, I'll mention that in a minute. There was only two people, other people in the brigade who knew that he was having some tests. Everybody knew that he, there was something wrong, but we decided not to tell everybody what was wrong, because it could have been something that was just treatable, you know. That's, we decided not to set the hare running, if you like, you know, to tell people. What Mike's just written there is that at that time anyhow he could still speak, he was speaking. And he was, he was quite clear, you know, with the, with the speech. So you went and told the two at headquarters, didn't you? So then, and then it was a case of ringing his mum, ringing his two boys, ringing my son, ringing the family, and whatever. We rang them initially, and then that weekend we went down, didn't we, to see them as well. Because we were aware that, you know, the phone call, all sorts of stuff goes on in people's minds, doesn't it, if they've not seen. So we then dashed across to [city], didn't we, to see Mike's eldest son. And then we went down to [city] to see his youngest son. And then went to see his mum and family and just really met with them that weekend. And that was it really. There was nothing else we could do, you know. It was the diagnosis was made, and that was it.

How did they all take the news?

Everybody was very, very upset, really upset, because everybody was aware of what motor neurone was. We didn't realise that people knew what motor neurone was. And we, we found, Mike's sister for example, she, she knew somebody who'd had it as well. So she was aware of that. So everybody was really, really shocked and very upset about it.

Who actually made the phone call? Was that you, Mike, or did you?

I made the phone call. Yeah, I made the phone calls.

It sounds like you were kind of so busy thinking about telling other people that you, you weren't quite taking stock of what it meant for yourselves. Is that right?

Absolutely, I think that's what we did. We, you know, I think your natural instinct is to, to care for your children and, and make sure that, you know, they're communicated with properly and, you know, supported. And, and our first reaction was for the boys, really, you know, that we need to make sure that they’re with it, you know, they, they under-, understand. We were, to be honest we didn’t understand what was going on, because we didn’t know what motor neurone was, really. So we were in a position where it was just a massive shock factor, and trying to support people when you don’t really know yourself what’s going on. So we just talked to them and, and just said, you know, that, “As we find things out, we’ll discuss it with you.” You know, and we, we asked them how much they wanted to know. Did they want to be fully informed of everything? And both the boys, all the boys said, “Yes”, didn’t they? The three of them said yes, they wanted to know everything. They didn’t want us to feel that we needed to protect them in any way. They wanted full involvement. And that’s what’s happened, you know. Anything that happens, they get told, you know. And they’re, whilst it’s upsetting, they, they want to know that. So that’s what we do.
 

He had problems with the PEG procedure because he couldn't swallow the endoscopic tube and he...

The other experience that we had was when he had his PEG tube fitted last December. The decision was taken that he would, he would have it done. Mike made that decision himself, to have it done at that time, and it was set up pretty quickly really for him to go in to get it done. And the words were -and the speech and language therapist would, would support me on this one - she has changed the way that she speaks to people now as a result of our experience, because she said to us, didn't she, 'It's nothing. It's just a quick process, procedure. You'll be in and out. Don't worry about it. No problem, you'll be fine. They'll take you in the night before' - which they did - 'and then they'll ambulance you across to the main hospital, and everything will be fine.' And that was great. So we were pretty confident, weren't we, that that was okay. So I went with Mike down to the waiting area before they wheeled him in to do the procedure. And of course Mike kept writing on his board, 'Remember to tell them that I've got motor neurone.' And I said, 'I have told them. I have.' And then they came and explained what they were, what was going to happen. They were going to put this tube, you know, down and out through his stomach. Fine. And Mike kept saying, 'They do know I've got motor neurone? And they do know that it's affected all this area?' [indicating face and mouth]. I said, 'I've told them.' Anyway the consultant came up to me and he said, 'We're going to take him in now.' And I said, 'That's fine.' And he was fine about it.

Of course they got him in, and they couldn't get it down, because all the muscles, they don't know what was going on inside. He couldn't take it because the muscles couldn't, he couldn't swallow it, you see, he couldn't react to this tube going down. And it, they just couldn't get it down at all. And of course they have a plastic piece that they put in the mouth to put the tube and the camera, apparently, down the throat. This is what we were told.

And it was on his lip. Well of course Mike can't speak. And what they did when they - they tried about three or four times to get it down. And I could hear what was going on in the room, and I actually thought that they were killing him. He was in such - you couldn't, you couldn't hear him shouting because he can't speak, but you could hear him moaning. And I wondered what the hell was going on. And, and all of a sudden it went really quiet. And the consultant came out, and I remember looking at his face thinking, 'They've killed him' [laughs]. And I said, 'What's gone on?' He said, 'We've got a big, we've got a problem.' I said, 'What's, what's the problem? What's happened?' And he said, 'He just can't take the tube. He won't, I can't get it to go down. And he's fighting it,' because he couldn't get it down, you know, and that. And when he came out of - they brought him out of the ward, out of that room, back onto the, into the waiting area to decide what they were going to do next. And what they'd done is rip the thing off his lip, you see. It was stuck on his lip and Mike couldn't tell them. So they ripped it off. And of course his mouth was out here, and they hadn't got this tube down, you see.

And then the guy that was doing it said, 'The other problem I've got,' he said, 'he needs to have it done.' I said, 'Well, obviously.' He said, 'It's Friday afternoon.' He said, 'And I don't know whether I'm going to be able to get an anaesthetist. He's going to have to go down to theatre to have it put in under anaesthetic, and I don't think I can get an anaesthetist on a Friday afternoon. So you might have to, you'll probably have to come back Monday.' So of course Mike's writing on his board, 'I want it done. I want it done.' Because he'd obviously gone through that process himself of, you know, in confirming with himself that he needed to have it done. And he didn’t want to come away without having it done. And the guy said, “Well, I’ll do my best. I’m going to try and ring round and see if I can call on an anaesthetist.” And we waited and waited, didn’t we? Anyway he came back around about 2 o’clock and he said, “I’ve managed to get somebody to come from [city] who is prepared to, to come across this afternoon.” So they took Mike to theatre that afternoon, and they managed to get it into him.

Using sites like BUILD-UK and PatientsLikeMe has been a great way to communicate and share...

Yeah, I mean, the Internet anyway is, is useful, you know, and being able to use things like Messenger. Because, you know, obviously with Mike not being able to speak now, his communication with, with family and friends can be done via that, you know, so he can have live chats with, with people. Which we've found invaluable, haven't we? And wanting to find out information about motor neurone and what's around and what research is going on, we came across the BUILD UK website, which we found very useful. However, there's a new website, a newish website, called PatientsLikeMe, which is brilliant. Because in essence what you do is you put your profile up and in it you record the treatments, the symptoms, the treatments, how long you've had it, and all that sort of stuff. And other patients obviously do the same thing. So it gives you the opportunity to, to find out other patients that are in the same, probably the same onset as you are, i.e. bulbar, and the same symptoms using different drugs or different supplements and whatever. And it gives you the opportunity to actually communicate with them about what they're using and how useful that is. So that's been invaluable as well, you know.

They try to live a normal life. It helps to plan ahead, but you have to deal with challenges as...

How we'll fare next year, we, we don't know. I mean obviously we're dictated to some degree by the disease. But wherever possible we're trying to live as normal life, you know. I think I said to you before, Louise, that it's Mike Bitcon, Mike Bitcon who happens to have motor neurone disease. You know, it's not motor neurone disease who has Mike Bitcon. It's Mike Bitcon who happens to have it. And that's the way that we look at it, isn't it?

And we just try to keep it in a box somewhere. And all of a sudden, it's a bit like a jack-in-the-box. It pops its head up and then you have to deal with it, and it goes back down again. And the horrible thing with motor neurone is that sometimes it's not one jack, one jack that's coming out the box - there's ten of them. And I used the analogy just recently with somebody that it's like at the fairground where you've got all these heads coming up and you've got a mallet and you have to go bang, bang, bang. Because you can't predict what and when things are going to happen. So whilst I say that we are proactive and we do try and get things in place before anything happens, sometimes it's taken out of your power completely, and that's when you're at the mercy of the medical people. And that's where we've had one or two experiences that have not been so good. So on the whole in terms of managing it, we've got a very good team, managed on a day-to-day basis. It's only when it comes outside of the norm, and you're going into a strange environment that you feel a bit vulnerable with it. And you have to sort of like kick in and be very, very assertive about things.

He has a Lightwriter but prefers white boards. He uses texting and the internet. His sons ring up...

Yeah. Communication aids. Mike's just written there that he likes the whiteboards, which is these things here, and you can't get these in the UK, these whiteboards. Just show, show Louise [researcher] your whiteboard.

Ok, so a particular - actually if you could move it into the camera and hold it - yeah, like that.

[Mike shows whiteboard]

Is that OK?

Great, yeah. 

With the dry marker pens, so that you can actually just write down what he wants to write down and then rub it off. And you can't get them in the UK. But I have actually given the information to the Scottish MND Association. They're going to try and get somebody in the, in the States to, to get a contact to get them for people over here.

So it's the size, it's nice and...

Well, he has a one that's about that big as well [indicates hand-sized]. So that if he goes to the bank it's there in his hand. So it's more discreet than something like that. That's more of a conversation, conversation board. But we have actually given some to people, because our friend in the, in the States, when I - he sent some over initially and they do wear out eventually, you know, and that. And I emailed him and said, 'Can you get me a contact for, for these boards?' And I think within a few days a delivery person came. And he'd actually bought the shop out [laughs]. And this big box came with all these whiteboards. So we've given some, some out to people, you know, where we've known that - like the guy in [town] we gave some to him, didn't we? We've also given some to people like who've had cancer, throat cancer, who've lost the, the ability to speak as well. So when, whenever [name], Mike's speech therapist has been, if she's told us of anybody we've just given her them, you know, and she's taken them out. But the Scottish MND Association are trying to get them now. So he prefers that. But he finds that's the easiest way to communicate. When we're driving, though, obviously if he writes on his board and I'm driving, I can't read what he's, what he's written. So we're, I'm trying to get him into the way of using the Lightwriter, because, you know, he can, he can play that to me while I'm driving. And so we're trying to manage that at the moment, aren't we? I would say that 99 per cent of the time he uses his whiteboard at the moment, than the Lightwriter.

How long have you had the Lightwriter? Is that fairly recent then?

No, right, right from the very beginning [laughs]. Yeah, the minute that [name], the minute his speech therapist came in she, we talked about how, communication. At that time he was still speaking, you see. [Mike writing on whiteboard] And she sort of said, 'Well, it's better to get these things in place beforehand, so that you've got them.' Because there's not infinite resources, you know.

What, what? Sorry. You want to'

You use it, you use your Lightwriter.

Yeah. I was going to say what stops you using it more often? Is it because you have to get it switched on and it takes for ever to get it going, or?

I think it's because it's slower really. [Mike writing on whiteboard]. You know, you, this is more interactive. You know, if I, people who come to see us now, if they see Mike writing they'll hold the conversation for him, or they won't change the subject. We've, that's been a lot of effort, to get people to do that. But we've talked to people and said, you know, 'If you see him writing, try and stop.” Or, you know, and, and I’ll say to Mike, “Say that in a minute.” And I’ll make sure that the conver-, he brings that into a conversation. So it’s more interactive, I think, than the Lightwriter. [pause] And the size of these things as well, they’re easier to take, take into a, into a place where you’re having a conversation. So that’s the...
 
Yes, yes, yes, I can see. I mean, the, the, having something that’s sort of computerised kind of distances you a little bit from the conversation.
 
It’s invaluable in the car though, because for obvious reasons, you know. I mean the, I can’t read what he’s writing, so we, it’s handy for, for that sort of thing.
 
Yeah, so you can actually continue to have a conversation when you’re driving. Yeah, yeah, OK. [Both nod]. Have you had any other communication aids or is that pretty much it, the whiteboard and the Lightwriter?
 
Texting, don’t you? We’ve, with all our friends and family, as, as things have changed we’ve tried to adapt and get people to adapt with us as well, you know. [Mike writing on whiteboard]. So not - obviously Mike now can’t, doesn’t answer the telephone at all, unless he, the only time he answers the telephone if he knows it’s his sons or maybe my sister or whatever, sisters. Because if he sees, if he knows, sees the number, you know, what I’ve said to people is, “Don’t ask him questions. Just tell him what you’ve been doing.” So if his two boys ring up, or my son rings up, they’ll speak to him – in a minute, love - they’ll speak to him and say, “Dad, I’ve been doing x, y, z.” They don’t ask him questions. So they talk to him and tell him what they’ve been doing, and then they come on to me and I tell them, you know, what’s, what’s been happening. So we’ve, I think as I said to you on the phone we’ve become quite a double act, really [laughs]. So people text him as well. Which, he’s still able to use his hands. But that’s a bit fiddly, the texting, you know, with people. But we’ve set him up on Messenger on the computer, so he can have live talk with people. So a lot of our friends have now gone on to Messenger, so that they can have conversations with him on the, on the computer. So he’s, he does that. So, very keen to make sure that, in terms of the social interaction, it’s sustained. Because Mike’s - both of us, but Mike in particular - has always been very very sociable and, and, you know, and enjoyed that side of things. And we believe it’s important for that to be sustained. An example I’ll give you, Mike doesn’t eat or drink at all now, but we still have dinner parties. [Mike writing on whiteboard]. And that might sound a bit cruel, but it isn’t, you know. It, it’s harder for the people that come to eat, because they feel guilty about eating. But it’s just as important that Mike has the social activity going around it. Yeah, I’ll mention about that. So it’s important for that. So we do try to do that. And of course we always try to have it here, because he can wander in and out, like you’ve seen him do today, Louise. He can wander in and out and come and join us and join the conversations. So it works out quite well in that way. And he’s just written that when, at the roadshow [Fire Brigade Road Safety roadshow] last week, every, the whole team that run the roadshow, when they’d finished the three days that they do, they all go out and have this celebratory drink in, in the pub, you know, and that, and go potty really, you know.

A nurse told her she wasn't needed on the ward, but the doctor had to ask her in because he...

Our friend said, 'They've taken him onto the ward, Gill, you know.' And I said, 'Well, I'd better go down.' Because at that time Mike's speech, it was probably only myself, really, who could really understand what he was saying, you know. Because I'm with him all the time, I could still understand. So I went down and the sister was outside of the ward, and I said, 'Excuse me.' I said, 'You don't mind if I just go into the ward, do you?' I said, 'You know, the doctor's with my husband,' I said, 'and he'll not be able to understand what he's saying.' To which she responded, 'He's managing very well, thank you very much.' And then the next minute the doctor came out. He said, 'Mrs Bitcon?' I said, 'Yes.' He said, 'Could you come in? There's something I can't understand what your husband's trying to say.' 

There's a lack of awareness about MND. Their GP learns from them as the experts, but it can be...

Certainly there's a definite lack of awareness of MND with, with health professionals. [Mike writing on whiteboard]. Our GP openly admits, you know, Mike's the first MND patient that she's ever had, and might be the only MND patient that she ever has. So of course they're very much, they learn from what we learn, you know. And we've become almost the experts in MND in our situation. The frustrating thing is that when you do go out of the team - the team that work with us are, are superb, absolutely superb - but when you're taken into an alien environment, if something happens and you've got to go to a different hospital or whatever, it's so frustrating because there's so little knowledge about MND. And as I say to people, the people try to treat him as a normal patient, and he isn't. There's other factors that need to be taken into consideration. So for us there, there needs to be more awareness at the medical level of what actually is going on, you know. And there's some horrendous stories on the websites about how people are treated, how MND patients are treated when they go in. And God forbid, if Mike was ever on his own, I don't know how he'd cope with it. People that are on their own. So there needs to be more, more awareness about MND. It seems to get forgotten. Because it's such a rare disease, it gets forgotten, you know. One observation that I made just recently and I passed comment about it, when we go to the local hospital, the hospital waiting room is full of information about MS. There's not a single piece of literature about MND. Now it could be that Mike's the only patient that goes there with MND, but it doesn't matter. There should be information in that clinic about MND. So you just feel as though nobody's listening really, you know.

Their sex life has not been affected, but they miss talking to each other. It can be challenging...

Don't answer this if you don't want to, but if you're willing to talk about it, what about your physical relationship and how that's changed? But only if you want to talk about it.

Well, medically, he's, you know, he's got a PEG tube, but it's not changed things, has it? You know, it's still just the same really. We're just, well, obviously when he's not well [Mike hugs Gill and gives thumbs up] - you still love me, then, yeah? [laughs] Obviously if he's not well, you know, it does affect it, you know, and that. But generally we know how important it is. We've both been through marriages before and we know what, you know, so communication has always been a big thing for us, and which has been affected. So we try and make sure that we do do things and we, you know, keep together. So I can't say that it's not had an effect. It has. But it tends to be only when, if he's not well, you know, if he's not, if he's going through a period where he's not well. But physically, no, we're - we've only been married anyway two years, haven't we? [laughs]. We've been together for 22 years but we've only been married for two years.

But never mind. You're still in the honeymoon period [laughs].

[Mike winks] I got a wink then, so he approves of that [laughs]. No, no, we're very close, we are very close. And thank God really, in a lot of respects. You know, it's - because it, spending 24 hours a day, 7 days a week with someone, I won't tell you it's not challenging. It is, for both of us, because it's been a massive change to our lives. But we know what we're facing. And we do have times, don't we? We don't, where we just pull apart, you know, and we just walk way from each other. And that's the way that we deal with it. We just walk away. But we never have time, I never have time on my own really. I don't really have much time on my own, and Mike doesn't, you know. My day the other day working was quite, very unusual for me, to spend a day on my own working. And I managed it, I was fine, you know. It was a brilliant day, but it was peppered with all the time in the back of my mind, 'How's he doing?' because he was on his own, you see. And I'm thinking, 'What if he starts to choke? What if he--?' Do you know what I mean? And so the conversation on the way home was, 'I wonder whether it's worth even risking that, you know, that he's on his own?' Even though he managed. I don't know. I'd, I'd never forgive myself if something happened if I wasn't here, do you know what I mean.

At the moment they don't even want to discuss a Living Will (ADRT). They're just trying to manage and...

We do know about Living Wills (ADRT), and about, you know, right to die and all of this sort of stuff. But it's not something that we discuss. It's not something that we feel, I don't think, that we need to discuss. Because we're not even placing ourselves there, you know. At this moment in time, I think the place where we're at is we're just trying to manage and be normal. And we don't want to even go there, do we? We're not - we've done other stuff, you know. We've obviously put wills in place for other stuff, which is natural anyway for people. But the Living Will, no, we've not talked about that, have we?
 

Staff involved in Mike's care work well together, and Gill keeps closely in touch with all of...

Yeah, what we, there are so many, this team that we've got, with all the people that are involved, it's just gotten bigger and bigger. You know, as different things have happened, other people have gotten involved with it. And I suppose our home really has become the hub, really, for people, you know, coming to see him. So we keep very close and very in touch with everybody that's in the team. And for example if, when Mike goes to have this, these tests with the respiratory guy in, in December, I'll immediately then send an email out to everybody to say, you know, 'This is what's happening and, you know, and I'll keep you posted' and whatever. So in between visits if there's anything that's specific that we think they need to know about that, what's going on with Mike, [Mike writing on whiteboard] they get an email or I'll give them a ring, and just keep everybody involved really in terms of what's, what's happening. Yeah. And what Mike's just written here is that they come here and meet here, you know. Like this, just this week we've had the dietitian and the speech and language therapist have come together. And they'll, they sometimes do a joint review, you know, because one impacts on the other, doesn't it? 

And so they come and, come here and do a joint review with him. And we've had times where there's been, the physiotherapist has been here at the same time. So, so whatever, they come together. So, and they do communicate with each other out with, our home, you know. I know that they keep in touch and monitor, you know, what's going on. So they've been very positive, very good, the support that we've had locally for that.