Mike - Interview 23
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...
He was aware his speech was becoming slurred before anyone else noticed, until one day at work...
They were offered stem cell treatment by a private clinic which has since closed. They'd do...
Was that the place that's been closed down recently?
Yes, yeah, the one in Holland, 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...
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 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...
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.
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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...
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?
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.
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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.
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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.