Motor Neurone Disease (MND)

You get angry. You go through the 'why me?' stage, why not anyone else? You get angry, you get annoyed. You think to yourself, 'What have I done that's so bad?' And you're totally illogical. It doesn't, it doesn't hit anyone in particular. It's very indiscriminate the disease, like any other disease, but even though you know that it's illogical to think that way, you do think that way. You know, 'What have I done so wrong?' You go through thinking, 'Was it my lifestyle? Was it food I ate?' But there is no, there's no rhyme nor reason to it. 

And not, not even the experts know why people get MND and they think it might be environmental, they might think there's a genetic factor, but they don't know so. Again the best thing to do, well, from my, in my instance is just to push it to the back of our mind and not think about it. Grieve for the, for the bits that you want to grieve about and then push it to the back and forget about it then. As you say, when it comes to the forefront you get very upset and it's not worth upsetting yourself about. 

Other people I know with MND get very angry and it's the anger that carries them through. Other people research everything that's going on, they need to research everything that, any new medical sciences that are going on and research into MND. I don't bother doing that, I'm too lazy [laugh].

And again I think it takes up far too much of my life. My life's not long enough now to worry about that. It's to concentrate on my family and enjoy myself. And my way of getting through with, as I said some people get angry. Some people get bitter and I, I just make fun [laugh] and joke about it a lot. So that's my way of getting through with my stupid jokes [laugh].
 

Have you ever had any thoughts about what might have caused it in your case?

I don't know. I can't think of any specific thing that you could ally it to. I suppose you could say giving up smoking, maybe, but I wouldn't have thought so. One thing I'm very proud of is when I was told I was dying I didn't go back to smoking. I've kept a clean sheet. And my nurse at our practice, who was my conscience when I gave up smoking - I did it through her, and the patches and things - holds me up as a glowing example. But I gave up smoking because everybody needs a reason, and my reason for giving up smoking wasn't health, or my health, it was the health of my grandchildren. And I promised my daughters that on no way I would ever smoke in front of them while they were pregnant or my grandchildren. So I gave up when I knew they were pregnant. And I haven't had a cigarette since. And that was the 3rd of September 2004. So two years.

Engraved on your memory.

Two years in now [laughs]. Well, it is, it's a big thing. I smoked forty a day and I'd smoked since I was 10 years old in reality. So, you know, fifty years of smoking pretty much. But I do feel better for it [laughs]. But, yeah, that's the only thing. No, I don't, I don't think there was, you know, I wouldn't say there was anything that I would say was the cause of it. There's nothing there. I think everybody tries to find something and invent something. And in, part of the discussions with my specialist was that, you know, 'You might think, you know, this caused it or that's caused, but we don't know, you know, we just don't know. We don't know whether it's hereditary.' Footballers predominant in motor neurone, a lot of footballers are affected by it. And yet it can affect anybody, you know. I think the nicest thing that was said was that, 'It's not something you've done. You haven't done anything to cause this.' If I'd have got cancer then I could have said, 'Yeah, well, it's my smoking, you know. I deserve it, you know. I shouldn't have smoked all them fags, thrown all that money away in smoke. I jolly well deserve it.' But you can't, because you don't know, you know. You haven't done anything to deserve it. And it's no use turning round and saying, 'God, what have I done to deserve this?' or anything else. You've got it. 

I think one of the things that is a strength to me, and has been throughout my life, is that I have had the ability to say, when I have a problem, 'Can I do something about it? Yes. Not a problem then. I can cure it. I can go out and do something positive to get rid of it or diminish it. Can I do something about it? No. Well, why worry? you know. It's not going to get me anywhere.' And I've lived my life with that belief. It's very difficult [laughs] not to worry, but I've actually lived it with that. And with motor neurone, 'Can I do something about it? Yes, I can. I can go and be part of the trials. I can do this. I can do positive things. I can raise money. You know, I have lots of skills I can use to help motor neurone disease, and, and be positive about it. Can I do anything about curing it? No.' You know.
 

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.'

Do you have any thoughts yourself about what's caused it, or what has caused it locally with these other people that you know?

I don't know. Well, I know there's four ladies and a man in this area. But there's another cluster in another village nearby. At first you think - I mean three of us going to the same hairdressers, you think, 'I wonder' - and we all tint our hair [laughs]. Because you don't want to be grey, do you? [momentary microphone interference] And you think, 'I wonder what was in the tint?' But then hundreds of people would be like it. So you think, 'Well, it can't be that.' You think about the stress, because stress does a lot to you, doesn't it? And I was very stressed the year before I got it, for different reasons. And you think, 'Maybe you've just reduced your immune system from being stressed.' I don't know. 

And then you think about what you eat. And in the February before I was diagnosed I was a couple of stones heavier than I am now, and I was borderline diabetic. And I thought, 'I've got to do something about this.' Because it comes to people who are overweight, doesn't it? So I went on a diet. And I had, the only - I had a sweet tooth at the time, I don't have one any more - and the only way I coped with it was having a big bowl with raspberries, blackberries, blueberries, strawberries, all the berries on, and I had them on the table. So whenever I felt like something sweet I had some of this fruit. So that was from the February. And then when I was diagnosed I thought, 'All this fruit I've been eating, it's all out of season, it's come from Chile, all over the world. How did it get onto my table in pristine condition, not a bug in sight?' And you think, 'It must be full of chemicals.' So now I buy organic as much as I can. Because you think, 'It's not normal to have raspberries in February, is it?' And they're all, I mean you don't have to look in them for bugs, do you? Whereas when I was little they were all full of little creepy-crawlies, weren't they? So you think, 'All these pesticides and--' So I might have done it really to myself, I don't know.
 

Edited text prepared by Peter

My experience of doctors dealing with neurological conditions is that they appear helpless to say the least in terms of giving any help to people who have neurological conditions, and certainly as relates to MND. To repeat myself, doing nothing is not an option [since the only way that patients can be helped to live longer and still have fulfilling lives is to give them some hope, however slender, and something useful to do]. Patients who have been diagnosed with such debilitating illnesses require active support from the medical profession, not only in terms of being diagnosed, but in terms of advice and help that can be given.  Judging by what I've heard and spoken to with various people in various organisations, it would appear that the idea of stem cell research and other like matters is not being actively pursued, again possibly due to lack of funding. There appears to be no attempt to collate experiences, symptoms and circumstances from each patient in order to find a common denominator which could indicate a possible cause for their illness. The members of the medical profession dealing with neurological disorders that I've come in touch with appear not the least interested in pursuing that kind of line of enquiry. That line of enquiry seems to me the most logical in perhaps advancing the better understanding and thereby later on better treatment of these neurological conditions.
 

I, my husband, husband and I met at university, when we were 18, in our first week at university. He was very convenient. He was in the dorm opposite me in halls. So we were together through the whole of university, and so we'd been together for three, four years probably when Dad died, which has been a huge help actually now going through all this. I don't know why. I think it's because it, it helps set the scene a bit for [husband]. And I think before we got married he, he knew the - [tearful] he knew the deal as well.

I can't, I don't really have a memory of any specific discussions, although, ...because it was matter of fact. You know, he knew that, we knew that, you know, my uncle had died and my father had died, and also their mother, actually. Looking back at the records now, although they diagnosed it as maybe a stroke or, you know, something like that, that was back then, but actually looking at it now it's likely that she had it as well. But they can't go back any further because she, they think that she was adopted. So that's where the family history ends. So I don't remember any specific discussions. But obviously [husband] knew as well as I did. Because it probably wasn't really clear until Dad died what the implications were for us. And I think we felt that it's something that affects older people.
 

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.
 

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.
 

And did, did any of you ever have any genetic testing?

No. We, I know my sisters and my cousins did talk about it, and at the time there wasn't really any testing available. We, I think they were just starting to develop it and they'd found there was some testing available for the SOD-1 gene. But we, I think they tested my father's blood and found that it didn't have the SOD-1 gene mutation. So we felt that, you know, there was no point. But before that I think my sisters and I had decided that there wasn't any point anyway.

It wasn't really going to be of any help to us because it wasn't, it wasn't going to change any decisions we made or the way that we led our life. It wasn't, the testing isn't conclusive enough. You know, that, we were told that, “Even if you are found to have the SOD-1 mutation, then you may well not go on to develop it.” So we didn't find that it was very helpful. And it wasn't an option to us anyway in the end.

When you say it wouldn't affect any, any decisions that any of you made, is that also true about having children?

I think… well, [husband] and I did go and see - oh - my husband and I did go and see a doctor that specialised in genetics and he - just to talk about this issue when I was first diagnosed. And we felt that the, if we had the test, it wasn't going to give us enough conclusive evidence. And also for us, having children when I'd already been diagnosed was going to be too much of a bigger strain. I think for my sisters, we - I don't think it would have affected their decision. I think - although now, in hindsight now that I've been, been diagnosed, I don't know. We haven't really talked on that level. Although I know that within the family we're all very keen to kind of stamp out the gene. And if testing is going to allow - the research into testing is, will hopefully allow decisions to be made in the future that will really help stamp out the genes, mutations, or you know - and embryonic testing and that sort of stuff.