Motor Neurone Disease (MND)
Most people had a partner or other close relative with them when they learnt the diagnosis. Afterwards, they had to decide who else needed to know, and when and how to tell them. Most people wanted to tell close family straight away, but this was often difficult and emotional to do, especially dealing with the different reactions of their children and other relatives. A few did not have their partner present and had to tell them too.
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 told his son first as they were going to a football match after the appointment. He told his...
I left Neurology and made my way along the long corridors of the hospital with a million thoughts going through my mind. What do I tell my family and friends and when do I tell them? My employer and fellow work mates had to be told - but how? Were we financially secure and ready to cope without my salary? Could I continue to live in our flat? These questions and many, many more all had to be answered in time, but my son was waiting for me and he would know something was wrong. I could not tell my wife - she was working until 10 pm and so was my daughter, but my son was waiting for me -he would have to be told. We were also supposed to be going to a football match - it was decision time!
On arrival at my car I told my son to drive down to the beach where we parked and I gave him the news. No airs and graces just the facts. He showed little signs of emotion, but that's him - I had my first 'bubble'. I felt a little better after this and so decided to go to the match, after all why should I spoil the fun of others. My friends were all keen to know how the appointment had gone and so I told them. It must have been one of the most subdued corporate affairs I had ever been to. After the match we took the long drive home, my wife still knew nothing of this and I was dreading telling her. On meeting her I broke down again, blurted out the news somehow and we went to bed, both crying. Oh! and Scotland were beaten 2 - 0. What a day, but I think the decision to go to the match was the right one, sub consciously I was already Living with MND.
I awoke next morning feeling emotionally drained and I knew there was more to come. The President of the Golf Club [where Sandy worked as club secretary], my work colleagues and my daughter had to be told. My daughter had to be first but I did not want to tell her at work. She was the head steward at the club and would be in at 10 am. But could I keep the news from her until she finished in the evening? I doubted it!
My first visit to the bar (not for a drink) at about 10.30am brought me face to face with my daughter and that was that, I broke down in tears once again whilst giving her the news. It was a long day after that. I met The Club President and asked if he would inform the Council of Management, I in turn would inform all other employees of the Club. I wanted everyone to know exactly what was wrong with me - rumours abound in a small community and I felt that by telling everyone myself there would be no rumours and to the best of my knowledge this seems to have worked. So with everyone told I could now return to what I enjoyed doing most - working at and playing golf.
His grown-up children have all reacted differently. One son has been more emotional than he...
Parents of younger children had to decide how much to tell them, depending partly on their age and personality. One woman told her colleagues immediately about her diagnosis, but waited till the summer holidays to tell her children, when she could spend time with them. Some people wanted to be as open as possible with their children and thought they would guess anyway, while others wanted to shield them. One man felt asking his teenage son about his feelings might upset him more, so they avoided the subject. He told his son he might live as long as Stephen Hawking. Several referred to a booklet on talking to children provided by the MND Association (see resources for links).
He wants his children (aged 11 and 9) to enjoy their childhood. They have not told them...
Michael' It has affected the children in a number of ways. There could be better, more easily available support, I think, for the children. It's difficult for us because we don't particularly want to give them information they'll not be, may not be ready for. We've had the discussion and it's - well, we'll give them information as they ask. Some people say, you know, you should perhaps tell them. They may be angry at a later date if you haven't. I think I'd rather live with having allowed them their childhood for a bit longer. I already think kids grow up too fast these days as it is, you know. And I, I look at the childhood that I had and the childhood that they have and it's so different. It was all so much more innocent. And things have changed anyway. Do I want them to have to grow up much quicker? Which they'll have to with the bereavement. Well, they can do that when it happens. 'I don't particularly want them worrying every day at school, 'Will Daddy be alive when I get home?' [wiping eyes].
Has anybody offered you any advice on how to talk to the children?
Michael' [looks to wife, who whispers] Yeah, there is a booklet from MND, which we've looked at. We try to be as open - how does that sound? One minute I say we don't want to tell them anything, the next I'm saying we're trying to be as open as we can. I try not to be as contradictory as I am [laughs].
Sam' We don't lie to them.
Michael' We don't lie to them, no [phone ringing]. But we have been sensible about what we say.
She didn't tell her son (now 13) the name of the condition at first but explained she might need...
And he'd go, 'Noooo, can't talk about that.' Or he'd put his hand up and go, 'Oh no, we're not going there again.' Or I'd cry - and I tried not to cry too many times in front of him, but obviously it's happened about half a dozen times, and who could help it? I'd cry a bit and he'd, and he'd say, 'Ooof.' So, he didn't want to know. So, when I cried a few times more I said, to him, 'I know this is a difficult for you when I'm crying,' I said, 'but if you could just, if you could just say something like, you know, 'I know it's hard for you, mum', and leave it at that, then I know you've heard it.' So he [laughs], next time I cried he goes, 'I know it's hard for you, mum.' I said, 'Oh, well, that's nice of you.' And so we were having this silly false conversation now. But anyway, I said, 'Oh that's nice of you, you know, there we go.' And I, anyway I had to keep saying, 'I'll end up in a wheelchair,' because I thought it best to keep saying, because he kept going, 'No, whatever.' So I, I'd leave it a little while and then I'd say it again. 'I could.' He went, 'OK, I've heard you. I've heard you. OK.' I said, 'Fine, well, now you know.' And then it's only recently that I gave him the name, because I said to him, 'Do you know the name of it?' And he went, 'No,' he said, 'but I have heard you say.' And I said, 'Ahh, well, it's this', I said, 'But it's very, very rare.' And as you can see, I've hit the wheelchair.
How's he responded to that?
Mixed. He was in denial about it for quite a long time, particularly when the chair wasn't out. He seemed to think I could do things that I couldn't do. And then gradually he realised that there was a load of stuff I wasn't doing anymore, so he wouldn't ask. I had to take people on holiday with us, I wouldn't be doing town anymore. Well, I manage town with the scooter but he's had to accept that it's, it's, you know, that I'm no longer his plaything. Which I certainly was before, because that's the way we went on. I'd fill in lots of gaps - no friends around or something like that, I was there. On holidays, I could fill a day for him, drop of a hat. Because I wanted to, because that's what we did. You know, I've been like a best friend to him really. More. And so I miss all that more than he does and I have to say to him, 'Oh, you know, I would have liked to have, I'm sorry I can't.' And he goes, 'I don't mind.' I go, 'But I mind.'
She wanted to protect her children (now 12 and 10) from worrying about it but in the end told...
Yeah I didn't at first because I didn't know how to tell them and I wanted to protect them and my worry was my son because he's 12 years old and I thought if I told him the first thing he would do is type it on the Internet. And if you type in the name, motor neurone disease, in on the Internet you get all these horrific things come up. And I just didn't think he could cope with that. But in the end I had the local news, the radio channels asking me about my MND because for a, for a joke and to raise money I'd actually sold it on E-Bay [laugh]. So, to raise awareness of the disease.
So then obviously I had to tell my children. So I explained I had this disease called motor neurone disease and that I would never get any better and that I would slowly get worse and I wouldn't be able to walk anymore. And my son asked me, 'Would I die?' And I just said to him, 'Well we're all going to die someday. I'm going to die but we're all going to die someday. And I don't know when just like you don't know when you're going to die.' And he sorted of accepted that, but he is very worried about me, very concerned, gets very upset still. But saying that he still is his normal self. I haven't noticed a big change in his personality which I was worried about.
My daughter seems to cope with it quite well. I think the hardest thing is that they've, from being my, their mother and their parent and being their carer and running around after them. It's turned and they're my carers now. And my son makes me food and he makes me hot drinks and my daughter helps me to the toilet and she has to do my clothing for me to go to the toilet and at 10 years of age it's quite heartbreaking to see. And it must be very hard on them as well because they had an active mum that used to go body boarding with them and in, in the holidays go down the water parks.
They find it quite hard because went on holiday this year abroad and it's the first time since I was disabled. And we went to a water park and I was in my wheelchair and my son said, 'I just really, really wished you could come with us on the slides'. So it's hard for all of us and my husband as well.
Do you think there is anything that has helped them in the last year, the last few months, that's helped the children?
Just being my normal self with them really. They still don't get away with too much [laugh]. I'm still a strict parent but I mean I think because I'm honest with them and if they ask me a question I will give them an honest and truthful answer and I think that they know that. And they asked me a few questions and when they realise that I would be honest with them I think they're quite selective in what they ask me now. And my son's stopped asking questions now.
It's almost becoming a part of their lifestyle now that I'm like this. I think the biggest help for my children is I've got a close network of family living in the area and we're, and they support us immensely. And they've got so many uncles and aunts and my parents and they've got cousins and I think that's been the biggest support. Is that life goes on only it hasn't changed their lifestyle too much or hopefully it hasn't anyway apart from having to care for their mum.
Some people had to tell their own parents that they had MND. One man waited several months to tell his parents and advised them not to look at the internet. One woman said her mother was sad about it but had her own illness to cope with at the time. Another woman explained that most of her friends reacted positively but her mother was angry - at the diagnosis, at the lack of a cure and at the thought that her daughter might die before she did. One man also said his mother reacted angrily.
Most people were very supportive but her mother was angry at the diagnosis, and one of her...
I have a very close friend, who is younger than me by about ten years, and I've helped her a lot through a difficult time with her marriage. And she couldn't cope with it, because I was now the one that needed the care, and yet I'd been the helper. And that's been hard for her, and hard for me really. But we've kind of sorted it through now and we're back on an even keel. My mother couldn't cope with it at all. She was angry. She had all the anger that hasn't hit me. So she was cross with me, she was cross with MND, she was cross with the Association because they hadn't got a cure. And that was quite difficult and we had to have quite a few words with, I ended up saying, 'Look, you've got to accept, mum, it's the quality of life now that matters to me, not the quantity'. And I guess the hardest thing for her was the fact that her daughter was going to die before her. But then, bless her, last year she got kidney cancer, was ill for about two months and died. So it worked out the right way round in the end. But she was so angry.
Other people. My husband is a brick. He's far better at coping with me being ill than I would be at him being ill. And I think like me he's not been angry, but obviously we have bad moments and we have weepy moments. And they tend to be first thing in the morning before we've got ourselves sorted. But then we find something silly to laugh about and get on with the rest of the day. Kids help, I think they worry, but they try, they kind of come and, my daughter lives in London, so I don't see as much of her as I'd like to. But we're on the phone most days and she's always practical, you know. My son lives in [a nearby town], in the town. And he comes out and is quite a strength really, and will do helpful things about the house for us as well. So, yes, it's been a really good reaction from most people. I have one funny one. I bumped into an ex-neighbour in the local supermarket about three or four months after being diagnosed. And 'Oh, hello, how are you, how are you, how are you?' And I said, 'Oh, I'm not so bad, but sadly I've been diagnosed with motor neurone disease'. 'Oh, dear. Apart from that, are you well?' And so obviously she had absolutely no idea what MND was. But that was quite a funny one. But most people know it's something horrid but are not quite sure what it is.
His mother shouted at him when he told her he might have MND.
My mum only'.It's difficult to cope with her. When I ring her, I call her - I remember I'd been driving and I told her what I suspect. It was I think after the first visit to the neurologist. I say, 'So it's a possibility is that, you know, motor neurone disease, which normally people live two years, and they are dying.' And she shouted at me, say I'm the idiot.
Is that just because she can't bear to think of it?
I don't know. Maybe. Maybe nothing bad can happen to her family.
Many people talked about the dilemma of how to tell wider acquaintances and old friends they saw less often. It could be upsetting to have to keep explaining and dealing with people's reactions.
It was upsetting having to explain the diagnosis to lots of different people and make them...
And then of course they often don't know very much about it, so you've got to actually tell them all about it. And then they sort of and sometimes they don't hear that. Sometimes you find you're talking to them again later and they haven't took that bit in. It's like they haven't quite clicked that you've told them that you're going to be dead soon. You know, you've got a few years but you've not got a long time. Or that it won't be that long before you're not able to walk at all. They, they sort of, they hear it but they don't really change the way they're thinking about you.
So sometimes you've got to like tell them more than once, you know, so it becomes really clear to them. And then obviously as the illness has developed then that's got rid of that. But at first it took quite a lot of effort to actually to get people to see it really.
And that's, that's difficult for me then, it's upsetting. Because it's sometimes it's only when you have got through to somebody and they're, and they're feeling sad for you and then, then it really hits you how sad you feel for yourself as well. But normally I sort of keep that to one side. But it's when it's in somebody else then, then, which in a way is a good thing because it's a sharing thing. You know, you're sharing your feelings. But it is hard work. But it, you've just got to do it really. So, you've got to. Because you can't really move forward until, you know, if there are people that you haven't, that are important to you and you haven't told them, you know, you can't leave it like that, you've got to' And then if you did leave it like that I think they would feel very upset. And you're also cutting yourself off from support and so on. So it's something you need to do but it's not a very pleasant thing to do. Yeah.
They set up an email group to tell people and keep them informed. It gave them great emotional...
But we got very strong emotional support from a widening group of, of friends and there was a core group, there must have been, I don't know, probably thirty or forty who I kept in touch with all the way through telling them how it was going, because what we didn't want was to be constantly on the telephone answering people's questions about how Olivia was doing. And the easiest way around that was to actually strike up an email group and I would provide people with information, and they'd come back with ideas and if we were going for consultations, I'd let people know that we were going to [hospital] and that we were looking for, you know, good vibrations coming through and it was a wonderful support for us.
But again if you don't have that peer group which can give you that support it must be terribly difficult to actually emotionally - and I could see because of the tiredness how marriages must be put under huge strain, but because we decided we'd take charge, rather than having, well in the, in the absence of somebody else taking charge essentially that we'd take charge of the situation, we were able to do that. Because we were so involved with everything day-to-day and that we were taking responsibility for it, we could then communicate directly with this group of friends who were able to give us moral support and emotional support. And it was one of the advantages of the modern technology I guess.
Did it enable you to feel in control in any way, because it is so a, it's such an out of control situation?
Yes it did. Although there were always these caveats that nobody was really in control of it, it was the disease that was in control of it and we didn't know which direction that was going. So, it gave us something to fall back on, it gave us, I mean it, it was the true meaning of friendships really, and my wife and I have a very close marriage anyway and we were, we were much stronger between us.
One woman who was already unable to speak put an article in the parish magazine so everyone in her village would understand. Several people wondered whether to put something in their Christmas cards and what impact this would have on their friends.
They put a note in their Christmas cards explaining Ken's diagnosis. Most friends have been...
So, and at Christmas time we wrote a sort of a standard letter that we could post to everybody, the people that we hadn't told about Ken. And we just had a letter and a birthday card and they want to come and see you, don't they? And again they were just old neighbours that, you know, you sort of keep in touch but not - and so they're going to come, aren't they? We've just got to get in touch with her and arrange some sort of date. I don't think anybody's really backed off, have they? But we've been more family orientated than friends.
She told friends she was ill in her Christmas cards, because she thought they'd feel awful if she...
And how have people reacted differently?
Oh, everybody differently, everybody differently. Some want to talk about it, others don't. One particular friend burst into tears, and I was comforting her [laughs]. But she's a very good friend and she does a lot for me. But everybody takes it differently. And some look on the black side, and some look on the better side and sort of think, 'Come on, we'll get you through this.'
A few were saddened that some old friends seemed unable to cope with the news and stopped contacting them. As one woman said, “Some people that we thought would be here and supporting us seemed to be hiding.” Another woman got only two responses to the Christmas letter she sent out explaining her diagnosis. She said, “People don't know what to say and you certainly find out who your real friends are pretty quickly with this business.” Some people chose not to tell everyone they knew.
Some people have been supportive, others have stopped phoning altogether. She has not yet thought...
And these friends who've contacted me, two of them do quite a lot. I haven't told my old school friend. I don't know whether you write and say, 'Cheers, dear, I'm on my way out.'
After her mother was diagnosed she took her on holiday with one of her mother's friends. She was...
One woman said although some people didn't know how to react, “friends have emerged who really have that quality of empathy, who really can understand what you're going through… And that's been the most amazing thing - good things happen through all this horribleness.”
Deciding when to tell work colleagues was another issue for many people, particularly if they thought their employer might not be supportive. One man found the matter-of-fact way some of his work colleagues reacted really helpful.
He felt very vulnerable telling his employers but they were fantastic. He liked it when people...
So this was the point at which you told them that it was motor neurone?
It was the point at which I told them. And again, it was fairly traumatic when you're telling them, because these are people you've worked with, know you, and there are a lot of friends, in real terms. And it's very emotional again, that the things that you've done and are going to do have that impact on that situation. And again, you're becoming vulnerable, you know, because you're having to open up to people and tell them things, and you feel very vulnerable when you're doing it. And of course once you've told the company, you've got to tell your colleagues. And they take it differently.
And again there were sort of three sorts of reaction. Unclean, 'I don't want to catch it, so [coughs] I'm going to stay away from him.' Over-reaction in terms of sympathy. And then fortunately for me I worked with a lot of heavy goods vehicle drivers, who have a tremendous sense of humour. And it was just business as usual. And that did me the world of good, because they kept me straight, they kept me narrow. And that's what you want. It's business as usual. You don't want people to make exceptions for you, particularly - I didn't.
Experiences of staying at work or deciding to stop working are explored in more detail in 'Work and career'.
The MND Association provides information sheets and guides to help families communicate about MND, including sheet 4A: Communicating about MND to children and young people.
Last updated August 2017.