Motor Neurone Disease (MND)
Support groups and meeting others with MND
For many people diagnosed with a serious condition, voluntary support groups and self-help organisations offer valuable help in many different ways. The best-known support groups for MND in the UK are the MND Association supporting England, Wales and Northern Ireland, and MND Scotland. Most people we talked to had contact at some level with the MND Association or MND Scotland, especially to obtain information. Hospital neurology departments normally tell people about the MND Association soon after diagnosis, and many hand out MND Association leaflets. Most people were very positive about the information received, although a few found it too negative or too overwhelming at first. These views are discussed in more detail in 'Information needs'. (The MND Association stages the information provided to allow people to absorb it in their own time and at their own pace. Additional resources can be requested if and when the person feels ready).
As well as written information and their website, the MND Association provides many other services. Their helpline, MND Connect, provides information and support to people living with or affected by MND. They also provide guidance to health and social care professionals about MND.
Some people wanted only information and advice, especially when first diagnosed, while others looked for active involvement with support groups. Some said their views about this had changed or might change over time.
The personal information folder from the MND Association was very useful. At first she didn't...
So actually going along to a local, getting some local support?
You said you summoned up the courage to go along. Tell me about how you were feeling about going beforehand.
Very mixed really. Feeling that we ought to give it a go. I suppose a big thing that I've had to move from is having been a head and having also kind of helped in a voluntary capacity at various places before, I've tended to be the helper. Now I've had to move to the situation where I'm the person being helped. And I think perhaps that was part and parcel of the emotional getting ready for these meetings. A very jolly chap was chair at the time and he immediately made us feel at ease by just treating us like everybody else. And I think that's one of the big advantages of the meeting. You are just an ordinary person there, you're not somebody special. But, yes, it was the hurdle of getting over meeting other people with MND. Which I know and I respect that some people just don't ever want to do. But I have found it helpful rather than unhelpful.
What happened at the meeting?
The first meeting we went to, the speaker, because there's usually a speaker, happened to be somebody from the head office of the Association, who was talking about Association visitors. And she did it in a very light-hearted quiz way and a bit like Who Wants to be a Millionaire. So although [my husband] and I, sorry, my husband and I didn't know anything about the visitors at the time, we just joined in with a group and it was good fun. And there was coffee and chat and people would say, you know, 'Nice to welcome you, you know. Why are you here? Which one of you's got MND?' because it wasn't quite so obvious then. And, you know, just pleasant really, just friendly company. And that was great.
He advises everyone to contact the MND Association and take up the help and advice available from...
And I should have said earlier regarding newly diagnosed patients is that they should get in contact with the Association as I said, and the head office has a website which is very useful, good starting point I would say. And I think the website is www.mndassociation.org. There are also local branches scattered around the country. And these branches have people called visitors who basically can visit you at your home if you request them to do so and give advice and guidance as to any problems you might be experiencing or might be experiencing in the future. The local branches also can and do provide funding for anything, really, whether it's a stair lift or a motorised scooter or whatever. I mean they may not be able to pay the whole value but they'd certainly be able to make some sort of contribution and give advice as to where to buy the equipment from.
Many people had doubts about meeting other people with MND at social events. Some were put off by the whole idea of group activities. One woman explained, “I'm not a day centre person” and others too said it was just not their sort of thing.
She does not want to go to the day centre at the hospice where she sometimes has respite care....
What do you call a day centre person?
I don't know, but you know how some people love the WI or - well, I'm not that sort of person.
Do you mean like some people like groups?
Yes. I think people get a comfort, possibly. I mean, I wouldn't want to sit and paint and knit, and that isn't me. And I don't want to know about where they live and what they do. I'm very interested in people, but I don't just want to know their business, that isn't. And I find that sort of thing a very personal.
They want to keep life as normal as possible, and so they chose not to contact a support group.
Mary' I haven't gone down that road yet. No. We want to try keeping as normal as possible as long as possible. So that's what Jack said when he saw the lift. He said, 'Looking at it makes me feel like an invalid, you know, and I want to carry on as long as possible.'
Others were more concerned about how they would cope emotionally with seeing other people with MND, especially those whose symptoms had progressed further than their own. Several said that people living with MND had such varied symptoms and needs that they were unsure what they could learn from each other. One man was also worried it might upset others to see him, because he has PMA which tends to progress more slowly. But some people wanted to encourage others to overcome their worries about this and stressed how supportive and reassuring they found the groups. Some were surprised that the meetings could be cheerful, not depressing.
For the first year Roland did not want to go to a support group. He worried about seeing others,...
Oh that's a very good question. In the, well probably my first year possibly longer I didn't want to go to any association meetings. Partly because I, mainly I think probably because I didn't want to see people who were poorly and were in a state, situation that I would be in some point in the future. A sort of a mini denial if you like.
And also I was aware that I was going to, you know I would not be typical. I'd, might sound a bit silly but I was a bit conscious that if I'm wandering around claiming I've got motor neurone disease and I'm there for year after year it might upset, upset people who were, weren't, hadn't been given very long to live, you know, one or two years. I mean that was, a silly idea of mine. And on the same vein it, it has been a little bit shocking on occasion. So we've, we've been going to both branches regularly for the last, I don't know, five or more years. And I can remember one occasion we heard a, two new members, patients talking about their experiences and six months later they were both dead which is a, well a bit shocking really.
So that's something that's going along to the group is something you had to deal with because you, you get to know people like that.
Yes, yes. Having said that one of the branches has at least two people who are in the same situation I'm in. So, well, just proves we're all different and you can't make, shouldn't make generalisations. There's no point in, it's, there's no need not to make friends on the basis that they won't be around in six months time because who, who's to know. And one of the, the guys is I think had the disease for over twenty years and he's trying to emulate Steven Hawking, I think, but who knows?
She enjoyed a hospice support group in New Zealand but now she's back in the UK she's not sure...
But after the first time I went I really enjoyed it. And I, I found quite a bond with those girls that, although they're completely different people and different ages, different interests, we had a sim-, we had the same outlook on life. Little things like, you know, we'd always be going on holiday. And, and when someone said, 'Oh, I'm off to Fiji in two weeks time' the other girls wouldn't say, 'Oh, aren't you lucky? I'd love to go to Fiji.' You know that you're not lucky, you know that you're making the most of the time that you've got. And it, just little things like that that weren't said. So I miss them. And, and so when we moved to the UK, I was very keen to make contact with a hospice here and that network.
I haven't yet. And that's just really the time that I've been here. I did get a letter this morning from the MNDA inviting me to an event. And I'm going to need a bit of encouragement to go. Even though I've been to - I had this same feeling before I went to the, the group at the hospice before and, and knew that it was, once I went it was fine - it still makes me hesitant to do it again. And also, probably more so, with other MND suffers, sufferers. Even my cousin, my cousin's also suffering from MND, and I'm hesitant about meeting up with her, although we've started talking on the phone more regularly, and I do, I really like that. I like that we can both rant on and we find the same things frustrating, and that someone really understands. But in the same way it makes me feel sad that I can talk about those things with my cousin.
Yeah, it's a bit of a mixed thing, isn't it?
It's a mixed thing.
Because if you go and mix with other people who've got it, you're going to see'
Further down the road, potentially.
Yeah, and - yeah.
And I think that's the thing that is scary. And I'm not sure how it will benefit me at the moment.
Going to support group meetings has helped him come to terms with MND. The emotional support and...
So it's not, you know, planning from now until, you know, I'm lying in a bed totally paralysed with somebody working me on a respirator or something, you know. Leave it, just concentrate on today, but accept the fact that you've got to live today, and become involved. Get involved with the Motor Neurone Association. A tremendous amount of goodwill and support comes from that, knowledge. The people in it are people who have nursed people who've suffered from motor neurone disease, and then carried on to become visitors of the association. It could be parents or loved ones that they've lost, but they want to put something back through the association. There's a tremendous amount of support there. And if you go to carers' meetings it's not about medical - it's about fun, it's about how you enjoy yourself, making sure, you know, nice relaxing massage, you know, all sorts of things. You know, knowledge. You're not on your own. Other people have been there. Why travel the same road and map it out when somebody's already been down it and made it a motorway? So, you know, you can whip down, you can bypass all the hurdles, because people have already done them for you. And then you can start finding hurdles further down that you can attack and, and progress on with.
But I would advise people really to get involved, you know, get out there, find out what's available both in your local community - we're members of the local carers' association, we're members of the Motor Neurone Disease Association and the Oxford branch of the carers' association, and we get involved in everything that we can, because it helps certainly me come to terms with what's going on within me. Secondly I can feel that I'm helping other people as well as myself. And it gives Janet the fact that - my wife - that she's not isolated. There are people she can turn to, people she can talk to that understand and know what, what she's going through. And that's very important.
And as I say, if I sort of sum up with anything it would be, 'Get involved, embrace it, get involved, become members of the carers' associations'. They're so much help, they really are. And I've never belonged to anything like that in my life, neither has Janet. We've always gone our own way and done our own thing. But on this you need help, you can't cope with it on your own. It's too big. There's too many things that you need, and you need to know about. And if you try to do it independently you'll miss out on so much.
He was frightened about seeing people whose symptoms had progressed more than his, but in fact it...
But you know, what I found is that it was helpful. Not just practically but it was helpful because you know they were all coping and so I could see that they were coping. And then that, that sort of made me feel better, then it seemed like well this is a problem that I can, I can sort of deal with this. And I'll know that, you know, I'll be all right if I can you know that, if they're able to cope then, you know, I should be able to cope as well.
Some people liked the possibility of exchanging practical advice, even though they might find it upsetting to see others with MND. As one man said, “Discussing problems, I don't find much of a help. Discussing solutions, I do.” For some, helping and advising other people was as much of a reason to go to meetings as getting support for themselves. One woman trained as an MND Association visitor.
Doctors sometimes send newly diagnosed people to meet her. It wasn't always easy to support them...
I trained as a visitor in 2004. Because I kind of, I'd made the decision to leave work and I was thinking, 'There's a long winter ahead.' And that was one of the other things about leaving.
It was becoming harder and harder to physically get to work. If there was ice on the floor and the car needed, I couldn't scrape the windscreen, so I had to sit for hours. [microphone interference] And then as I was, I made the decision to leave, I saw on the Association website that they were looking for Association visitors. And so I rang up and asked had they had anybody with MND be a visitor before? And if not, why not, kind of - could I? And they said that, no, they hadn't, but there was no reason why I shouldn't be allowed to do it. But I'd have to go through their interview process and, and do the, the training, which was over six months. And then I can do it. But really I was doing, it was the sort of thing I was doing anyway. It just made it more official, and hopefully made people aware that there is a local branch and there is head office and there is support, that they're not alone.
You see I was fortunate - or unfortunate - but because it's in the family I was already receiving Thumbprint [magazine] from head office. I joined anyway because of my sister. So I already knew what was available and, and where to go for help. But a lot of people who are newly diagnosed often don't, or choose not to. And also a lot of them don't want an Association visitor or any formal contact. But one of the things I can do is, because I've got MND and I am an Association visitor, people will often come and talk to me because I've got the illness, rather than because I'm - I've got like two heads. And I don't see - I see myself as, more as just a friend. And if I can help them, put them in touch with anybody that they need, then all well and good. But if they don't want any contact, that, I have to respect that as well.
People who had a common form of MND such as progressive muscular atrophy (PMA) or primary lateral sclerosis (PLS) often wondered if support groups would be appropriate for them. They worried about whether they'd be upset to see people with faster progression than themselves, but also whether their presence might upset other people too. However, some found when they got there that they still had plenty in common with other people there. (See Roland, Interview 17 above). Similarly, some thought support groups might not suit younger people, although one young man in his early twenties was keen to go because he'd never met anyone else with the condition.
As someone with PLS, she felt meeting people with more rapidly progressing forms of MND would be...
And have they given you any practical'
No, she came out, she was quite firm. Quite a tough cookie. And you know, was not going to do the sympathy vote on that day. She was quite tough.
How did you feel about that?
I think I needed it that day. She was more or less saying, 'Come on, you've got PLS, not the other one. You're damn lucky. Come on, you know, get over it a little bit.'
Do you think you might change your mind about that when'
I have changed my mind.
Because they've since contacted me with a small event, which was in September. I couldn't do it because I was doing something. They then said would I like to do the next event, which was not even sent with the thing on, but I've got a number, and it's in November and it's a sort of pampering day thing. And I've said I'll go. So I have moved on. I know there'll be the MND there, but I've said I'll go. So I've moved on. No I won't, do not want to Go and sit at the day centre at the hospital that I happened to peek in through the window, people in chairs all round, you know, tables and stuff, and no way will I go there, because they looked pretty rough, some of them. But an odd day yeah, I'll do that.
His 22-year-old daughter felt a support group meeting was not right for her, partly because her...
Barry found it upsetting to meet others with MND and does not want to share how he feels. Ann...
Not really, no. I've met a few basically through, not necessarily through the MNDA, but, yes, through them. And we've seen people at the hospitals and things like this. But when Barry has been invited to go and meet people, he has put his foot down and said, 'No.' He once many years ago went to a clinic in, in London and he saw a lot of people in wheelchairs, wearing collars, looking very unhappy. And he turned to me and said, 'That can't be what I'm going to be like. I don't think I can stand it.' Well, that's exactly what he's like now. He doesn't always wear a collar, but, yes, he's in a wheelchair. And he can't bear it. But that's just him. So, no, he doesn't want to meet anybody else. He doesn't want to know how anybody else is feeling. Because he's got it every day, he says. People have invited him to go for counseling, to talk to psychiatrists or whatever. And they, and he just says nobody should have to hear what's in his mind. It's very dark and not necessary to share. And that's how he feels.
When you saw those, the other people, were you with him at that time?
What did you think?
I was in a state of denial at the time. I don't think I found it as scary as he did. But then again I wasn't the one suffering with it.
Some local branches run separate meetings for carers, but often meetings involve both carers and individuals with MND at the same event. Many people liked this. One carer said she found it, “Quite humbling that you are with these fellow travellers, people you would never otherwise have met or been friendly with in your life, but who are on a shared journey.” But a few mentioned problems with joint meetings. (See also 'Impact on family carers').
She wanted to ask what it would be like for her father as the end approached, but felt it was...
One other person whose husband had died said to me briefly 'Oh he just died,' and then that was it, she didn't want to talk about it any more, and that was at a motor neurone disease coffee morning. And the woman who ran the local branch was very, very good and wonderful and I had her telephone number, and I could phone her at home and all those things, but she was evasive. And I suppose at the end of the day you just can't say what is likely to happen.
She went to a support group meeting, but felt it was more aimed at carers. Exchanging practical...
We went to this lunch, and what did it do for me? All right, I met other people who have motor neurone disease. Do I really want to do that? Because there were people there who were quite badly affected. Do I really want to see what I could end up like, and have everyone patting each other on the back? And holding raffles, the proceeds of which were paid for by myself and my partner and other people and their - you know. So we were all paying the money into the - it just, the whole thing just seems pretty ridiculous. And I'm not really sure where, where the whole thing's going. I just feel as if it is a self-help group for, for spouses of people who've died of motor neurone disease.
So it would be better if they had some targeted meetings that were for people with the condition, and maybe something separate for friends and family?
Well, I just don't know. I'm trying, I've been trying to work out what would be a better format. But I can't believe that having a lunch that's - I'm not sure who paid for it. I think it was partially paid for by the place we were at and partially paid for by the Motor Neurone Disease Association. And if that's the case, I'd rather the money was spent on research than having a Christmas lunch. And I'm not really sure what's the best way to go. But I'm sure that isn't the best way to go. I'm sure as hell it isn't [laughs].
The MND Association hosts an online forum for all people affected by MND. This provides a safe and popular forum where people can share experiences and support each other with the challenges of living with the disease. Many people also join build-uk.net (magimedia.co.uk/buildforum), an email discussion forum and self-help group for people living with MND, and patientslikeme.com, an online community where people share information about their symptoms, treatments and outcomes. (The Patients Like Me site includes communities for people living with other conditions). Being able to contact others over the internet was valued both by people with mobility problems who found it difficult to travel to support groups, and by people with speech problems. Some people felt it was less emotional than meeting people face-to-face. However, people still had differing views about how much contact they wanted. One person found the personal photographs posted on build-uk.net upsetting, and some had been saddened when regular contributors died.
Using sites like BUILD-UK and PatientsLikeMe has been a great way to communicate and share...
She values contact through the BUILD-UK site, but has taken a break from it, as she felt MND was...
And is that how you deal with bad times by distancing?
From that and pulling on the strength of my family and friends. I used to be scared to tell my family when I'm having a bad time or particularly upset because I, obviously they're very upset as well and I didn't want to upset them any more. But I find that they actually like it when I say, 'I need your help' or 'I'm feeling down' or 'depressed' because they feel that they can actually do something to help me. And the way we do it is they just take me out and about and get me out of the house and, you know, just socialise with me. And it's amazing how being. I mean it's a big difference to your mental health and how you're feeling as well. And then you can get that you, I just feel I can draw strength from them to help me deal with my illness.
Is that the BUILD site you were talking about?
Yeah, yeah, the UK BUILD is excellent yeah.
That's a very active site. The people who are on it use it quite a lot don't they.
Yeah they do, yeah. I used to be a regular on there but they obviously have noticed I haven't been on there because I've had a message from one of the other regulars saying to contact him because they haven't heard from me for a while which is nice as well. Yeah.
I was going to ask you if you'd got in contact with any other people who have MND, if that was something you wanted to do?
I haven't met them face to face. It's quite difficult really because you're quite widespread but often through BUILD you'll just start e-mailing each other through your personal e-mails. There's a gentleman I, who I've been corresponding with who's just recently moved into the area that I live in with MND. So we've been talking via e-mail and we sort of talked about meeting up but at the end of the day if you, if you've only got MND in common it's quite nerve wracking meeting up with them because you're thinking will we have anything else in common or [laugh].
And also it's a, it's a two-way thing. It's quite worrying. You like the support you have helping one another but you're scared that. I think, well I'm personally scared that if I met up with someone face-to-face and we started meeting up that if they needed to become reliant on me or to talk to me about their problems with MND that I wouldn't be strong enough for that. I mean it might not be the case that they would do that but you don't know. So I think to. I like having the e-mail contact but I don’t think I would want personal contact with someone else with MND because I think it gets too involved then. Often on UK BUILD you’ll find someone else who’s just died who was a regular contributor and that’s really upsetting. And that’s just knowing them from talking to them on the website so I think it would be even more disturbing if you actually built up a closer relationship with someone. So I keep my distance a bit.
She has looked at the BUILD forum. She doesn't want to make friendships with people just because...
Did you ever want to get in contact with other people who've got MND?
Not particularly. I don't think that having a disease necessarily makes you the same sort of person. So, you know, making friendships just because you both suffer from the same disease is not really a good basis for a long-term relationship I suppose. But I might do as time goes on. If I feel I want some sympathy and somebody who understands exactly what is happening, I might be tempted to go on.
Last reviewed August 2017.
Last updated August 2017.