Finding support around inherited MND

This section covers people’s experiences of finding support from others around inherited MND, including:

  • Support from family members
  • Talking to friends and colleagues
  • Peer support: connecting with others online and in-person

Support from family members

People found support around inherited MND in many places. Partners and other relatives were often a valued source of support, with whom people could share their worries, discuss anything on their minds, or talk through issues like genetic testing. Robyn’s cousin is “somebody I could speak to”, “I remember just going over to her house, I think with a bottle of wine or something, and just sitting and the pair of just cried and laughed and talked and whatnot… she’s always said to me, ‘if you want to chat, we’ll talk’”. Kirsty describes how in other situations in life, she and her sister may not have always turned to each other, but here, “she was the only person who was going to be feeling exactly how I felt”.

For Kirsty, it didn’t feel fair to go to her mum with her worries around inherited MND. When she was “freaking out”, she reached out to her sister for support.

It was, I guess the difficult thing as well was that normally the relationship I have with my mum – I’m really lucky – is that if there’s something in my life that’s upsetting me or distressing me or worrying me then I go to her and she is somebody who can counsel and comfort. But in this case the thing that was upsetting was the possibility of her becoming sick and I’m like, “Well she’s the person who would be sick”. So it didn’t, I was sort of, it didn’t seem right or fair to be going to her with all of those fears, kind of thing.
 
And this is where me and my sister have in some ways grown a lot closer through this, because we were in exactly the same position. And so if I was, as I say, going down the rabbit hole, then I would reach out to her, and I would call her and I would just be like, “I’m freaking out”. If, because when you start imagining it and you start thinking about the future and you start making those leaps in your head, there has to come a point where you put a stop to it because it doesn’t help. And to a certain extent you have to, well we all felt, or I felt that we had to try and park it, because until you have the information you’re crossing, my mum always says, “You’re crossing bridges before you get to them that might not even exist”.
 
But every now and again I just couldn’t help it, and so that was when I would then reach out to my sister. With her I could say, you know, “If it happens, we’ll be okay won’t we?” and then she would say, “Yes, we will and we will figure it out”, and it’s something my mum always said to me as well that, “You won’t be on your own”, like, “It’s not something that you will have to handle by yourself”.

 

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However, family members sometimes have different approaches to talking about inherited MND. Not everyone felt able to go to relatives for support – some weren’t close, others worried about upsetting or burdening them, or had family members who didn’t want to talk about it. In some families, people felt that it was hard for others to understand how they were feeling, particularly if they had no one ‘in the same boat’. Calum said, “you want to be able to talk to people that are at the same risk as you, so that they can understand the thoughts and processes and decisions that you’ve made, and when you don’t have people that understand that it’s really hard”.

One person described how their sibling receiving a negative pre-symptomatic genetic test result changed the way they communicated around inherited MND – having tested positive themselves, they felt they no longer got the same level of support or had someone who could understand.

Talking to friends and colleagues

Friends and colleagues were another important source of support for some people.

Richard values the support of his close friends around inherited MND. It is sometimes easier to talk to them about his feelings and concerns than members of his family.

Most, if not all, of my close friends I have spoken about it to them. I think part of it is that my strategy and sort of almost getting them to support me in that as well, in terms of this is where my head’s at with it all. Interestingly, a couple of them got quite upset when I was having that chat with them in terms of, “I’ve got this scenario where I could or could not have the gene and here’s what it means.” Some were like, “Yeah, that’s pretty crap, isn’t it?” sort of change the conversation a little bit. Whereas others, sort of want to find out more and, yeah… As, I say, some emotion flying around, as well, so… 

Helen and I have had long emotive, call it what you will, discussions about this obviously for the ramifications of our relationship and on our kids. But I’ve… outside of Helen, I’ve probably spoken to friends more than family.

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Niki’s friends were aware of what was happening over her husband Stuart’s illness. She has talked to them about inherited MND because “it’s interesting and it’s part of who you end up being”.

Jade describes how, “when I first found out, it was my friends I leant on for support. Now… it’s not something we all sit and cry about by any means, it’s just something I can mention in passing… So, it’s not an elephant in any room; it’s just life, part of life”. For Kirsty, “it wasn’t something that dominated a lot of my conversations with friends, but they always held space for me to talk about it whenever I needed to”.

One person had a friend who had another genetic condition in her family. She found talking to her friend more valuable than talking to her sibling, who was generally quite different to her. Knowing there are others in a similar situation “just makes you feel less alone”.

The Covid-19 pandemic sometimes made it hard to get support. Louisa said, “I know I can talk to any of my friends, especially my best friends, about what was going on… but I don’t because I can’t see them. It’s not the right time for that stuff”.

Others had discussed inherited MND with friends but didn’t feel a need to talk about it regularly.

Lexi’s friends have been supportive, but she doesn’t want to talk about inherited MND; she’d rather just “enjoy their company”.

I mean we don’t tell everyone that we’ve got this horrendous, disease potentially. I think the people, we have very close friend relationships, we have, in fact both my sister and I have got very similar, if not the same, circle of friends. Our close friends all know and all knew mum and dad, they’ve been friends for years and years and years and they all know the situation. Been very, very good through the whole thing, and we don’t really talk about it. It’s one of these, I don’t want to talk about it and you know, it’s, I’d rather just enjoy their company and enjoy having fun and doing whatever we do together. It’s not something that I bring up in conversation unless you know, something happens and you know, they want to talk about it, but, yeah.

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Georgia Y has found that people rarely understand what inherited MND is, or they want to reassure her that she won’t get it. She doesn’t feel a need to talk to others as it’s not “productive”.

So one of my friends is a physio, a neurological physio, so she works a lot with MND patients, so she knows like how bad it is. And I’ve kind of said to her in passing, like, “Oh, by the way, do you know like that’s what” – like, my friends know that’s what my nan died of but a lot of people don’t really understand what it is, or yeah, just understand the illness or have really heard of it. The Ice Bucket Challenge helped a lot in raising awareness about it, so sometimes I might say, “Oh, yeah, MND, that’s what my nan and great uncle died of, like it’s in my family,” and they’re like, “Oh, what’s that?” and I’ll say, “Oh do you remember that Ice Bucket Challenge that everybody did?” and they’ll be like, “Oh, yeah, is that what it’s for?” Or you say like, “Oh, have you seen the Theory of Everything? Stephen Hawking, that’s what he has,” and people are like, “Oh, yeah.” Although I don’t think Stephen Hawking really helps because it kind of glamorises it a bit so people are like, “Oh, well, it’s not that bad because you can just be like a rich professor and everything will be fine.” It’s like, no. But sorry, I’m getting really side-tracked.

Going back to what I first started talking about, my friend who deals with MND patients, I’ve kind of said to her before, like, “Oh, that’s what my nan died of and I could potentially get it,” and people’s reactions and hers was very much like, “Oh, no, like you won’t get that,” because that’s just what everybody wants to… And I suppose that kind of reflects the attitude that I have, really. It’s just like, “Oh, no, like I’ll worry about that later, it won’t affect me.” But I don’t really talk about it that much with other people just for the same reasons that I don’t think about it that much, because I just don’t think it would be a productive conversation.

 

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As with talking to family, people sometimes worried about burdening friends, didn’t want to be treated differently, didn’t feel others could understand, or didn’t think talking would help. Because of this, not everyone had told friends about inherited MND in their family.

People had a range of views around talking about inherited MND at work. Some people felt able to talk to colleagues, like Karen who worked in social care before retiring, which she described as a “caring profession where we were dealing with human stories all the time”. Kelly appreciated the support of her boss and colleagues over her pre-symptomatic genetic testing process. Paul is happy being open about the family history of inherited MND at work. In his experience, awareness seems to be increasing, with celebrities talking publicly about living with MND.

People also spoke to work colleagues about what was going on in the family because they needed time off, for example to look after a family member living with MND, to attend genetic counselling appointments, or take part in research studies. Louisa felt it was important to tell her boss about her mum’s diagnosis of inherited MND, because of how it could impact her emotionally. She said, “we haven’t discussed it since and that’s fine, it’s just an awareness, so I think that safeguards me working. And I know that because of that I could ring him up… if I felt like that, so that’s good”.

However, not everyone felt it was something work needed to know- they saw it as “private” or “personal” and didn’t want people to treat them differently or make allowances.

Peer support: connecting with others online and in-person

Whether going to support groups (in-person or online), using online forums or social media groups, or attending events and meetings, seeking peer support was met with a range of responses. Some people found these groups helpful in connecting with others and hearing how they approached decisions like genetic testing. They valued being able to find and share information, such as on research developments and opportunities, or issues related to living with MND, including on aids and equipment.

In Sam’s experience, there isn’t much support available for family members living with the knowledge they could develop MND. Facebook groups have been “helpful and reassuring”.

So, there’s obviously a huge amount about living with the disease and – or not a huge amount, but that’s really helpful, the information that exists about living with the disease, and when my family member had the disease, I felt like that was quite well catered for.

But in terms of living with the knowledge, without symptoms… I’m a member of Facebook groups, and those are the only two places that I’ve found that have been – I’ve not actually commented on any of them but if I had a question… they, they’re places that I can communicate with people in my situation. But I think I just found those randomly by, by typing them in, but actually they’ve been very helpful and kind of reassuring.

I wondered what your kind of motivations were for looking for those kinds of support?

I think originally, I think they’re twofold really. I think mainly for information, because actually on the Facebook groups you find out information about new break, minor breakthroughs and new trials that are starting and there is a sort of element of, of usefulness in that regard. And then secondly, it’s also just to feel that you know, to hear stories of people who have got this quite unusual situation that you’re in.

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Inherited MND is a “sensitive” topic in Adam’s family. He tends to talk to people in a similar situation online, rather than causing stress to family members. Although he finds online forums helpful, he says “you have to be quite strong-minded not to take all the information at face value and to explore some of the things people say, but then disregard other opinions that might not be so helpful”.

Adam points out that connecting with others online was a “saving grace” during the Covid-19 pandemic, when in-person events were not happening. Further, online options are convenient for people with mobility issues and carers who may struggle to find free time. Others, however, preferred in-person events. Lizbeth highlighted the value in talking to others: “It’s like when you’re pregnant and you go to an antenatal class and you can all compare swollen ankles”.

People were sometimes interested to get in touch with individuals they had something in common with, such as having the same genetic variant. Liz Y had enjoyed going to a group for younger people affected by a variety of conditions at her local hospice and missed this support when she moved away. Others felt you needed more than a disease in common to build a relationship, such as Alison who became friends with another healthcare professional who contacted her on an online forum.

Even when people used these kinds of groups, or had in the past, they pointed out that there were difficult parts, such as finding it sad or distressing to hear about other people’s situations. Anthony said, “you hear of a family where there’s been like nine cases of MND… I suppose it’s hard, the fact that it could potentially run through the family”. Sam questioned whether this could be “too much” for a lot of people, and Harriet was considering leaving the group she had joined, as it is “not what I really need right now”. People couldn’t always associate with the experiences of others. JW found that others were often angry about poor treatment and support, which wasn’t his experience.

Facebook groups on inherited MND are a good place to hear about research, but Karen doesn’t use them as much as she did when her mum and uncle were alive, as it can be “scary”.

I’m also a member of two groups on Facebook, and I’m not really sure about those really in some ways because my , my family members who’ve had motor neurone disease have now died, motor neurone disease for now is out of my life. So when my mum and uncle were alive I found those groups much more helpful. Now it’s almost like I don’t really want to be talking to people who’ve got motor neurone disease. I know that might sound awful, but it’s like you know, I’m, I just think, “Oh, I’d like to pretend that I’m not you know, there’s nothing affecting me.” It’s quite nice to sort of put it to the back of, of your mind as much as you can.

But having said that, I’m still a member of those groups because one of them is a research group and obviously anything new that comes out, I’m very interested to hear about, any studies or any projects, any research that’s going on, anything that I could participate in.

But you know, you do hear very sad stories on there because obviously it’s all people who’ve got family members who’ve got motor neurone disease and then people telling you that you know, their mum’s died or their brother or you know, they you know, things, new members join and they say things like, “Oh, I’m the sixth person in my family to get motor neurone disease”, so it’s really scary, but. Yeah, so, so I don’t really dip into those groups as much as I did when it was affecting me every day.

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Mary found it helpful to speak to others going through the same thing but stopped using online forums when she found herself getting “a bit obsessed”.

I used to go on the forums and speak to people that you don’t know who are going through what you have gone through, and have conversations. That helped in a way because you could relate, because we were both kind of… whoever you’re speaking to is going through the same thing.

I sometimes get what they call twitches in my arms and then I go into a panic mode.  And I found that other people do as well, and some people have gone for testing or, or things like that.

And then I think you get a bit obsessed. At one point I thought, ‘I’m getting obsessed with this,’ looking it up all the time, reading stuff, and I thought, ‘I can’t do it,’ because then I think it makes it worse sometimes, in a way. So then, I kind of backed off going on them.

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Another difficult aspect of peer support was seeing people with more advanced symptoms of MND. This was the case for people living with MND, carers, and people living with an increased genetic risk. Lizbeth said, “it just makes me uncomfortable… it’s a little bit emotional. It brings back memories… and that’s when I think, ‘Oh, God, could that be me?’”

People caring for a relative with MND had a variety of experiences of seeking support from other carers. Adam connected with others online to get advice on how best to support his mum, who was living with MND. Georgia didn’t go to support groups as she had worried about how her mum, who had struggled to communicate, might react if she took her with her; she would have loved to talk to other carers of a similar age to herself.

Niki and Sheenagh didn’t feel support groups were always helpful.

Niki found she was mostly offering advice when part of a WhatsApp support group. Everyone came with different points of view, and for her it didn’t feel supportive.

It was a WhatsApp group, and but I found myself using that to give information rather than to seek information, if that makes any sense. And as with all support groups, everybody comes at it from a very different point of view, don’t they?  And so there were some people in the group who felt that, you know, it was a privilege to be keeping their loved one going and to be given this task to do, and I didn’t feel that way. There were people who were facing great challenges accessing services and one thought, “Oh my goodness, you know, we’ve got so much and they’re struggling to get even the smallest bit.” And so it ended up for me, anyway, being an unsupportive support group. So I remained with it until Stuart died and then, you know, posted that that had been the case and I haven’t joined one since.

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Sheenagh wasn’t interested in going to support groups for carers when her husband was alive; everyone’s situation is unique and it’s not how she wanted to spend her time.

I wasn’t going to find that useful, my situation was unique, their situation was unique. I wouldn’t have found that useful at all. But also… you’re totally, if you get a minute of free time, you don’t want to go and sit and talk to somebody else about their problems; you want to go and do something that’s going to be uplifting.

So any free time that I did get was walking my dogs, going to the cinema, going to running. It was all about getting some me-time, and the last thing I was going to want to do was sit and talk to other carers, to be honest. I wouldn’t have found that uplifting at all, or helpful, I don’t think. Even when I go to the support groups… believe it or not, support groups are mostly made up of past carers whose partners have gone, so no, I don’t, I don’t find that particularly useful.

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Not everyone felt they needed peer support, either because they had enough support from those around them; didn’t think it would benefit them; didn’t have time or want to spend their time in that way; worried it could be scary or upsetting; or had concerns over being visible on certain platforms. As no one in her family was living with MND, Robyn wanted to put it out of her mind. She pointed out that “other people’s grief and things like that, it’s a lot when you’ve just gone through it all yourself”.

Some individuals we spoke to would like more opportunities to connect with others in a similar situation. Looking back, a few people felt there were points where peer support might have been helpful, including over pre-symptomatic genetic testing.

Looking back, Kelly feels going to a support group could have been helpful, as she might have benefitted from sharing her feelings with people who could understand and had no expectations of her.

It was recommended to me by my counsellors. They wanted me to go to one before they would test me, but I’m not… I’d happily sit and talk one on one with someone, which I had with my counsellor which was great, but I didn’t really want to be sat in a room full of people I don’t know. And the way I compared it to, which was probably really, really wrong, was how you see in American films where they have the AA meetings and they go, “Hi, I’m xxx and I’m an alcoholic”, that’s kind of how I saw it and I was just like, “I’m not going to that, there’s no way I’m going in and just doing that”, so I really just said, “No”.
 
Did you have any particular concerns, or was there anything you think could have been beneficial about going to a support group?
 
To be honest, I reckon looking back that potentially going to a group support thing would’ve been a lot more beneficial because you’re in a room, just you with people, they’ve got no expectations from you, they don’t know you, you can sit there and you can ask these questions you probably don’t want to ask in front of your husband or your mum and you can let those feelings out in a healthy environment. Where a lot of the time I wouldn’t say anything to [husband] about how I was feeling because I didn’t want to burden him.
 
Maybe if I had gone to one or two of those meetings, I’m venting to people who are going through it or have been through it and they understand and they can answer those questions. So, I think looking back I probably could’ve gone, or looked into it some more than I did. It probably would’ve helped me a hell of a lot more.

 

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People sometimes felt this kind of support could be helpful in the future, particularly if they or a family member developed symptoms.

Research in MND: views and experiences

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