Talking about inherited MND in the family: differing perspectives

Talking about inherited MND in the family can be difficult and emotional. Whilst families may sometimes be “on the same page”, family members can also have different approaches to talking about the implications of the condition and their worries and concerns. This section covers experiences of communicating with relatives.

Some people described having open, honest and frank conversations about inherited MND. They felt able to go to family members for support or to discuss anything on their minds.

Karen and her daughter talk about inherited MND frankly and openly; “We don’t sit around crying our eyes out… we’ve got a plan”.

We don’t have very much conversation other than things like we might say flippantly, I might say to her flippantly, “Oh, right, I’m going to do that before I get motor neurone disease”, so things like we talk about travelling or she’ll ask me, “Well why do you want to do that?” or “Why are you, why have you got this?” or whatever. And I’ve told her that I’ve got money set aside for what I might do if I discover that I’ve got it. And, so she knows my end of life wishes and all that sort of thing. We’ve talked about that, in a very sort of, much like I’m talking to you now, in a very frank and open way really.
 
We don’t sit around crying our eyes out or kind of thinking, “Oh, worst possible scenario” blah, blah, blah, we’ve got a plan. We have no plan if she gets it, that’s another thing that we don’t speak about at all, but I will sometimes raise it with her if there’s something that I’m thinking about.

 

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Sometimes inherited MND was discussed “flippantly” or “like it’s everyday stuff”, and at other times involved “long” and “emotive” conversations. Harriet described how “my husband checks in on me and we might have a bit too much red wine and I’ll get teary about it. But I think all probably quite healthy and quite normal when dealing with something like this”.

There are times where inherited MND is in the front of people’s minds and might “crop up” in conversation. This includes over the illness of a family member, when taking part in research, when seeing something about MND in the media, or when noticing possible symptoms.

Although they “surface talk” about inherited MND, Mary and her sister tend to keep their feelings to themselves, because “we don’t know how to deal with it”.

We talk surface talk, kind of, now and then, very occasionally. Usually if it’s – like the rugby player the other day, the other week, and my sister says, ‘Oh, did you see the news with the rugby player?’ and I says ‘yeah’, she went, ‘It reminds you of dad, doesn’t it?’ and I said ‘yeah’. That’s kind of as far as we get, we don’t really go any further unless one of us has a weird symptom and we’ll say, ‘Do you think it’s that?’ and she’ll say, ‘No, it’s not,’ and then that’s the end of that conversation. I suppose it’s because we don’t know how to deal with it so we just keep it to ourselves.

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Family members may have conversations around things like pre-symptomatic genetic testing and options when having children, both to share information and discuss their own choices. Whilst some people found it helpful to discuss decisions on pre-symptomatic genetic testing, others weren’t sure of their relatives’ views and decisions, or didn’t feel they could ask. Equally, people sometimes felt it was important to share information and discuss options when having a family with their children and other relatives, but not everyone had had these conversations. Some people felt it wasn’t their place to ask questions or share their opinion.

Kelly appreciated her cousin, Jade, talking to her about genetic testing and options for starting a family, which allowed her to make an “informed decision”.

A lot of it was my cousin. Because she had been to see her gene counsellor before I’d been referred from my doctor, she was actually quite good. She, she rang me more to say, “Look, I’m ringing to give you an option, you know, I’m going to give you an option so you can make an informed decision”, and she basically told me a brief insight to what her counsellor had told her. Like she knew at the time she couldn’t be tested because she was pregnant with her second child, so hers was slightly delayed. But she, she kind of made me feel more at ease about everything, you know, that it isn’t a death sentence if you get it done, you know, there are, there are ways that you can still have a life and, you know, it’s not going to get you immediately if you do have it.

Then she kind of said to me, she went, “Look, just remember I can’t make, I can’t go back in time and make a decision now in regard to my children.” She already had one and she was pregnant with the other. She went, “Whereas, you know, if you do have this gene you can, you can change the outcome of your children’s lives”, which I hadn’t really thought about at the time until she told me she, how much guilt she was having because she, she didn’t give her children a chance to be without it. But obviously, you know, we didn’t know about it at the time.

She knew I, me and my husband were looking at potentially starting a family, so she, she kind of done the right thing and allowed me to make a more informed decision, whereas, which she didn’t have, which I think was probably a really, really good thing she did do.

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Whilst people generally respected their family members’ views and decisions about pre-symptomatic genetic testing and having children, it could be difficult when they made choices they didn’t agree with. One person said, “My cousin… has chosen not to have the [pre-symptomatic genetic] test… because she just couldn’t live with the answer if it was positive, and I fully respect that… However, there’s part of me that’s screaming at her, “Don’t have children until you know.” … But it’s not for me to get involved and try and sway anyone else’s decision”.

Even where individuals are generally open, there might be certain things that are upsetting to discuss or think about, such as the possibility of children being affected. As such, people might be selective about who they discuss particular topics with. Lizbeth explained how she had “informative” conversations with her children, but “if I read something on the internet that made me think, ‘Oh, God’, scared me or gave me hope, they wouldn’t be the first person I’d go and talk to about it”.

People had different sources of support around inherited MND; some valued talking to people in a similar situation, whether other family members or people online, yet others talked to the other side of their family who weren’t personally affected, or friends.

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.

I know the way that it affects intergenerationally, so it’s more the worry of how many of us could potentially develop it, and I think a lot of people are quite sensitive to the topic. So I think I only really engage with individuals who are prepared to talk about it. I don’t try and push it on them. And generally, it’s quite futile to do so anyway because it gets a very emotional topic and they’re not, they’re not in the know, so it’s not, there’s not too much point in doing it and it just causes stress. So, I tend to just kind of talk to professionals or people who are in, a part of the community who are willing to talk about it.

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For some people, it could be hard to go to family members with their worries, particularly where they had their own concerns to deal with. Louisa didn’t want to “burden” her husband with worries around inherited MND, especially after his own health concerns, and tried to coach herself instead.

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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Lexi had a few conversations with her mum about the implications of inherited MND for herself and her sister, but focusing on this felt “selfish” when her mum was living with the disease.

I remember having a conversation about it with her and I kind of thought it was all, and I was like, “Oh, god mum, what have you done, you’ve passed this awful disease on to us” you know, jokingly, and she’s like, “I wouldn’t wish it on my worst enemy but you’re going to have to face the fact that you may have this disease”. And that was really, I’m sure she felt awful about it herself, but she would never have, she didn’t say that to us. She wouldn’t want anyone to have MND, no-one would.
 
But we never had a long conversation about it and what it meant. Not even to [sister], my sister, it was very much, especially as she had a son and everything like that. As soon as we had that conversation it was very much, “It doesn’t matter, we’re not getting tested”. So it kind of just… and we were very, and still are very happy with that decision. And, so she was just like, “Okay, fine”, it wasn’t, we didn’t make it…
 
At the end of the day, she was the person that had MND, we didn’t know, we still don’t know what’s going to happen with us, so we focused on her not on us. I guess we probably thought it was a very selfish thing to have a conversation around as well because at the end of the day she’s the one that’s going through the hell of this awful disease, we may not even get it, and we didn’t want to make her feel even worse than she already was, so.

 

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Whilst some people described having frank conversations, people diagnosed with the disease could find it upsetting to acknowledge or talk about the possibility of future generations being affected. Because of this, not everyone chose to bring up the hereditary implications. Talking with affected relatives could also be difficult because of communication issues and was particularly challenging where a family member also had a diagnosis of frontotemporal dementia (FTD). Georgia Z’s mum was diagnosed with MND-FTD, “She was understanding that she had an illness but didn’t understand… that it could pass. I don’t think she even had the capacity to think about me, which is fine because that was the illness”.

Since his wife’s death, JW has had conversations with their children about their worries and decisions, but he generally feels, “It’s not worth talking about much because there’s nothing you can do about it”. For JW, “our coping strategy most of the time is to ignore a very large elephant”. Georgia Y also talked about ‘compartmentalising’ as a way of coping.

Georgia Y doesn’t let inherited MND affect her life. She is happy to talk about it when her mum needs support, but after that will “put the lid on the box”.

So I would say aside from obviously like losing my nan and my great uncle, which was obviously really upsetting and whenever you lose someone, you miss them, I would say that it doesn’t affect my life at all because I don’t let it. I think if I, like, sometimes I get into conversations with my mum about it when she needs support, but I’ve managed to create quite a good- well, I think it’s good, other people might think it’s unhealthy- but a coping mechanism of just like putting it in a box and being able to talk to her about it. But once that conversation is over, like, put the lid on the box and be done with it, sort of thing. So I would say that it doesn’t affect my life, but that’s because I’ve taken a really like hard line in not letting it.

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Where MND was in the “background”, it also didn’t come up in conversation very often. People talked about how it wasn’t relevant at present, there wasn’t much to say, or there were other things to focus on. Maggie said, “I think we all feel much the same way, if it happens it happens and then we’ll talk about it but let’s not talk about it in advance”. Other people felt it might become a bigger topic of conversation in the future, if family members were considering pre-symptomatic genetic testing, starting a family, or if a relative developed the disease. Helen felt it would be “pretty miserable” to talk about it all the time. Paul described his approach.

Talking about inherited MND comes in “peaks and troughs”. Generally, Paul’s family have other things to focus on.

When we’re talking now we’re really fundamentally talking about what’s happening with the children and what’s happening with my dad, respective partners, rather than actually what MND means for us. You may think it should be a bigger part of our lives, but actually it’s not. There’s lots and lots and lots going on and which we enjoy, particularly you don’t want to be thinking about that, you want to be enjoying your family growing up and supporting them when things aren’t going so well, and enjoying their successes, and that is definitely what we’re more focused on than almost a clinical dissection of what having an MND gene might or might not mean for us.

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“There isn’t anything more to say” was especially true when a gene variant had not been identified in the family. In such cases, family members couldn’t learn more about the particular genetic variant or consider options around pre-symptomatic genetic testing or having genetic testing before or during pregnancy. Alison said, “if I haven’t got that gene, then there’s no information to disseminate to the younger generation at the moment”.

In some families there were people who took the approach of “burying their head in the sand”. Individuals we interviewed described how inherited MND was a “taboo subject” for certain family members, who didn’t want to talk about it, boxed it off, or ignored it. William described how, “It’s not as if it’s a completely forbidden subject, but it’s just one that we choose not to bring up”. This approach could be difficult for those who wanted to talk about how they were feeling, though generally people felt it was important to respect such attitudes. One person talked about how her brother didn’t want to engage in a discussion about inherited MND. She said, “I don’t think, ‘Oh, he should be dealing with it the way I am’…. just think everybody should deal with it in the way that they can cope with it. It’s a massive thing and I just don’t think there’s a right and a wrong way really”. Not being a “close” family also meant that inherited MND was rarely spoken about. This might be because the family was geographically spread out, had drifted out of contact, or fallen out.

In such cases, knowing whether to talk to more distant relatives or extended family about inherited MND could be a dilemma, and people sometimes felt unsure of what their relatives knew already or whether sharing information was the right thing to do. Sharing results of genetic testing after a diagnosis of MND in the family was something some people struggled with, particularly where such information would reveal to relatives that they could be at an increased chance of developing the disease. Talking to children about inherited MND and genetic risk was also difficult for some people.

Whilst inherited MND could be difficult to deal with for families, and cause tensions, some people felt their experiences had brought them closer together. Where a family member was living with the disease, families sometimes had to communicate, and spent more time together than they otherwise might have. People described supporting and being there for one another, appreciating each other and seeing each other in new ways. Kelly said, “I think we all feel a lot closer than normal because when you go through something like this, it’s your support group around you. If anything, all it has done is brought us all incredibly closer.”

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