Inherited motor neurone disease (MND)
Ways of coping with worries around inherited MND
This section covers how people coped with worries around inherited MND, including:
- Attitudes and perspectives
- Practical strategies and sources of support
Attitudes and perspectives
People living with an increased chance of developing inherited MND in the future had different ways of managing the emotional and psychological impact of this knowledge. Some people took the approach of worrying about it if it happens and emphasised that they were healthy now. The uncertainties of whether they had inherited a gene variant linked to inherited MND (for people who had not had pre-symptomatic genetic testing), if they would develop symptoms, and at what age were reassuring to some. People sometimes reminded themselves that symptoms often develop in mid-later life, and that any changes would happen over time.
Jade points out that life is unpredictable, and no one knows when they are going to die. The possibility of developing MND doesn’t scare her because “it hasn’t happened yet”.
Jade points out that life is unpredictable, and no one knows when they are going to die. The possibility of developing MND doesn’t scare her because “it hasn’t happened yet”.
I guess it doesn’t scare me because it hasn’t happened yet. I can’t sit here every day of my life and think, “Oh my god, I could die of this,” because we could all die tomorrow. I’ve got friends that have died in car accidents and all sorts. They’ve been very, very young, and it’s just been very sudden and very out of the blue and it’s like, “Oh my god, that person should still be here and they’re not,” it’s horrific. But you can’t get up every day and think, “I’m going to die today,” you just can’t. And you can’t get up and think, “I’m going to get symptoms of motor neurone disease and die today,” because it wouldn’t, just wouldn’t happen like that. You have to live every day as though it’s a brand new day, the sun will come up tomorrow whether you want it to or not, and every day is different but, you know, every day could be the day you die because you just don’t know.
Other individuals worked hard to “compartmentalise” and get to a place where worries stayed in the background. Georgia Y said, “sometimes I get into conversations with my mum about it when she needs support… But once that conversation is over, 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 hard line in not letting it”. Other people talked about “getting on with it”, but that wasn’t always easy in practice. Although she points out that everyone deals with things differently, Kirsty sometimes found it difficult when other family members seemed to be coping better than she was. She said, “I would sometimes feel like I had to sort of try and rein my emotions in a little bit”.
Some people were quite fatalistic about the future and took the approach of “what will be will be”. Maggie had taken the approach of “…there’s nothing you can do that is going to change anything so you may as well just get on with things”. Liz Z’s job as a nurse had helped her recognise death as something that happens to everyone, “if one thing doesn’t get you, something else will… working with my patients currently has actually helped me to come to terms with that and not dwell on it as being a potential cause of my death”. Harriet’s views were shaped by her experiences over her mum’s illness.
Although it’s a “nasty” way to go, Harriet remembers how her mum was able to have a good life and death with MND. Most of the time she feels “if that’s my fate, that’s my fate”.
Although it’s a “nasty” way to go, Harriet remembers how her mum was able to have a good life and death with MND. Most of the time she feels “if that’s my fate, that’s my fate”.
My best mate’s a GP and she’s convinced that I’m not dealing with this properly [laughs]. And she’s convinced that I need to see a counsellor and I’m like, “Why do you say that?” she’s like, “Because you’re fine”, and I was like, “But why wouldn’t I be fine?” because rationally I do feel fine about this. Yes, I have the odd little like - but it’s not like I then sit for the, you know, I dropped something two days ago, it flashes, it doesn’t linger for any great length of time, and it’s certainly not debilitating so emotionally. So I do feel completely equipped to deal with life [laughs]. And I can see, I can see that possibly changing as I get nearer to my 60s and things aren’t moving as well as I thought they were going to move [laughs]. And I might fear for myself a little bit. But I have a fantastic role model in how my mother dealt with this disease and I will, if that’s my fate, that’s my fate.
I do, there is a certain feeling of, you know… oh, I do not mean to sound cavalier at all about it, but we all do have to die of something and it’s, yes, this is a particularly nasty way of going but we were all able to tell her how much we loved her and she got to see a lot in that two years and wasn’t in pain. You know that’s… illnesses can have such dreadful pain with them and that’s a small blessing I think of MND. I, you don’t hear much about people having pain with it. So - maybe discomfort, sure, but it’s, yeah, I think that’s a small blessing to it.
Staying positive was important for Anthony and Richard. Richard saw a neurologist when he was worried about possible symptoms, and talking with him was “quite a defining moment in terms of how I’ve got my head round it all”. He explained, “the language he used around, by default the human body is wired to be positive and to recover and to move forward and again, they were invaluable words that I’ve tried to apply”.
Other people focused on maintaining a positive attitude to life, and emphasised making the most of every day, living in the present, and being grateful for what they had.
Practical strategies and sources of support
Some of the individuals we interviewed had practical strategies for managing their thoughts and concerns around inherited MND. Kirsty tried to focus on everyday life and “immediate” things like work, rather than letting worries “crowd in”. Keeping busy also helped, and people sometimes found exercise took their mind off it. Louisa tried to focus on the things she could control.
Other people emphasised support from others in coping with worries. This included talking to people around them, who they could trust and who could understand. Louisa found this difficult during the Covid-19 pandemic, as she wasn’t able to meet friends as she usually would have.
Kirsty has valued being able to share her fears and concerns around inherited MND with her sister. She emphasises having “somebody that you can just be scared with”.
Kirsty has valued being able to share her fears and concerns around inherited MND with her sister. She emphasises having “somebody that you can just be scared with”.
I feel like there’s no right or wrong way to feel. And to find people or a person, you need to be able to talk to somebody, and if that’s not within your family who are immediately affected, you know… it’s not something that you can just brave through, I think. As practical as you might be, or as you can be, you try to be really positive about things, but I think there will definitely be, I’m sure everybody will have a moment where they will feel overwhelmed by it, by the enormity of it and that’s completely normal and completely okay.
I think it’s important that you have somebody that you can just be scared with, if that makes sense, that you can just be really honest about how you’re feeling, because I think, especially when you’re the person, it’s actually happening to your family member and not to you, I think there’s a sense that you feel you need to be strong because it’s not happening to you, it’s happening to them.
So, I certainly felt like I always needed to be strong for my mum, around my mum. But I had my boyfriend, I had my sister who I could then say, “I’m not feeling strong at all, I’m actually, I’m terrified” and if I hadn’t had that then those sorts of emotions probably would’ve imploded.
A few of the individuals we spoke to had sought professional support to try and better manage how they were feeling, including counselling and therapy. Some people felt that there needed to be better support for family members in coping with the knowledge that they could have an increased chance of developing MND in the future. They gave messages to healthcare professionals on what could be helpful.
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