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Care, support and living well with inherited MND
People living with MND have a variety of support needs, and experiences of care. This section covers: Adapting to symptoms: home adaptations, aids and supports...
For most people, knowing that they have an increased chance of developing inherited MND in the future has some level of emotional and psychological impact. This section covers:
Living with an increased risk of developing inherited MND means living with multiple uncertainties around the future, including whether symptoms will develop; when; what symptoms will develop; how they will progress; and whether there will be a treatment or cure by this time. People who had not had pre-symptomatic genetic testing also faced the question of whether they had inherited a gene variant linked to inherited MND in the first place.
Some people found hope in knowing that their future could map out in many different ways, like Anthony who said, “you have to be positive in life…and not dwell on something that may or may not happen”.
Others found it more difficult to live with uncertainty, like Liz Z who described how, “it’s really a wait and see, which can be a bit like a sword hanging over your head”. Calum said, “the other flip of the coin is that you could never get any of it, so if you’re worrying about something that you’re not going to get like it’s just ridiculous, it just feels horrible”.
Not everyone felt worried about the possibility of developing inherited MND in their day-day life. However, it could be hard to think about the future. Liz Z explained, “it’s like having just a little thought at the back of your mind that challenges you when you’re planning for the future… almost like something’s sitting on your shoulder”.
People sometimes found it difficult to consider that they might not have the future experiences they had hoped for and imagined. This included individuals who did not know whether they had inherited a genetic variant associated with inherited MND, like Mary and Liz Z. Mary sometimes questioned if she would be there to meet her grandchildren. She said, “you have to assume you are, don’t you?”. Liz Z spoke of her fear of not being around to see all the things that her daughter achieves. Lizbeth talked about finding out she carries the C9orf72 gene variant as a “loss”.
Other people felt worried about the possibility developing MND, fears which were sometimes based on seeing relatives with the disease. Lillian said, “I’m not fearful of it, I’m fearful of suffering”; seeing her dad receive poor care has made her “terrified” of the disease.
For younger people, finding out about inherited MND could feel like a barrier to achieving milestones including meeting partners, marriage and children. Adam said, “you just assume that you’re not going to get those chances.” Calum felt less secure in his relationship and described how “you feel very vulnerable that people will walk away from you”. Losing his own father in his early 20s, he felt more rushed to have a family himself because he didn’t want them to lose him at a young age. Before finding out that she had not inherited the C9orf72 gene variant, Kirsty found it hard to think that having a family might be more complicated than she had previously imagined.
Lots of people felt reassured by research progress, like Harriet who said, “If that wasn’t happening I’m sure I would feel differently…it’s a comfort and it’s a hope”.
For some people we spoke to, their biggest concern was the possibility of their children being affected. Louisa and Jade felt a sense of guilt at the thought that they could have passed on a gene variant linked to inherited MND. Although people were worried about their children, they reminded themselves that their children might not have inherited the genetic variant. They often felt hopeful that there would be a treatment or cure to prevent the disease by the time their children were older.
Some people felt worried that their children would have to care for them, especially when they had cared for their own parents. Before she received her negative genetic test result, Maggie was “much more worried about developing it myself on their behalf than on mine, because having looked after my mother and having looked after my brother, I don’t want them to have to look after me”.
Whilst parents worried about their children, it could also be difficult for children to think about their parent being affected.
Like other people we spoke to, Kirsty’s fears were based on experiences of seeing family members with the disease. She explained the impact of visiting her uncle, “I had a visual I suppose, I had a real life example of what the illness does to a person… before… it was just sort of abstract imaginings and now… I could actually imagine what it would be like for my mum”.
People also worried about siblings and other relatives. Because it was the men in her immediate family who had been affected, Robyn worried more about her brothers than herself.
Although most of the people we spoke to were living with the knowledge that they themselves could develop inherited MND, family members also lived with some of the same worries and emotions around the possibility that their loved ones, such as partners or children, could become ill. For Helen, whose husband doesn’t know if he has inherited the C9orf72 gene variant, “it’s something that both of us will always think about”. Partners and other relatives were often a valuable source of support.
Worries over the inherited MND sometimes contributed to psychological and physical symptoms. Some people we spoke to described having periods of feeling anxious or depressed, and others had trouble sleeping or panic attacks. People used words like “hopelessness”, “fear”, and “overwhelming”, and a few people questioned “what’s the point of going on?”.
As William points out, there is a “wider context” in which people are affected by inherited MND; other circumstances and experiences are often involved. One person described how knowing she could have inherited a gene variant linked to inherited MND had made her existing mental health struggles and eating disorder more difficult to deal with, because this situation was “so completely out of my control”.
There are times where worries about inherited MND come to the surface, and the mental health impact of inherited MND can change over time and with changing circumstances. Sam felt “anxious and depressed” for a brief period after finding out about inherited MND in the family. However, over time they got used to this information and back to a place of being able to live in a happy and fulfilled way. The time after receiving a positive pre-symptomatic genetic test result was particularly difficult for Lizbeth, and she tried to end her life several times. Since then, she has sought professional support and managed to find a way to move forwards with her life.
People had different ways of coping with worries around inherited MND, including through counselling and talking therapies. Some of the individuals we spoke to felt there needed to be better support for people in coping with the emotional impact of living with an increased genetic risk of MND.
Whilst some people we interviewed to didn’t feel that their experiences of inherited MND had changed how they thought about themselves, others described both positive and negative impacts.
Since finding out about inherited MND in her family, Kirsty has learnt that she is stronger and more able to cope than she thought she would be. For Louisa, going through the grief of her mum’s illness and finding out that she could also carry the C9orf72 gene variant has affected her confidence a bit. She sometimes feels like “a lesser person than myself”.
Adam, who also doesn’t know if he has inherited the C9orf72 gene variant, has found it troubling to think of his body betraying him. Jade described how finding out she carries the C9orf72 gene variant has reinforced her sense of being “flawed genetically”, but she tries to live by the motto “be perfectly imperfect in your own way”.
Louisa was more “reckless” after finding out about inherited MND in the family, drinking more regularly and being less thoughtful about spending money. However, it only lasted a few weeks until she thought to herself “don’t be stupid, sort your life out”. Calum still has a desire to live and achieve his goals but is more willing to take risks and no longer values his life as he did before he knew he carried the C9orf72 gene variant. Lizbeth, however, values her life more than she used to before she tested positive for the C9orf72 gene variant, and is more cautious about the way she lives her life. She says that inherited MND “runs through me like Blackpool rock”. She sees it as part of her story, but it doesn’t define her. Other people also talked about how their experiences of inherited MND have affected their attitudes to life.
People living with MND have a variety of support needs, and experiences of care. This section covers: Adapting to symptoms: home adaptations, aids and supports...
Some people described times where they were more and less preoccupied by thoughts and concerns around inherited MND. This section covers: “It’s a rollercoaster”: times...