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”.

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”.

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.

Louisa manages her thoughts and fears around inherited MND by focusing on the things she can fix, like helping her dad to care for her mum. Exercise helps take her mind off things.

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”.

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.