Adapting to life with MND: Attitudes towards and impact on life

Living with MND, whether an inherited form or not, means adapting to changing symptoms and the progression of the disease. We spoke to people about how this impacted them. This page covers:

  • Attitudes to life, priorities, and perspectives
  • Working after a diagnosis of MND
  • Daily life and leisure activities

This section focuses on living with an inherited form of MND, but you can see people with various forms of MND talking about their experiences.

Attitudes to life, priorities, and perspectives

Individuals described how their experiences of living with inherited MND shaped their priorities, perspectives, and attitudes to life. People we interviewed often focused on the positives. Liz’s philosophy was to live with MND not die from it. This approach was especially important to her given she had an inherited form of the disease.

Liz X tries to show her children that having MND is “not the end of the world”. If they develop the disease in the future, she wants them to have positive memories.

For John, “there’s plenty of life to be enjoyed” whilst living with MND. He is reassured by the technology available to connect with others and the world as the disease progresses.

After his diagnosis, Hugh’s priorities were different to how he imagined; instead of producing work, he wanted to keep experiencing new things. He felt disappointed that the Covid-19 pandemic had limited his ability to spend time with people he cares about and do the things he enjoys. For Dani, “you look at life through different eyes”:

Having a terminal disease has shaped Dani’s attitude towards life. She takes the approach of focusing on what she can do and making memories.

Ken and Chris felt it was important to have goals and things to look forward to, such as family milestones and holidays. They emphasised living in the moment. For Liz X, her children gave her a reason to keep going. She focused on being there to support them through their education. Other people had other strategies and approaches which helped them.

Focusing on the bigger picture gives Liz Y a sense of calm. She feels that without disease, she wouldn’t be so conscious of the richness of life.

For David, it is important to “keep challenging” the disease. He encourages others to try and find something in themselves to keep going.

Despite trying to maintain a positive outlook, inevitably there were times when people felt frustrated or upset. Dani sometimes felt fed up with her increasing disability, especially during the Covid-19 lockdown. She was prescribed a drug to treat anxiety when she was first diagnosed. Although it took some time to work, she described it as “the best thing I ever did”. Liz Y had depression after her diagnosis. Taking medication helped her to find a turning point.

Concerns over family members developing MND were an ongoing worry in many cases. It could also be difficult to see other relatives with the disease. Liz X said, “it’s like living with a time bomb… each time another member of my family is diagnosed it sends shock waves out… Then when my cousin was diagnosed, I feel bad that she has been so rapid… it doesn’t seem fair that I’m still here and she so obviously isn’t going to be for much longer”.

Working after a diagnosis of MND

Being diagnosed with MND sometimes meant facing decisions around work.

Moving to part time and annualised hours gave Alison more free time and flexibility. She appreciated the support of her employers, which enabled her to work for 5 years after her diagnosis.

Alison and Ken used the Access to Work scheme to travel to work. When she gave up her job, Alison started volunteering with a health charity, which enabled her to use her skills as well as providing social contact and support. Liz Y was grateful that her boss encouraged her to pick up occasional projects after she gave up her job. This was important for her sense of worth and contact with others.

Liz X initially reduced her hours as a classroom assistant but decided to leave her job when mobility became difficult. Having to accept living on benefits was hard. Although she worried what she would do with her days, she started doing a lot of volunteering and sometimes wondered “how on earth did I find the time to go to work?”

Sarah retired earlier than she would have liked to but felt lucky to be able to take her pension at 55.

Daily life and leisure activities

For many people we interviewed, it was important to find ways to keep doing daily activities and hobbies as their symptoms progressed, whether that was experiencing the outdoors, spending time with friends and relatives, or going on holiday. Liz Y has always enjoyed outdoor activities; now, she finds she is content to sit in the garden and “be still”. Ken can no longer do the gardening but tells his wife Chris how he wants it done. David has built raised beds and accessible paths to enable him to keep enjoying his garden as he becomes less mobile. He found it hard to come to terms with being unable to do certain things which he sees as part of his identity, but he has tried to adapt.

David’s illness has made him re-think who he is, but he plans to find ways to continue doing things that are important to him, such as learning to sail.

Other people also spoke about taking on new activities. Dani tries to maintain her fitness by cycling on her exercise bike, which she does virtually with a friend.

Ken and Chris emphasise humour and leading a “normal life”. For example, Ken has a PEG but still sits at the table and eats with his family. However, communication issues can make things difficult.

Ken found losing his voice to be a “barrier” in social situations, as it is difficult to keep up with conversations whilst using his speech software. Staying in touch by email is important.

Adapted vehicles and mobility equipment were important in enabling people to stay mobile and enjoy the outdoors. Hugh characterised his experience as a “battle” to keep mobile and independent, and a “race against time” to put things in place.

As his needs have changed, Hugh has bought an electric trike, an all-terrain wheelchair and an off-road mobility scooter, which enable him to enjoy the coast and countryside.

Alison and her husband bought a caravan soon after her diagnosis. This allows them to travel, something they both enjoy, whilst knowing that their accommodation will be suitable for her needs.