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
  • Experiences of receiving care
  • Experiences with healthcare professionals
  • Treatment
  • Planning and perspectives on end of life

People we spoke to were affected by inherited forms of MND but faced many of the same issues as others diagnosed with MND. See more experiences of living with MND, including around care, support and treatment.

Adapting to symptoms: home adaptations, aids and supports

Living with MND means adapting to a range of symptoms, which may affect mobility, speech, swallowing, and energy levels. A few people we spoke to thought that there had been changes in their memory and thinking, though generally this was felt to be mild. David emphasised that even where MND runs in the family, everyone still has a unique form of the disease, which progresses in its own way.

People spoke about making or planning adaptations to their homes to allow them to live more comfortably, safely and independently as their symptoms progressed. This included making the home wheelchair-accessible, converting and adapting bathrooms and bedrooms, or putting in lifts. John and David emphasised planning in advance and making adaptations early.

Having seen his mum living with MND, John started organising adaptations to his home soon after he was diagnosed. His approach is to stay “ahead of the game”.

Equipment and aids were also important in supporting people with things like personal care, eating, speech and mobility. People sometimes paid for aids and adaptations themselves, and others received them through the NHS. A few had received financial support and grants. John used an online forum to learn about what equipment others had found helpful. He was loaned an eye gaze tablet before he lost his voice to familiarise himself with the technology. However, accepting these changes was not always easy.

Stuart was resistant when aids and adaptations were suggested, but once in place he found them useful.

Some individuals we interviewed used a wheelchair, including Hugh who felt this gave him independence around the house. Liz Y left it quite late to get a wheelchair but found that it “wasn’t a big deal” and gave her the freedom to do things she hadn’t been able to do. Liz Z found that people treated her differently when she used her wheelchair. Getting a scooter gave her “a whole new lease of life”.

John and David were both reassured by the technology available, which is more advanced than when their parents were affected. John said, “having watched my mother go through it, there’s probably never been a better time to have MND than now, and hopefully it will get better in the future”.

Experiences of receiving care

Care needs for people with MND vary widely. Dani and Hugh live alone, and at the time of their interviews did not have regular professional or informal care, though before the Covid-19 lockdown they found having cleaners helpful. Dani is grateful that she can still manage by herself, as she does not want her family to have to care for her. Other people also acknowledged that providing care can be demanding on family members. From past experience with his own mum, David has tried to help his family understand what caregiving involves, and encouraged them to seek support, including through joining a support network for carers.

As a teenager, David found caring for his mum to be emotionally and physically draining. He does not want his family alone to be responsible for his care.

As symptoms progress, people may need increasing care. Some individuals were supported by their partners, and others had help from other relatives, like Alison whose sister provided respite care so that her husband could take a break. Receiving care from family members can make relationships stronger but also impact people in negative ways. Caregivers also share their experiences.

For Liz Y, receiving care from her husband negatively affected them both; having professional care helped them “re-establish that normal relationship”.

Like Liz Y, others also had professional care, either funded privately or through social services.

Having seen his sister care for his mum, John knew it was too much for one person. He now has professional carers to help take pressure off his partner.

Although people we spoke to valued having professional help, continuity of care could be a problem, and it was sometimes difficult having different carers who each needed to be shown what to do.

Experiences with healthcare professionals

Depending on their symptoms, people with MND may have contact with a range of healthcare professionals and services. People often mentioned positive experiences of receiving support. David found it was timely and right for the needs of his family. Ken and Chris felt it was well coordinated and appreciated healthcare professionals being kind.

Alison valued having a GP and specialist nurse she could go to with questions; if they didn’t know something, they would get back to her. John found his MND specialist nurses particularly helpful in ensuring he was seen by the relevant departments, and Hugh’s Macmillan physiotherapist helped him navigate the health and social services support available. Others appreciated having physiotherapists and occupational therapists who helped them access equipment efficiently.

For Liz Y, it is the occupational therapists who make a difference to her life. She relies on them to suggest aids and equipment before she might want to think about these things.

Other people we spoke to were in contact with their local hospice, which offered a range of support including things like massage. Liz Y appreciated how her hospice took a more holistic approach to care and well-being. John and Ken valued the support of the MND Association, and Dani had a good relationship with her MND Association visitor, who she could go to with any problems.

People we spoke to also described having negative experiences. Some people were disappointed and frustrated by delays in accessing services. Sarah felt that she should have been seen and diagnosed more quickly, so she could have started taking riluzole sooner.

Hugh feels angry that he was not recommended earlier for non-invasive ventilation. This meant he was unable to make the most of the time when he was still mobile.

A few people felt particular healthcare professionals had communicated in an insensitive or dismissive way. Alison stressed the importance of seeing the whole person.

Alison has Marfan syndrome and suffers with pain. She felt her consultant couldn’t see “the whole patient” when she tried to talk about her experiences.

Alison also spoke about her experiences of going to the MND clinic. She could understand why some people found it upsetting to see people with more advanced disease. She would like to see a tier system where people are given an appointment time depending on their progression.

Dani would like to see more support for people at home, and Hugh has found coordination between different departments to be challenging. Although Liz felt her care had been great, she found it quite “intensive” having to meet different healthcare professionals and tell them her story.

Some of the people we spoke to had applied for or were receiving benefits. Sarah and David had been encouraged or supported by their nurse through the application process.


Currently, riluzole is the only drug licensed to treat MND in the UK. Sarah was shocked that 32 years after her dad was affected, there were not any more significant treatments to treat the disease. Some of the people we spoke to took riluzole, but not everyone chose to, including Liz Y who wasn’t sure she wanted to “prolong things”.

As well as riluzole, David takes two drugs that are currently undergoing clinical trials to assess their safety and effectiveness in treating MND, though he is not himself a trial participant. Because they are used to treat other conditions, he has been able to source these privately and from his GP (though this is generally not recommended). Dani is involved in a drug trial targeting the SOD1 gene variant.

Some of the people we spoke to had also tried alternative or complementary therapies to support health and alleviate symptoms, including aches and pains. This included taking vitamins and minerals, and particular foods such as turmeric. David was being supported by his son to try a keto diet. One participant had tried marijuana but didn’t find it helped. Liz Y found that relaxation, belly-breathing, and using aromatherapy oils helped when she felt she wasn’t getting enough breath.

Planning and perspectives on end of life

Some of the people we spoke to talked about their views on death and dying. Hugh was reassured to know that there are palliative options to make dying less distressing. This “makes it easier to focus on making the most of the time I’ve got left”. He and Sarah both described writing down their future care and end of life wishes.

Hugh has written an expression of wishes and a do-not-resuscitate order. He has discussed this with relatives, so they are aware of what he wants.

Sarah has written a Do Not Resuscitate order. Her decision was informed by caring for her father, who died of MND, as well as her experiences as a children’s nurse.

David also discussed end of life with his family, though recognised that thinking about these things was difficult for them. John has arranged to donate his brain after death, something he sees as “no skin off my nose”. Learning what would be involved was quite a lot to take onboard, but it doesn’t bother him to think about these things. He has explained the process to those responsible for his care, so they know what to do. People who had an increased risk of developing MND also talked about preparing for the future and end of life planning.