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.

But I’m also aware that I’ve got to be as positive as I can, because I want the children to have positive memories of MND, not the negative one that I had originally. Because God forbid if one day one of them develops it, I don’t want them to then think, “My life’s over.” I want them to remember that I’ve abseiled off a building with MND, I’ve met Cliff Richard with MND. I’ve done a lot of things that I would never have done previously. I’ve done the Great North Run. And I’ve tried to let – and we have a laugh. I try and – it’s the most important thing that life goes on, it’s not the end of the world, and try and give them as positive an outlook as I can.

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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.

I think really that… having MND isn’t the end of the world. There’s plenty of life to be enjoyed while you’re going through the process. Okay, so the end stages aren’t that pretty, but most of the lead-in, you can live your life. And with technology, particularly with eye gaze tablets, you can stay in touch, you have machines speak for you, it’s, that’s where the difference with my mother is really pronounced. I was, I’ve been loaned an eye gaze tablet, I’ve been practicing using it so if I can’t type in a keyboard or tap at an iPad, I can talk through a computer, watch films, read the news just with my eyes, which makes later stages less of a big issue.

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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.

Attitude to life, I just… yeah. Well, I think anybody with a terminal disease, who’s confronted with having a terminal disease, looks at things just so differently. It’s like people worry about stupid things that just don’t matter, you know? And so yes, I have, it has changed my attitude to life. Yeah, just you look at life through different eyes, which is good, you know? It’s good.

Has it changed like your priorities then, maybe? Or…

Yeah. And I listen to people moaning and groaning and think, “Oh, for god’s sake. Get on with it” [laughs]. But I’m very much a get on with it sort of person, maybe that’s a trait of being a Kiwi, I don’t know. But you know, don’t sit around too long moaning and groaning about what you can’t do, remember what you can do, and you know, make memories and… oh, I’ve been on a cruise up to the Northern Lights, that was in my wheelchair. There’s lots you can do. A lot of people don’t have enough time when they’ve got a terminal disease, to get it all in. I’ve been really lucky. I was very lucky to get on this trial.

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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.

Yeah, I’m, I was brought up Church of England and was in the church choir. And that was a very strong – my parents have both got very strong faiths. But I don’t, that doesn’t really do it for me. It’s really more a, yeah, I’m much more neutral, I think. But I do think that it sort of, having the illness and doing the course has made me think about life and what life means. And what, I kind of get things in perspective and that, although I’ve got a very obvious illness and obvious baggage to carry around, everybody has in some way, whether it’s emotionally and something, or something that doesn’t have a label on it, or whether people are, you know, do have an illness. You know, everybody’s got something. And that in turn allows you to see what is rich about life. So, if you didn’t have death, you didn’t have disease, then you wouldn’t quite see the richness of life either. And that helps me, yeah. As a bigger picture, that helps me. And the smaller things, when I can’t reach things or I just can’t do things, that doesn’t really help me [laughs]. That’s just bloody frustrating. But there’s a bigger picture, yeah, and that gives me calm.

 

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

But you know, if you have a, some sort of terminal disease, don’t think it’s going to kill you straightaway, and it’s not suddenly appeared and suddenly you’re dead, it’s progressive and there are things we can do that might slow its progress. And other things we can do like drinking two, work it out, three pints of extremely strong cider don’t help us [laughs]. So you know, make your choices and live with the consequences and don’t just think, “This is a terminal disease, woe is me, I’m going to fall over and die”. Keep challenging it, you know.

I keep challenging myself to go back on my exercise bike and rowing machine and cycle, you know, and I’m resisting getting an electric, an electric bike. My wife’s saying, “Buy an electric bike”, “No, if I can pedal, I’ll pedal as long as I can”. So, it’s just I think… but we all respond differently, but I would just encourage people, don’t fall over and think, “That’s it”, and collapse and spend the rest of your life in bed, try and find something in you to say, “As long as I can, I will keep going”.

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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.

Yeah, it’s I was – I mean, basically we decided, as I think several people living with MND who I’ve met, you very quickly assimilate the attitude of, “It’s here and now,” most of your opportunities, because, you know, you don’t know what’s around the corner. And so my reaction… fortunately, I was in a situation where I was actually working in a GP out of hours service by now, so for quite a large employer, so an employer who had significant flexibility. They were very good, they were very understanding when I went and said, “First of all, I’d like to reduce my working hours,” but the other thing they agreed to was annualised hours, which was absolutely brilliant for me. Because it meant that we could… I could take big chunks of time off, basically I just told my manager when I wasn’t going to be available for work, told her when we were back, and I could stack up the hours a bit when we were back.

They also allowed me just to work at the main base, in other words, I didn’t have to go out and do any visits, because doing visits, you’re carrying equipment into houses, up however many steps and stuff. Obviously, that wasn’t going to work so because of that, I was actually able to continue working for five years after I was diagnosed, which was good on all counts, really, because I enjoyed my work, I enjoyed, you know, interaction between work colleagues and so on. You feel useful, I suppose. And to be blunt, I could earn some money while my husband was unable to because he’d had to finish work.

So I mean, that sums up our reaction, really, was, “Let’s get on with living life now.” We talk about – what happened was we brought our retirement forward, if you like, which we were very fortunate to be able to do. Not everybody is in a position to be able to afford to do that, and that must be horrible.

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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.

For a start, I hadn’t planned to retire as early as I have done. I had planned to go a bit longer with the vision of supporting my daughter through university for a bit longer, save up some more money and to go on walking holidays because I’ve done one of those in the past. I’ve retired earlier than I would have liked to, because I was, before I got this disease I was feeling invincible and I could go for another five years, but luckily I’d stayed on the pension that allowed me to retire at 55.

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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.

It’s challenged how I see myself and it’s made me have to re-think who I am… When you’ve been, like I have just been, all my life I’ve just been able to do whatever I want to do. I don’t mean because I’m rich or anything, just if I want to learn a new skill, [clicks fingers] learn a new skill, easy, you know, anything. I wanted to, I thought I’d learn how to kayak aged 50, went on a course and learnt how to kayak, learnt how to roll the kayak, learnt how to control it, it’s great. I had planned to learn how to sail, you can’t tie knots, you know, so I’ll find somewhere, someone who’s got a yacht that’s adapted for disabled people and I’ll go sailing.

So I still try and cling on to bits that form my identity while I still can, accepting that I won’t be able to. So then who am I? Well I’m an argumentative, challenging person who wants to make things happen. I can still do that while I can still talk. When I can’t talk, my mum could still communicate what she wanted, so yeah, I could still communicate what I want. It’s how can I live without being too much of a burden on the people around me? I don’t think they quite yet understand fully what is coming.

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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.

Chris: Ken can only communicate through this – I mean we do it as a family. Like because it was my birthday Sunday and everybody came round for tea and there was a lot of us, and, and poor old Ken, you don’t do it on purpose, but he, you know, he has to sit in the background. And I mean people do sit and talk to you and that, don’t they? But you, sometimes you realise that Ken’s not being included. Because it’s hard to do small talk, isn’t it? You know, he can’t, by the time Ken’s typed in something he wants to say. And when we’ve gone visiting and like Ken will type something in and then he does his ‘uh-oh’ bit, and the whole room goes quiet so that we can listen. And, and its drawing attention to yourself. And, you know, it’s just something you have to sort of live with really. But it is, you know, it can be a problem, can’t it?

Ken: Barrier.

Chris: Sorry? Barrier. It is, it is a barrier, yeah.

You can’t present yourself any more in a way, can you?

Chris: No, that’s right. That’s why being able to email people, Ken can write up, and he’s got a bit of a sense of humour, haven’t you? So, you do write funny things. And people love getting Ken’s emails, because he tells them stories.

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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.

I had looked into getting an electric bike, but I couldn’t kind of keep my, well whenever I put my foot down, it was liable to kind of give way and I’d end up on the ground with the bike on top of me. So I got an electric tricycle which, which kind of kept me mobile through the autumn and winter of 2019-20, and then got an electric, an all-terrain mobility scooter, which allows me to kind of, you know, again go considerable distances and up into the hills, and generally get on with doing the things I enjoy, albeit with a certain amount of constraint. 

And I got a mobility vehicle, a Berlingo with a ramp that I could get the tricycle and then the scooter into. So I’ve been able to kind of keep mobile, until September when basically the weakness in my legs developed to the extent that I could no longer handle the ramp and didn’t really feel safe driving the car, either. So I’ve now bought a van with a lift and hand controls, which I’m struggling to get used to. But yeah, in the hope that I will kind of keep mobile for as long as possible, keep getting out there, yeah. But increasingly, it does feel like just having MND and trying to, as I say, keep mobile and independent has almost become a full-time job in itself.

The biggest frustration was that the places I like to go with my, with my electric tricycle, what I really loved to do, I had an engineer friend increase its capability so it could go a bit faster than it was kind of set to do. I loved to take it up the coast and then take it on to the beach at low tide and go whizzing along at 25 miles an hour on the sand, it was just so exhilarating, made me feel really alive. I never found out who – the police or the county council or the local farmers – blocked all the car parks along the coast so you couldn’t get there, you know? It felt so unnecessary, you know?

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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.