Attitudes to life, priorities and perspectives on living with genetic risk

People we spoke to described how their experiences of inherited MND impacted their attitudes to life, priorities and perspectives. This section covers:

  • Living life to the full and prioritising the important things in life
  • Changing perspectives
  • Attitudes to work

Living life to the full and prioritising the important things in life

For some people we spoke to, knowing they had an increased chance of developing inherited MND in the future meant living life to the full was especially important.

Knowing he has an increased chance of developing MND has made Anthony want to enjoy life as much as possible. He prioritises having new experiences and spending time with his children.

You only live once, basically. And if you’re going to live once for a shorter time, you want to make the best use of… enjoy your life as much as you can. So this, the whole me having the… does probability-wise mean I’ll live for a shorter period than I possibly would have done. They’re all possibles, but you never know what’s going to happen. But, so I’m much more proactive in booking things with the kids, so we’ll go to the Christmas theatre, and I definitely try and… it’s actually better now that I work from home, but I’m definitely more proactive in trying to have quality time with my kids based on… and when you look at, when you go on and see experiences of people with MND, and how quickly it does change, then it does focus your mind to do more now, basically. Yeah.

 

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Other people spoke of having an appreciation that life can be short for many reasons, like Paul who said, “I’m really keen to invest in experience and to live my life now… enjoy life with our children, wider family and friends, and make sure we maximise those opportunities before any possibility of onset”.

Some people emphasised making the most of life now and tried to live every day as if it was their last. Jade saw having this perspective as a “gift”, “I view it as a gift. I have always treated every day as if it’s my last, but now I do it even more so… I want to take my children abroad, I want to do different things, I want to have days out at the beach more so than I ever did before. Because I want photos, I want happy memories, I want to enjoy my life”.

Changing priorities and being conscious of the need to make every day count can lead people to make decisions about certain aspects of their life. Mary ended an unhappy relationship and moved to another country after her dad died of MND. Lillian brought forward her plans to get a puppy after finding out she carried the C9orf72 gene variant. For her, “knowing that I carry the repetition has made me think about a lot of things, it’s the reason why I got a puppy…I want the joy of having a dog”.

Adam also emphasised living in the present, “You very much do live in the day and everyone is told to live in the present, that’s really all you can do with this…if you jump forward to the future, you could be jumping forward to a place that’s quite scary and you don’t really want to have to live that prematurely”.

For some people, making the most of life was also about being able to look back without any regrets. Lexi said, “it’s about… creating life memories I think so that you never have to look back and say, ‘Oh, I wish I’d done this’”. People’s perspectives were shaped not just by MND but other factors, like having lost loved ones prematurely or to other conditions.

Not knowing whether he will develop MND in the future has shaped Richard’s “ethos” in life. He emphasises doing as much as he can, so if he is affected he won’t have too many regrets.

It does govern how I live my life a little bit. So, in terms of holidays, in terms of meeting friends… Helen’s of the same view, as well, just try and do as much as we can because we don’t know what, as I say, at what point in time will that coin toss happen and which side will it fall down on. I think as well, at some… A couple of mates who died quite young in their thirties, and again that just added to that and then seeing what’s happened to my mum just moulds that ethos of life, really, that… Sometimes, it’s like, “Well, should we really have gone on that holiday? Did we really have the money?” Hey ho, there’s bigger fish to fry.

There’s very little point sitting in this living room moping around and waiting for that day to come. So yeah, very much in that space of if it’s going to get me, it’s going to get me, but when that point comes, if it comes, then I’ll be able to look back and say, “Well…” I won’t have too many regrets.

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Although they don’t know if he has inherited the C9orf72 gene variant, Richard’s wife Helen described how they live as though he has. Even if he doesn’t develop symptoms, “it’s not a bad way to live”. Helen said, “it’s just become our lives, that we are always trying to have good experiences, I think, and try and get the kids to have good experiences”.

Like Richard, other people also suggested that their experiences had impacted their attitudes towards money; they felt more inclined to spend money on doing things they enjoyed now rather than saving for the future.

Karen takes the approach of doing the things she wants to do now, rather than putting them off or saving money “for a rainy day”.

It’s certainly affected my attitude to money. So I’m lucky enough to be retired on a pension and I have you know, money available to do things like travelling, so it’s definitely affected me in a positive way in that respect, I want to do travelling and planning trips and do those sorts of things while I’m, while I’m well.

In other aspects of my life has it affected me? I think I’m much more, not much more, but I’m a bit more of a risk taker now. I just think, “Oh, well you know, I’m going to”, if I want to do something, I’ll do it. I don’t like, I don’t think, “Oh, I’ll do that in five years” or “I’ll save that bit of money for a rainy day” or anything like that, I’ll just kind of get on and do things that I want to do. So I make, it does come into my decision making I suppose because, yeah.

I’ve thought a lot about, this might be a later question, but I’ve thought a lot about what I would do if I got it, and there’s been a lot of, I’ve had a lot of discussion with friends about that. But at the moment, it doesn’t affect me too much I would say other than in you know, in a positive decision-making way.

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Louisa agreed, but pointed out that practicalities have to come first, “if there’s something we want to do, I feel like we should try and facilitate it… at first you feel like you’re going to do that at all costs, but…our roof needs sorting out first”.

Some people had considered finances in terms of planning for the future. They talked about putting things in place, like life insurance or writing a will.

Changing perspectives

Having relatives affected by MND and knowing they could develop the disease in the future made some individuals feel grateful for what they had in life. A few people felt more appreciative of their health, like Kirsty who said, “it makes you sort of realise just how incredible your body actually is and what it can do and, and how we just take it completely for granted”. Other people managed their thoughts and fears around inherited MND by focusing on what they did have, like Sam who emphasised being “grateful to be alive”. Jade took a similar approach.

Focusing on the little things that make her happy helps Jade to manage her thoughts around MND. She feels grateful for the “wonderful life” she currently has.

So the way I manage it is just to focus on the things I have got, the things that have happened and are going to happen, like the good things, like – although I can’t book anything – holidays. You know, when COVID is over, I’m going to have a holiday. I focus on these things, you know? When spring is a bit more in swing, I’m going to redo this garden and it’s going to be wonderful out here. I’m fitting a utility room at the moment. I just process each task that I’ve got at a time and I get excited about things that most people would be like, “That’s ridiculous, you have no life” [laughs]. But if I didn’t focus on the little things that made me happy, I probably would focus on this a bit too much. So just one day at a time, happy, don’t worry about what’s never happened yet, and focus on the here and now and how lucky I am. I am so lucky, like I said to you earlier, I have a wonderful life. I am so very, very blessed to have everything and everyone I have. So there’s no point in counting a chicken that may never hatch as a bad egg; I’m better off just enjoying what I have got because it’s brilliant.

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Jade says that she doesn’t “sweat the small stuff” anymore, and Georgia Y also tries to put things into perspective when they are getting on top of her. However, not everyone could do this in reality, like Robyn who said, “I’m a worrier so I can’t… just let go of things because they’re insignificant”.

Calum sometimes felt a bit jealous that other people didn’t have the impact of inherited MND on their lives and found it frustrating to hear them argue over little things. He said, “it’s really bad that I think like that now but that is how it’s affected me”. Some people found that their experiences had an emotional and psychological impact, affecting their sense of self and the way they lived their lives, including their views around taking risks. People had different ways of coping and managing such worries.

Attitudes to work

Whilst some of the people we spoke to didn’t feel their experiences had impacted their attitudes to work or career, others had been affected in a variety of ways. Some people had changed the way they prioritised work.

Losing her mum to MND and her dad to cancer has changed Lexi’s outlook in life. She prioritises enjoying time with family and friends and sees her job as a “means to an end”.

For me I think my outlook in life, and even since my father died, has changed so much. I was, and I mean I, gosh, I’ve still got a very good job and you know, I really enjoy my job, but I think you know, it definitely brought the family even closer than we already were together. It put a massive strain on our family I think as, after my dad died it was really tough, but it definitely brought us closer together. So then when mum was diagnosed it was just like, it just hit us like nothing you could imagine.

But you know, we’ve always, I think that outlook in life is just enjoy life today and you know, yes, okay, you know, I might live until I’m 100 but I would rather enjoy it now, and friends, family are everything. Work is important but it’s not, it’s a means to an end. It sounds awful because I do enjoy my job, but it’s a means to an end in terms of it allows me to have you know, my family and friends and maybe have it a little bit more you know, go on amazing holidays rather than.

But that’s you know, it’s just a different outlook and way of looking at life now than maybe it was in the past where you think, “Oh, I must get this presentation done”, or “I must do this report”, and you know, you’d work all hours to do it. I still work hard, don’t get me wrong, but I prioritise my life differently now.

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A few people had been inspired to work in health-related areas, like Liz Z whose experiences over her mum’s illness drove her passion in supporting people to live and die well.

Liz Z has pursued a career in community nursing with a special interest in MND. She has used her experiences of her mum’s illness to help others, though this has been emotionally difficult at times.

I qualified as a nurse before my mum had died, and then after she did die, I stopped nursing for a while. But when I went back into nursing, I went back into community nursing, so that was 1990. So quite a long time, 30 years. The reason was that the nurses that looked after my mum really impressed me, so since then I’ve been working in the community, and I’ve been drawn towards people with MND, and I’ve worked with the focussed teams that have supported patients with MND in the community. Where I work now, I work very closely with the MND centre at the hospital, and the MND patients get referred to me because of my special interest. 

So, it’s enabled me to… I think it’s enabled me to break through some of their hesitancy about discussing things, that, because I can share with them my experience, and I had a lovely lady who didn’t want to talk about her illness, didn’t want to talk about her diagnosis, and I just said, ‘Okay, we don’t have to.’ So, at the end of the first visit, I said, ‘I just want to share with you that my mum did have MND,’ and that opened the door for her to be able to ask questions and talk about her illness. So, in a way, I’ve used my negative experiences to enable me to help people and families with MND, which is, if anything comes out of the whole experience, that’s one of the good things. And I still support the MNDA group local to where I work, I belong to the MNDA, I use all their stuff to help patients.

But it’s not only the MND patients, it’s also other neurological patients who have similar symptoms. So, in a way, my thirst for knowledge about managing MND has enabled me to help lots of people that I wouldn’t otherwise maybe have come into contact with.

I get too involved with them and I… it’s been a struggle for me, emotionally, at times, to put boundaries in place. But it’s not interfered with my ability to do the job, and I think that you have to be vulnerable to be able to be a good nurse. So, I think it’s… it has been a blessing and a curse, but you have to balance it out, I think. There’s good and bad in every experience, but it has been difficult with some of the patients, especially ones that I’ve looked after for a long period of time.

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Another person we spoke to had also moved to a job in an MND-related field, which enabled them to learn more about inherited MND and to feel like they were doing something “positive”.

Other people changed jobs to prioritise quality of life and free time. Anthony changed career to start a home business; knowing he had an increased chance of developing MND in the future was one reason that he “didn’t want to sit on a train for the rest of my life”.

Angi left her teaching position and now works part time. She said, “I didn’t want to be like my sister who worked right up until she was diagnosed… I’m enjoying myself now”.

That’s why I didn’t want to pick up my teaching career anymore. I didn’t want to be like my sister who worked right up until she was diagnosed, so she had no time off to enjoy anything. So that’s why I chose, I went from teaching to non-teaching, I’m in the house from 8.30 in the morning, I only do two and a half hours a day and the days are mine, I’m enjoying myself now, I don’t want a career, yeah.

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Others valued financial stability, like Adam who had chosen to remain in his current role. Caring for his mum, he said “I think you just want to be in the best position possible, financially, to kind of cope with any unexpected things that arise. And also to give the family member that you’re dealing with the best life possible”. Calum has considered alternative careers but has also chosen to stay in a stable job that provides a comfortable lifestyle because of his ambitions to have a family. However, he sometimes thinks, “what is the point of working for a lifestyle that you’re not going to be able to enjoy?” Jade still plans to work towards her career goals since finding out she carries the C9orf72 gene variant.

Jade plans to retrain as a nurse. Knowing she could develop inherited MND hasn’t impacted her plans; she wants to achieve her goals and “lead by example” for her children.

I’ve always wanted to further my education, I’ve always wanted to retrain and become a nurse. And I’m currently working at the hospital as a housekeeper but when my children are older, I’m still going to go probably to redo my A Levels – I say redo them; I never did them in the first place. Probably get a couple of A Levels and then get a nursing associate and go into the career I’ve always wanted that way. I can start that by becoming a care assistant in the hospital I currently work at. So, I don’t feel like doing that would become a waste of my time if I didn’t have much longer left, because I’d still get something really good out of that sort of a job. You know, I don’t think it would be pointless because I’d do it all only to die, but then you do life only to die. So, it hasn’t really changed my perspective on that; I still want to achieve my goals and I still want to lead by example for my kids.

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As well as career choices, people also spoke about an impact on how they had approached career progression.

Whilst others might assume they have a long career in front of them, William finds it hard to think about the future. He is reluctant to compromise quality of life to progress professionally.

So, people are always sort of wanting you to get up the career ladder and do stuff and do amazing things and sort of really push yourself. And it’s all very well but do I want to sort of burn out my quality of life in the next few years, and then discover that actually I get unwell, and then it was all a bit of waste of time, you know? So, I think, I think there’s always an assumption from others that you’re going to have another 15, 20 plus as a good long-term career investment, but it might not be, you know? So, if I didn’t have that possibility in front of me, I suppose I would think of myself, “Well, where am I going to be when I’m 60? When I’m 70?” And I suppose I find it quite hard to think about that at the moment, you know? I think it will start weighing more on my mind when I get to the kind of age my dad was, and that’s just a few years away, really, to be honest.

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Avoiding stress has been a priority for Lillian when considering opportunities for promotion. She has thought about retiring early to spend time doing the things she enjoys.

I think the biggest effect is thinking about work and there are, I’m at a stage, there have been opportunities for promotion, but the next stage at work would be very stressful and involve a lot of travel. I don’t know whether stress has an effect, but I just don’t want to put myself under that pressure. And that’s probably part of thinking about look after yourself. I don’t know whether being under severe stress sort of can cause onset of symptoms, but just in case.

But the major one is thinking, the major decision is thinking about when to retire, and I may not be affected until in my 80s, if I live that long. But you don’t know, it could be tomorrow, and if I’ve not had the time to get out there and do more travel, do more hill walking I’d be very frustrated I think, frustrated I hadn’t done it sooner, if I just keep on working and working and working, I’d be frustrated to think, “I could’ve retired, I’m in a financial situation to do so, and I didn’t”. Initially I just thought, “I’ll retire straightaway”, and I just know that’s the knee jerk reaction to getting the diagnosis, and I’m a bit more measured and calm about it and thinking, “No, don’t rush at it, you’ve still got to earn, you’ve still got to build your pension”.

But yes, it has affected my thinking in that way and a bit more strike while the iron is hot, like getting the puppy, and if there’s places I want to go I’m probably doing it rather than hanging back… I’ve been deliberating about booking a holiday in October, it was working out quite expensive and the lady was very patient with me about just tweaking a couple of hotels to make it a little less expensive, but in the end, I just thought, “Oh, just go for it, I want to do that”. And I think under other circumstances I’d probably think, “Hmm, no, we need to save up a bit to do that because it’s quite expensive”, but I thought, “Nah, it doesn’t matter, it’s only money”.

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Like Lillian, other people had considered early retirement to have time to enjoy life. Paul felt grateful that his job would enable him to retire early. Given his mum developed MND at 68, he feels that if he had to work until 67, he might be more affected emotionally, “My dad says now he wished he’d retired earlier to spend more time with mum, and that lives with me”. Knowing she could have an increased chance of developing MND motivated Karen’s decision to retire as soon as she could; she wanted to have more free time and avoid the stress of work.

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