Times when worries about inherited MND come to the surface

Some people described times where they were more and less preoccupied by thoughts and concerns around inherited MND. This section covers:

  • “It’s a rollercoaster”: times when worries come to the surface
  • Worrying about possible symptoms

“It’s a rollercoaster”: times when worries come to the surface

The impact of inherited MND in the family can change over time and as circumstances change.

Over the years there have been times where inherited MND has been a louder or more muted presence in Lizbeth’s family. At the moment, it’s “happily lying dormant”.

I can’t remember not knowing about MND in my life if that makes sense. If I was, if I sit down and really think, I can remember being a really carefree young girl, but motor neurone, MND has been a part of my life since I’m about nine because I think I was 11 when she [grandmother] died… I think the advent of the internet was a big thing, but I think for a good chunk of my life I didn’t think about it. It’s only really, it only really came back to the forefront of everything when… we, when we saw the physiotherapist that day. Even though at the back of my mind all the time… So… 20 years ago it became a louder conversation in our family again, because she [mother] was 50 and she wasn’t getting it and then oh my god, my cousin had it, and then, she went mad looking for things to do to stop it happening to her, and she did some really crazy research and all this sort of thing happened.

Then that all died down again. You know, she got to 52, 53. Again, it became a muted conversation in our family, it wasn’t so heightened. And then things happened, you know. My daughter, my youngest daughter was born, my husband and I got married in 2008. Again, it was just, best way to describe it is muted, it’s never not there but it was not there, there. Then of course she had this operation and then it wasn’t getting better. I mean, she’d [mother] be saying to me, “I don’t need to see anybody, I know what’s going on for me”, and I’d be cross with her, I’d say, “Well, that’s not good enough”.

In hindsight maybe if I’d have left her to it, I don’t know… but it became then, so ten years ago, 11 years ago, all of a sudden it came back again. So I suppose that’s what happened with motor neurone, MND in my life. It’s there for a while and it lies dormant for a while and then it’s back again and then it lies dormant a little bit and then it’s on the surface for a little while and then it’s there again, and we’re at a place now where it’s, where it’s happily lying dormant.

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People described times when they didn’t think about it very much at all, and a few people felt that they hardly ever thought about it, as it wasn’t relevant at their stage of life. For Georgia, thoughts of inherited MND are “infrequent”; she says, “I’ve sort of trained myself to think that it’s not an issue for me to worry about at the moment”. For others, inherited MND is “always in the back of your mind”, even if a lot of the time they weren’t actively thinking about it. People used phrases like “worming around in my head” and “lurking in the background”.

Although for the most part worries may stay in the background, people we spoke to found that there were times where their thoughts turned to inherited MND, which could have an emotional and psychological impact. These were different for different people but included either during or after the illness or death of relatives; significant dates and anniversaries; when approaching the age where relatives developed symptoms; when noticing possible symptoms; over genetic testing and after receiving results; when taking part in research; seeing things about MND in the media; and when thinking about the future. However, this wasn’t the case for everyone. For Calum, “it just happens unexpectedly”. Others thought about it more at times of stress, or in quiet times or free time, such as after work or at night.

“Some days are better than others” for Lillian. Whilst there are times where she is more or less preoccupied by the possibility of developing inherited MND, she has strategies to help her cope.

Over time it’s something you, well something I haven’t been able to get off my mind. It’s there; it sort of sits there, “This could affect you any day”. Some days are better than others, and I manage it very well, I think for me. Obviously when my cousin died it sort of sets the worry going. And then obviously my older cousin died in November last year, and that again set me into a swirl of worry. Going to GENFI kind of brings it you know, like the week before I’m going to GENFI because I know what I’m going for, what I’m being sort of examined for and tested on is all around it.

But I manage to keep it off my mind for a long time. I’m just coming to the end of a block of cognitive behavioural therapy and that has really focused on trying to deal with uncertainty.

CBT isn’t quite the right thing to deal with this because I think CBT is really structured around things that can be solved, of coming up with solutions and there is no solution to this, but some of the techniques that they use around worst case scenario and understanding that you go to worst case scenario, and understanding that what you’re dealing with is uncertainty, and that everybody’s got uncertainty in different forms. What it’s done for me is it hasn’t stopped me worrying but it’s given me an understanding of how I worry. And I’ve got my final session next week just to do my sign off and plan.

If I trip accidentally or if I fall over something I’m immediately into full scale panic, I think I always will be. But what I was doing was when I had a worry about it, when something was worrying me I was having full scale panic attacks lying in bed at night – I don’t tend to worry in the day, I worry at night – and the CBT has helped me just calm that down to not sleeping but not going into a full scale panic attack, it’s just got me into you’re just suffering from dealing with uncertainty, that’s life, everything is uncertain. I’ve gone into everything’s uncertain now; you can’t trust anything.

It’s something that’s there, and it’s something that can affect you, but part of dealing with it is just trying to make the most of life. I’m better if I’m busy as well, it’s at night that I worry more. During the day it’s hardly on my mind, it’s, I can go through days and days and days and it doesn’t even pop into my mind because I’ve got a challenging job that keeps my mind off it, you know, keeping the house clean and tidy with the dog running round, it keeps me busy. It’s the dull moments at night when it worries me, but it can get pushed out of my mind with something else I’m worrying about. It isn’t like a tombstone hanging over me, it’s like a rollercoaster of it’s not really on my mind, it’s on my mind, it’s not really on my mind.

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Richard has “trigger points” which bring worries around developing inherited MND to the front of his mind. He has to push them back to a space where they don’t rule his life.

It’s just always there to a lesser or greater extent. I think whenever there’s a high-profile diagnosis that hits, that hits the press… So, there was the Doddy Weir stuff. And again, there’s been stuff on the TV with the ‘Sports Personality of the Year’. That… I always cry at ‘Sports Personality of the Year’ when they do the last award, but that just [phew] blew me out of the water, in terms of a bit about just his bravery and what have you. So I think that, there’s stuff that sort of brings it out like that, and again, there’s the rugby league guy who’s just been diagnosed. I forget his name. So, they’re, there’s those just little trigger points I guess.

When it’s at a steady state, as I say, I’ve moved it to a manageable place, where I can function without it really passing me, passing a thought on it. But, there will be those trigger points, and then obviously, you get stuff like Mum’s birthday, Mother’s Day’s coming up, anniversary of my mum dying – stuff like that. By default, then all of a sudden, it’s back at the forefront of my mind, again. And I have to find myself going back to my way of dealing with it, so it comes to the fore, and then it’s like, “Oh, no, what you doing?”. On the train to work thinking about, have I got MND, or not? Push it back into that space that says, “No, don’t let this rule your life. It is what it is, let’s stay positive.”

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Getting closer to the age where a parent or relative was affected can intensify fears, as people often imagined that they might develop symptoms around the age family members had been diagnosed. Some people talked about “doing the maths” to calculate how long they might have before symptoms developed. They based this on their family history and what they knew about the average age of onset. Liz Z explained, “because both my mum and her mother died at the same age of 57, the years from 50 onwards, I was living in dread of symptoms and every twitch”. Other people questioned whether they might get more worried as they got closer to the age where relatives were affected. However, knowing symptoms could develop at different life stages meant it was sometimes hard not to worry at any age.

Pre-symptomatic genetic testing can be a significant time. Nobody we spoke to said they regretted having the pre-symptomatic genetic test but receiving a positive result can change people’s outlook. Harriet has been more preoccupied by thoughts of the future since finding out she carries the C9orf72 gene variant. It is especially prominent as she goes through a process of pre-implantation genetic testing. She describes how, “I feel quite at peace with the thought of it all. I don’t feel a great deal of resentment towards it… but then on the flip side I resent having to go through IVF, 100%… that’s frustrating and disappointing but it is what it is”.

Before the test, Jade recalled thinking, ““Well, I’m not going to sit and cry about something that might never happen”. Knowing she carries the C9orf72 gene variant has shifted how she perceives the future; now, “it’s more of a definite ‘you might get symptoms’”. Whilst knowing this is “a bit more depressing”, Jade feels she has got to the stage where she has processed this information and can “get on with it”. She described inherited MND as “a fly in your glass of wine”, “It’s just a little tiny annoyance. I know it’s there, I can fish it out and put it out of the glass if I want to, but it will keep coming back because it’s not going away. But there’s more wine than there is fly, so it’s okay”.

Worries over inherited MND may have an emotional impact for other family members too. Helen, whose husband Richard doesn’t know if he has inherited the C9orf72 gene variant, described how “it comes and goes in waves… it’s always on our minds, but it’s often like hidden away and then it occasionally rears its ugly head and then disappears again for a while”.

Worrying about possible symptoms

Like Liz Z (above) focusing on ‘every twitch’, being very alert to possible symptoms was a common experience. This is sometimes known as being ‘hypervigilant’. People often worried about things that other people might brush off, like tripping over or dropping things, and felt particularly aware of early symptoms family members had experienced. Whilst not everyone felt worried, especially when they recognised these things as irregular or having a particular cause, others described going into “full scale panic” or “meltdown mode” when this happened. For Liz Z, worries around inherited MND are “always the go-to place if you have any health problem”, and Lexi said, “the first thing you think about is, “Is this it?””

Lexi immediately thinks of inherited MND when she has “something that’s a bit odd going on”. Over time she has learnt to calm herself and recognise symptoms as “wear and tear”.

It’s always in the back of your mind, and as I say, if you have something you know, that’s not 100% you think, “Oh, gosh, what’s that?”, and then, but it hasn’t changed over time. It might, may, yeah, obviously with mum dying it kind of brought it to the forefront.

As time goes, I think time is a healer, but I don’t think that thought of having this genetic disorder goes away, it’s just a way of managing it, and for me it’s compartmentalising, and really the only time it rears its, I call it its ugly head, is things like if I’ve got something that’s a bit odd going on you know, that isn’t, that could be, then I sort of think about it.

But I’ve even, even that I’ve kind of learnt to you know, deal with that because I do have lots of you know, I’ve got this sore back continuously and all of that, so, and that’s not hereditary, that’s just, that’s just wear and tear and getting old basically [laughs]. So you know, I do just have to calm myself down and think, well you know, everyone, getting nearly 50 now so you think, “well you are getting older Lexi, you have to, and you haven’t been you know, you’ve skied like a nutter, you’ve ripped god knows how many ligaments along the way, your body isn’t like it was”, so you just, and then once you have that thought in your mind you think, “Oh well yeah, that’s true” and I you know, the chances are it’s nothing. And then I go for a physio session and rightly so, it’s nothing.

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Like Lexi, other people described how over time they had learnt to take a step back, calm themselves down and recognise other possible explanations for the symptoms they were experiencing. Some went to see healthcare professionals for advice on possible symptoms, including neurologists, GPs and physiotherapists, which could be helpful and reassuring.

Family members sometimes found themselves watching partners or children for signs of MND. One person, whose partner had a 50% chance of having inherited a gene variant linked to the disease, described how in the past they “whipped ourselves up into a bit of a frenzy” worrying about possible symptoms; now, she tries to keep her concerns to herself so as not to upset him.

People sometimes found it helpful to share their fears and talked about finding support in those around them. Mary described how her sister “gets it” in a way her previous partner did not. “They kind of look at you as if to say, ‘Are you all right? Like, it’s only a funny twitch in your hand’, like, it’s not a big deal to them because they don’t fully understand the extent of it”. Other people also felt that those who had not been directly affected could not always understand their concerns, including doctors.

Liz Z is “constantly worrying” about possible symptoms. Going to the GP has made her feel like a bit of a “hypochondriac”; she doesn’t think other people understand that “overwhelming fear”.

Because I remember my mum telling me that she was on holiday in New Zealand and, with my father, and she bent down to look at something in a glass cabinet, and she couldn’t get up again. And everyone was teasing her, they said, ‘[mother], you’ve had too much to drink,’ and that was the first sign that she could identify that she’d started to get weaker in the limbs. And so, with age, we all change. Bodies change. I’m less able to do certain things, I’m not great at kneeling on the floor now, I have a bit more trouble getting off the floor, and of course because I’ve got that memory in my head of my mum saying that, I’m constantly worrying. And I talk to – I work with physios and things and I say, ‘Have a look at this, what do you think?’ Go to the GP, ‘Look at this,’ I mean, my hand, I look at my hands to see if there’s any muscle deterioration, you know? You check things. 

And if, I remember laying on the bed once and my leg was, my calf muscle was twitching, and muscles do twitch innocuously, and I went to the GP and I said, ‘I think I’ve got MND,’ and that was when I had the first EMG done. Turns out it was nothing but it, and then you feel a little bit like a hypochondriac, that you’re going to the GP with all these things. I mean, I went to the GP last year and I said, ‘I’ve got fasciculations in my hand,’ and she looked at it and she said, ‘No, there’s nothing to worry about,’ but for me, there is something to worry about. And I don’t think people understand that worry over, sorry, that overwhelming fear.

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Despite anxiety about the possibility of developing symptoms, people often found ways of coping with their worries around inherited MND.

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...