Mary

Age at interview: 49

Brief Outline:

Mary is 49 and works full time as an office manager. She has two children, who are 15 and 21. Ethnic background: white British

Mary found out about inherited MND in her family after her father was diagnosed. She then was told that that her grandmother and great-aunt had also died of the disease. Although Mary worries about developing MND in the future, she tries to stay positive.

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Mary’s father was diagnosed with MND in 1998, shortly after she had her first child. She found out that it was an inherited form when a relative mentioned that her grandma and great-aunt had also died of the disease. The family then asked her father’s consultant whether it was hereditary, who confirmed that this was likely. At this time, Mary’s main concern was for her dad; looking back, she feels she didn’t fully understand MND because she hadn’t seen anyone go through it. It was only after her father died, around two years after his diagnosis, that Mary began to process what this could mean for her and other family members.

Mary does not know the gene variant responsible for the disease in her family, as her father did not have a genetic test before he passed away. Although part of her wishes she could have the option to be tested, Mary “can’t see any advantage of knowing”, as having the gene variant would not mean she would definitely develop the disease. She also worries that she would find it hard to cope with a positive result and that this would impact how she lives her life. If there was a treatment available to stop MND from developing, Mary thinks she would feel differently about testing. 

Mary is particularly aware of bodily changes like muscle twitches, choking on food, or falling over. She has been to see her GP about these concerns and was referred to a specialist for more tests. On both occasions she received normal results, which helped “put your mind at rest”. Although Mary is now coping better, and tries to stay positive, she feels she is getting closer to an age where MND could develop.

In Mary’s family, MND is not often discussed. Although Mary and her sister sometimes talk about it if they have seen something on the television or are worried about a particular symptom, mostly they discuss it on a “surface” level. Mary has not yet told her children about inherited MND in the family. She doesn’t want them to live with the worry that they could get it and change their views on life. However, she questions whether she should tell them, so they can make their own choices around starting a family. Mary isn’t sure how she would approach this discussion or where she could seek advice on how to go about it.

In the past, Mary has joined online forums on MND. She found that speaking to other people in a similar situation was helpful “because you could relate”. However, Mary feels she got a bit “obsessed” with looking up information and stopped using these sites. Nowadays, she uses the MND Association website to keep up with research progress and look for opportunities to help with studies.

Mary has not been offered any professional support around MND, either when her father was diagnosed or since his death. Mary feels that support to families affected by inherited MND needs to be improved. She thinks this is especially important after the death of a loved one, as other relatives may still be living with worries about their future. Mary encourages other families in a similar situation to stay positive.

After her dad’s diagnosis, Mary was told that her grandma and great aunt had also died of MND. Finding out about inherited MND in the family was a surprise.

When it came to light that my dad had it, I think his sister said, ‘Oh, just like our mum,’ and I was like, ‘What do you mean?’ and he says, ‘Oh, yeah, your grandma died of the same thing as well.’ And then because I used to go to the appointments with him a lot at the hospital and speak to the consultant, who then looks at the family, don’t they, and has… could see that my… I think the consultant that me dad saw at the hospital treated my grandma, so he knew then. And then we asked, ‘Is it hereditary?’ and he said, ‘In some cases, it is, and it looks like it is in your case because of three members of the family.’ Then they were going on about stuff that it might have been to do with… the reason why MND, to do with mining, or… I didn’t really understand.  The consultant was saying it depends on certain areas that you live in. That confused me a little bit.

He knew. He knew because of his experience with his mum, and he’s got two brothers and a sister, so they were all aware as well, I think. So I think once his symptoms started showing, I think they were more aware of what it could be than me and my older sister were. Maybe my older sister were as well, because I wasn’t young, I was 27, but I was the youngest so they kind of kept me out of it a bit. So I don’t think it was such a surprise to him as it was to, like, the rest of the family.

Mary has always thought that she might develop MND, because she takes after her father and grandma in other ways.

I’ve always had… maybe a feeling deep inside, that I probably will get it, only because I was really close to him and I just feel that we were somehow alike, more alike than what my sister was to him. And then my grandma, when he was really ill, his sisters and brothers were saying that I had my grandma’s eyes, like, I was the spitting image. And I was thinking, ‘I don’t want to have my grandma’s eyes,’ because I thought if I’ve got her eyes – I know it sounds bizarre, but I thought then it might be passed down because I had some gene because of her eyes. Just silly stuff like that. I also used to wish that my mum had probably had an affair and he wasn’t really my dad [laughs], just so that I didn’t have the gene. But I think we’re too much alike for it, for him not to be my dad, so yeah.

Mary felt she had to push her GP to refer her for tests over possible symptoms. The neurologist she saw was “lovely” and “reassuring”, but going to a different hospital was a less positive experience.

It would be a case of going to the doctor, the doctor doesn’t really understand MND first of all, because he’s just a general practitioner.

Then you’d have to try and explain, ‘I know that I’m panicking but it’s in the family,’ da-da-da-da-da, ‘I’m getting a bit worried,’ and they kind of look at you as if… and then they usually get the book out or go on the computer, and then you kind of push them so that you get an appointment at the hospital. Then when you go, it’s not really… the first time I went, it was with the consultant that my dad had been seeing for a few years, so I’d had that general relationship with him. And he was lovely, really reassuring.

You could speak to him about things and stuff like that. And he basically reassured me and said, you know, did basic tests on my reflexes and looked at my muscles and he said, ‘No, you’re perfectly fine, Mary,’ kind of thing.

You know, ‘It’s all in your head but if you ever feel like this again, just go to your doctor again and come and see me,’ that’s what he said, but I’d moved out of the area. So, and then, now I’m in a different area, it’s just your general hospital and it’s just a random person who just hooks you up on the machine, which I’d never had before, and then just gives you the results and that’s it.

Although she sometimes finds herself “panicking” about not having life insurance or having written a will, Mary isn’t sure how best to go about these things.

I keep panicking that I’ve not got anything in place.

Like…

Like, nothing. Like, insurance for the kids, just… a will. Maybe I’m putting it off and I know I shouldn’t put it off, but and I think now, because they’re getting a bit older now, I’m not so much… when they were younger, I used to keep thinking, “I better get something in place because if something happens, who has custody, where do they go?” Whereas now they’re a bit older, so I’m thinking, “It’s okay, my oldest will look after my youngest.” I know that sounds a bit bizarre, but I know I should get stuff put in place but I don’t know where to go for the insurance purposes, I’m not sure what to do about things like that, so… yeah.

Part of Mary wishes she could have pre-symptomatic genetic testing, but she points out that whatever the result, the future is uncertain.

Part of me wishes that I did know the gene and then I could get… but I’m not sure if I would want to be tested anyway, because imagine – so I could get tested and they’d say, “You have it,” but then it might, it might make my life change, wouldn’t it? It would change my decisions in, in going through life. Is that a good thing or a bad thing? I’m not quite sure. And I could be tested and it could be positive, but then I might die at 70 and not even develop any symptoms.

Yeah, you might never get it, you mean.

Yeah, I might get knocked down tomorrow… so it depends. They might say, “You’ve not got it,” and then they might be wrong and I’ve still got it. Because I think that’s the thing, I think if somebody tells you that you’ve not got it, I still think at the back of your mind, you might think, “Hmm, I still might though, might be something else.” So yeah.

It’s a shame that you couldn’t say, “If I don’t have it, tell me, and if I do have it, don’t tell me,” you know? Something like, I don’t know, I just don’t know how I would cope with it. I think you would, you would try and jam that much in your life, wouldn’t you, if it came out positive. And there’s certain things that you would have to put in place, which you should be putting in place anyway. But I don’t know.

Although they “surface talk” about inherited MND, Mary and her sister tend to keep their feelings to themselves, because “we don’t know how to deal with it”.

We talk surface talk, kind of, now and then, very occasionally. Usually if it’s – like the rugby player the other day, the other week, and my sister says, ‘Oh, did you see the news with the rugby player?’ and I says ‘yeah’, she went, ‘It reminds you of dad, doesn’t it?’ and I said ‘yeah’. That’s kind of as far as we get, we don’t really go any further unless one of us has a weird symptom and we’ll say, ‘Do you think it’s that?’ and she’ll say, ‘No, it’s not,’ and then that’s the end of that conversation. I suppose it’s because we don’t know how to deal with it so we just keep it to ourselves.

Mary isn’t sure how to talk to her children about inherited MND. Although she doesn’t want to worry them, she sometimes questions if they should know.

So the, my children, I’ve not really told them or gone in-depth with anything because I’m not sure… not sure how to approach them, I’m not sure [sighs] I don’t want to worry them, I think. I don’t want them to feel like I feel, because in a way, I wish I didn’t know. If I didn’t know, then I wouldn’t worry, would I? So I try to keep them from knowing so that they don’t worry, and then hopefully nothing develops with me, and then they, they don’t have to then worry. And if for some reason it missed me and went to one of them or skipped them and went to the grandchildren or whatever, I’m hoping it would just cut the worry out for them, I think. That’s what I keep telling myself, but then in a way, I think, ‘Should they know?’ because then they have a choice if they want to have kids themselves, or… I don’t know. I don’t know what to do. I don’t even know where to go to even get advice on that because who could give you advice? I think it’s down to personal, personal choice, isn’t it? Personal option. Yeah.

Mary found it helpful to speak to others going through the same thing but stopped using online forums when she found herself getting “a bit obsessed”.

I used to go on the forums and speak to people that you don’t know who are going through what you have gone through, and have conversations. That helped in a way because you could relate, because we were both kind of… whoever you’re speaking to is going through the same thing.

I sometimes get what they call twitches in my arms and then I go into a panic mode.  And I found that other people do as well, and some people have gone for testing or, or things like that.

And then I think you get a bit obsessed. At one point I thought, ‘I’m getting obsessed with this,’ looking it up all the time, reading stuff, and I thought, ‘I can’t do it,’ because then I think it makes it worse sometimes, in a way. So then, I kind of backed off going on them.