So one of my friends is a physio, a neurological physio, so she works a lot with MND patients, so she knows like how bad it is. And I’ve kind of said to her in passing, like, “Oh, by the way, do you know like that’s what” – like, my friends know that’s what my nan died of but a lot of people don’t really understand what it is, or yeah, just understand the illness or have really heard of it. The Ice Bucket Challenge helped a lot in raising awareness about it, so sometimes I might say, “Oh, yeah, MND, that’s what my nan and great uncle died of, like it’s in my family,” and they’re like, “Oh, what’s that?” and I’ll say, “Oh do you remember that Ice Bucket Challenge that everybody did?” and they’ll be like, “Oh, yeah, is that what it’s for?” Or you say like, “Oh, have you seen the Theory of Everything? Stephen Hawking, that’s what he has,” and people are like, “Oh, yeah.” Although I don’t think Stephen Hawking really helps because it kind of glamorises it a bit so people are like, “Oh, well, it’s not that bad because you can just be like a rich professor and everything will be fine.” It’s like, no. But sorry, I’m getting really side-tracked.

Going back to what I first started talking about, my friend who deals with MND patients, I’ve kind of said to her before, like, “Oh, that’s what my nan died of and I could potentially get it,” and people’s reactions and hers was very much like, “Oh, no, like you won’t get that,” because that’s just what everybody wants to… And I suppose that kind of reflects the attitude that I have, really. It’s just like, “Oh, no, like I’ll worry about that later, it won’t affect me.” But I don’t really talk about it that much with other people just for the same reasons that I don’t think about it that much, because I just don’t think it would be a productive conversation.

I guess my advice to them is to just do what’s best for you and what they think. And obviously again, it’s a situation where we don’t know whether, you know, it is going to affect us or it isn’t, and everybody deals with things differently and I don’t think people should, you know, get angry or upset with themselves or second-guess their thoughts if they do want to get tested or if they don’t want to get tested. I think that ultimately, we could be faced with something that’s like really, really terrible, and therefore you should just do all that you can that’s going to kind of help you manage that. Whether that’s being like me and just not thinking about it, or whether that’s, it’s going to help you to get as much information as possible, to speak to as many people as possible, then I think it’s just knowing that it’s a really individual thing and just going with what you feel.

So I would say aside from obviously like losing my nan and my great uncle, which was obviously really upsetting and whenever you lose someone, you miss them, I would say that it doesn’t affect my life at all because I don’t let it. I think if I, like, sometimes I get into conversations with my mum about it when she needs support, but I’ve managed to create quite a good- well, I think it’s good, other people might think it’s unhealthy- but a coping mechanism of just like putting it in a box and being able to talk to her about it. But once that conversation is over, like, put the lid on the box and be done with it, sort of thing. So I would say that it doesn’t affect my life, but that’s because I’ve taken a really like hard line in not letting it.

I think it’s just something, yeah, that he, he would have been aware of as and when it was happening with my nan. We’ve never really sat down and had the conversation of like, this could be something that’s at risk to me or like our kids. We’ve never really had that conversation, it hasn’t really cropped up. I could have that with him but it’s just kind of been my decision not to, and it’s just not on my radar. But we could quite easily have that conversation.

I think because we, because there’s been so much kind of… crap, for want of a better word, that’s gone on in my family- so obviously my nan and my uncle died of MND. The year before that, so in 2015, my dad died of cancer. My partner, [partner], his mum has the same cancer that my dad has, and has been fighting that for the last sort of two years. It’s just kind of like, we’re just dealing with what’s in front of us at the moment, and it just would… again, it just feels like such a waste of time to be worrying about something that we have no control over.

So if, again, if there was a cure, I would probably have genetic testing because then, I guess once you know that you have the gene and there was treatment you could have, you’d obviously just want to know that and get started with it. I also know – only from my mum so you might be able to correct me if I’m wrong – but I’m pretty sure that it is the case that even if you have the gene, that doesn’t necessarily mean that you’ll get MND.

So again, I just think what would be the point in knowing? Like, if I knew I had it, I would worry about it even more and there was still nothing I could do about it. So that’s kind of my conclusion on genetic testing. I did go through the mindset before when I was thinking about it however long ago, I thought, “Oh, maybe if I knew that I had the gene, maybe I would worry less about small things and maybe I would live, you know, a bit more care-free and just try and make the most of things,” but I try and do that anyway, so I just, I don’t think it would change. It would only change my life in a negative way for me to have genetic testing.

And to be completely honest with you, I don’t know when it actually came about that they sort of finalised or gave the diagnosis that it was inherited because I’m sure that my mum would’ve been party to those conversations. And my mum has always been very conscious of not wanting to concern me too much because of the potential impact that could have, and so I can’t even specifically pinpoint when my awareness sort of became of the fact that it was inherited. I’d say probably more after their deaths, because at the time you’re just kind of dealing with the situation that is in front of you and helping them.

And since they died, my mum has been involved in lots of different research, not only for inherited MND, but other neurological studies and things like that with various universities and hospitals. And so I think my awareness to the sort of… to the fact that it is inherited is growing more, I’d say, in the aftermath, seeing the way that my mum sort of dealt with it and processed it, and the actions that she’s taking now.

If there was a cure, this would be a completely different conversation. I think I’d want to know everything. I’d want to be aware of percentages, how likely it was that I was going to get it, plan for things. I think, I suppose I do, I do in the back of my mind feel like I want some information about, or need to look at some information about early symptoms. Because if it’s in my family, then perhaps I should be looking out for those because if there’s a higher likelihood that I could get it and then if you’re diagnosed earlier, you might be able to do more things to slow the progress. But again, there is no cure and I don’t want to spend my life waiting for the symptoms to happen. And you can paralyse yourself, can’t you, with Google. Like, you can have a headache and Google your symptoms and it says you’ve got a brain tumour, and I just don’t want to fall into that trap.  
 
So, it’s really difficult for me to answer what information I would find useful at the moment, because I think it would just really scare me if I also saw lots of other people that were my age, for example, who had the gene or had familial, inherited MND, and were developing it really young. In my head, it’s an illness that affects people that are 50 and above, and so it kind of doesn’t feel like something that I want to worry about at the moment, so I feel like if there was more information about younger people who are also in my situation, I think it would actually really scare me. But I can appreciate that others in my situation might feel really differently and they might feel comforted knowing that there are other people their age going through the same sort of processes. But for me personally, I don’t, I think less information as possible, but again if there was a cure, it would be completely different.