Inherited motor neurone disease (MND)

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.

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.

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.

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.

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.

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.

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.

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.