Inherited motor neurone disease (MND)

I think the healthcare professionals are really, really good at what they do and they’re understanding. I think for people that are trying to support people with MND, I think that it’s really, really difficult to be able to empathise, this is such a horrendous thing that no-one could know what it’s like I don’t think unless you’re actually going through it.

And I think sometimes you know, try not to be too dismissive when people say they don’t want support or they don’t need support, because I think that deep down a lot of people who initially are too proud to ask for support would really benefit from it if, somebody was kind of keeping on their case a little bit, not in an intrusive way, but just you know, it’s all about timing and you know, you might catch somebody who’s having a really bad day and they just don’t want to talk about it or whatever and you know, just not to close the door really to make sure that you know, that you keep actually trying to provide support.

But I know that in the real world you know, there aren’t enough professionals and there are too many who need their help. So it’s very, it’s very easy to cross someone off your list and think, “Oh you know, I’ll now go and help the people that do want it”, because I’ve been there, I’ve done that myself in my own work. But there really isn’t enough emotional support out there at all.

And the healthcare system, well it’s such a struggle to get things you know, things that people need like, voice recognition stuff, that takes ages, even you know, when people lose their speech I think that’s one of the hardest things that you can’t communicate, to lose the ability to communicate is so isolating and I think that that should be available, and I think that it should be talked about at the earliest possible opportunity because I know with my own experience that my family only got things when it was too late.

So you know, you have to wait for something to stop functioning before they address it. So there isn’t, they don’t anticipate what you’re going to need far enough in advance. So you know, and then, and then you know, you have to wait because there’s a waiting list, so don’t wait until somebody’s lost their speech to put them into the system. I think that’s, that’s the problem that you know, sometimes there’s, it’s too little too late.

So the one thing that I just did remember that I wish that I was pushed to do was with the speech and language therapist. They were all amazing but there was the type to speech app where it’s mentioned before you lose your voice. You can basically have, you say a word and then it gets connected on to the keypad, or you can use someone, i.e. me, I could’ve been, the speech person for my mum, where I would be saying words and then eventually she can just type and it would say a sentence out loud.
 
We quickly didn’t get that sorted and it was kind of mentioned and then, “Oh, yeah, we can do it on our next visit”, and then it got forgotten about. So towards the end of my mum’s life when her hands were going a little bit and the muscles were weakening it was hard for her to write or to text, that would’ve been really, really handy to have had that speech that she could say things immediately rather than being frustrated.
 
So I feel like that is the only thing that I wish was maybe pushed on us, because I didn’t really recognise, I didn’t know what was coming, I didn’t know how bad things were going to be and how hard communication would be. So I wish that we were just really, got explained, “This is really a good outcome, it’s a very helpful outcome towards the end. You might not feel it now but towards the end it is going to be very helpful to yourself, regarding communication”, so yeah.
 
That’s a good point. So you mean getting stuff set up so it’s ready when you need it and being told that, “You might need this so it’s best to do it now”, that kind of thing?
 
Absolutely, because although they tell you the life expectancy of MND, you don’t realise how quick things really do go downhill and you don’t have time sometimes to plan things; before you know it, a next symptom has happened and you have to focus more on that than the other stuff. So, actually getting stuff sorted immediately, because there’s no cure, I feel like we should be more aware of getting things done, the second that there is that official diagnosis.

I think pacing, timing, seeing that all family members obviously may come at this from a very different point of view. Being jargon free, I think that’s usually important because I think, you know, people supporting the carers, it’s quite a painful role to inhabit, isn’t it, for them. And sometimes, you know, you can hide behind professional jargon. Revisiting things, so lots of recap… giving something in written form, even if it be a link to a website or a handout or whatever, so that people can revisit it. Asking questions that don’t need to be answered on the spot that you can go away and think about, and then ask those questions again in a slightly different format at a later stage in the disease or in the process.

I think in terms of, if you’re going to be a carer for your loved one with MND, there definitely needs to be more support and maybe some kind of training, I don’t know. Because I know, for example, if my mum’s breathing went a bit funny, I would instantly call the ambulance, whereas they’d kind of say to us, “We’re happy to do the checks but actually there’s not much we can do, this is a progressive illness”. I think as much as I knew that deep down, I still had hope; I still thought both of my parents were going to come out at the end of this. So I think there’s just, that support, I think there’s actually quite a big gap of being checked up on.
 
I do feel in general there needs to be more people checking in. And we did have one young girl who was assigned to - I think she actually was possibly a uni student, and she was kind of in and out and I think eventually she went, we spoke to her for about a month and then she had to go back to uni and we didn’t hear from her. But she was meant to be our lady who stuck with us and gave us support, our support system I guess.
 
Then it wasn’t really, it was like one email, “How’s things going?” and then seven months later, “Hi, sorry, I’m not going to be around”, there’s no constant communication. My mum was having different symptoms monthly and where do I turn to? Google. I don’t really want to turn to Google to find out why my mum’s neck has dropped, why is her foot slipping, why is her jaw clenched together, what can I do to, to help all of this.
 
So it’s a hard one because I know that there’s obviously not enough maybe carers with MND experience, but I feel like there needs to be a lot more and I feel like maybe people need to want to actually be a carer for - because it’s a complex need so I can understand it’d probably be scary for some people. But there needs to be so much more support.
 
I’m grateful for the support I did have, and the consultants were amazing, they even cried to me because they couldn’t believe how lovely my mother was and that she was going to die, like what our family had been through. But for them to be like, “Oh, sorry, we didn’t hear from you, we thought everything was fine”, is that really good enough?