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So for people that don't know, motor neuron disease Mhmm. Is it?
Speaker 2:So motor neuron disease, it's a neurological condition. It's a terminal illness. No treatment, no cure. No viable treatment anyway. There's one drug called Riluzole that they say can prolong your life by three months.
Speaker 2:People who are diagnosed with motor neurone disease, MND, there's no rhyme or reason, they don't know what causes it, it can affect anybody in any walk of life, and yeah you're given a terminal illness, you're given a diagnosis and told to go and live your life. I think for when Anna was diagnosed in May 2023, Anna was a social worker, she wasn't an active sports person, she wasn't a runner, she was active, busy job, stressful job, but yeah, there's no reason for why Anna was diagnosed. And yeah, you're just told to to go and live your life, the prognosis, three to five years. Less than fifty percent fifty percent of people die within three years. And then, in some ways, I can say, you have the lucky ones who who go beyond five years and the most notable people, I think, for us, which was at the time, you had the likes of Rob Barrow, who was living alongside MND, which made the awareness more people were more aware of what MND was prior to that.
Speaker 2:But all we knew was Stephen Hawking. And Stephen Hawking lived a long life, but then Rob Burrow, then we had the Coronation Street storyline with Paul. Peter Ash played Paul, and he was living alongside MND. So the awareness piece was we had a new reference point for what MND actually was, but MND, it's a terminal illness. No treatment, no cure.
Speaker 1:Tell me if you can a little bit about when you look back, are there any signs for MND, or does it just come out of nowhere?
Speaker 2:Yeah. There is. There is signs. There's signs that go unmissed, and a lot of of that goes the signs go unmissed and undiagnosed. So in terms of Anna's journey, it was coincidental that Anna had an injection, but then she started to notice feeling in her arm to weaken.
Speaker 2:So weakness in her arm. It was down to just nerve damage from an injection. No problem because you see a healthcare professional and they're like yeah that's what it is. Anna went on, it then started progressing, hand got weaker, started moving into a right into a right hand, started moving into a left foot, started moving into a right foot.
Speaker 1:Are you thinking at this point? Are you thinking it's just a reaction to the
Speaker 2:injection? Is it just what you've been told from a health care professional. So you're just thinking, oh, it's a bit of nerve damage. It's the the needle didn't go in right. But then, as it starts moving from one hand to the other, that's when we started to go, this isn't right, so let's have a look.
Speaker 2:You start going to the doctors, and we always say, a doctor, they say that a doctor will only ever see one patient in their whole career with MND.
Speaker 1:Wow. So this is rare.
Speaker 2:So, yeah, they say it's rare. What six people are diagnosed every day, six people die every day. And in terms of rare, it's the fact that people don't live with it for long enough. Yeah. So there isn't a massive community of people living with MND.
Speaker 2:And it's a tough one for me as well to say over it, because I'm in that bubble now. I'm in the MND bubble, and I speak to more before Anna was diagnosed, I didn't know what MND was. I never met anybody in my life
Speaker 1:Yeah.
Speaker 2:Who had MND. And probably now, the majority of people, apart from family that I speak to, are living or have been affected by motor neuron disease. So is it rare? I don't know. But if 5,000 people are living, that's naught point naught 7% of The UK population, a one in three hundred chance.
Speaker 2:So, yeah, you could say it's rare when you look at other illnesses and like cancers and stuff like that.
Speaker 1:Yeah.
Speaker 2:So it's but, as it started to progress, we then started to look at alternative, speaking to the doctors, and then got back and forth with the doctors and then got put on a seventy seventy week for a neuro appointment, which seventy weeks is a a long time, isn't it, to try and get some answers? Yeah. And then we were gonna start to look private, and I started having a few falls. Hindsight's a wonderful thing, but you look back now, and I know I'd have a fall, we'd laugh, and we'd all get our phones out, and take pictures of it.
Speaker 1:And then obviously, at point, that you didn't know.
Speaker 2:Right? No. We didn't know. And she's stuck between a rock when we're in Scotland and on a on a little walk, and she couldn't get on a bed in a motor home. And we at the moment, it's it was just one of them things.
Speaker 2:But the thing with MND is, and I always say, it's an evolution. So there isn't one morning where you wake up and you go, I can't do this anymore. You it's a progression, and it's happening in front of your eyes, so you're not seeing that gradual change as a quick, as an impactful and there wasn't one day where Anna woke up and went, I can't walk anymore. It was a gradual thing over time that has happened, but Anna got admitted into hospital because she had she was feeling under the weather, had a bit of a panic attack, and it was only when we went to the hospital and the nurse was saying, do you know that do you always slur your words? Or and I'm like, what?
Speaker 2:Because her speech had changed, but because we were living alongside it and with her, we didn't notice that subtle change. Her eye was a bit droopy, so then two weeks Anna was in hospital doing multiple tests, and then it was the Thursday May 3, Anna went for an EMG test where they stick needles in you and test your muscles and all that technical jargon. Then that was the last test that she had after having MRIs, testing for strokes, everything under the sun. The last test and then it just May 4, just after 10AM, got called into the room and yeah, the consultant was, yeah, diagnosed anyway with with MND.
Speaker 1:And at that point, I said the whole new world. Clearly, there's that point where your mind just goes, firstly, shit, but then what is this? So I guess you're going
Speaker 2:to I'm glad you just said swear word because there's only ways that I can sum it up really. You just think fuck like
Speaker 1:But at that point, you'd presumably you had none of you weren't you didn't know what was coming just about to hit you. Right?
Speaker 2:No. You didn't know what was coming. It was out of the blue. You always they say never Google your symptoms. We didn't really while Anna was in hospital and I didn't and there's other things that popped up and then when you get to, you sat in the hotel room and you remember them days, like I remember it like it was yesterday, the day, the time where we were.
Speaker 2:Anna called me that morning and said, look. The consultant needs to speak to us, but we're gonna she wants to wait until you get here. What time are gonna get here? I was like, when the kids out, I'm working, and I'll be there at ten, like, the earliest we could get there. Straight to the hospital, and then they pulled us into the room.
Speaker 2:And then I think I knew more than me, more so about what it was because I know it a social worker. She'd only ever seen two people in her career. And, yeah, it was she knew more than me, but you you don't really remember exactly what was said word for word. But they say MND. They then go down the terminal illness.
Speaker 2:No treatment. No cure. And they literally hand you some books and yeah, go and live your life. And then that was it. Me and I sat in the room for an hour.
Speaker 2:Probably just cried and cried. And then the nurse kept on coming back in. Are you alright? And I was like, just leave us for a minute. Just hugged each other.
Speaker 2:And then one of the the first things that we said to each other was, what about the kids?
Speaker 1:Old were the kids at this point?
Speaker 2:So Fallon would have been about 13, 14, even a year older, and then Tilly was about she was just turned 18. So that was the first thing was fucking hell. So I remember that that vivid moment, and then they had to discharge Anna. I then went out and made phone calls to all the family. I remember them phone calls stood outside Salford Royal, breaking the news to everyone.
Speaker 2:And then
Speaker 1:That's raw. Right? You just found out at that point, this isn't you've had a couple of days to sit on it and recover this.
Speaker 2:Explain it. Like, you physic there's no way unless you've been there and done it, no one else will feel what you felt in that moment, honestly. And there's probably people who've had situations and had news like that before. In some ways, it's I think we've probably all had experiences where you've been told that a loved one's passed away if it's sudden or and it's that feeling. It just hits you in the gut.
Speaker 2:Like, you can't describe it. You just know that it hurts, and it's just very painful. And then in typical Anna fashion and typical Barrow fashion and how we had we're as a family, we said to Anna, it was like, cool. It's time to go home, and what do you wanna do? She said, let's go to the pub.
Speaker 2:Well, let's see. So we went to Anna's mom and dad and her sister. The kids were in school during that time. Difficult for them, but, yeah, we went to the pub. Yeah.
Speaker 2:And then we got home. The kids came through the door. We're very close family, very close. And, yeah, we sat the girls down, and then I think that was, like, the turning point then. From that afternoon, everything everything changed in some ways.
Speaker 2:And, yeah, we sat down with the kids, told them. Some people have a different journey. Some people don't tell the kids straight away, and they absolutely me and Anna absolutely get that. And I just through these MND journeys that there's no no journey's the same. No families are the same the way that you deal with it.
Speaker 2:They're not the same, and but we dealt with it the best way that we thought it was for our family. Yeah. We told the girls, and then, yeah, King's coronation weekend. We tried to party, and then, yeah, your life just changes from that moment on.
Speaker 1:And our part of this podcast is about raising awareness, and and we're definitely gonna do what we can to do that. But I wanna talk about you for a second because this is it's brutal, isn't it? When you've got a career and your family's set and you're on a great trajectory. You're happy. You've got the love of your life.
Speaker 1:You're a childhood sweetheart. Two two, three kids, sorry, at this point. And then you get this news. You've then got to reevaluate kind of everything that you're doing and you've done.
Speaker 2:Yeah. Percent. You have your plans. You try and make your plans. You try and like I say, me and Anna were together since we were 16, 17, married when we were 21, early young family.
Speaker 2:We had great careers. We worked hard. We had our home. And then you have you have your plan of life, which was all about the kids, making sure that they have the best. But they were all into the hobbies, the dancing, multiple dance comps, and all that sort of stuff every weekend.
Speaker 2:And we just life was just all about us as a family and the kids. And then we always thought, love to be mortgage free when I'm 40. Love the kids to be thriving in whatever they're doing. And then years down the line, we we have our time. We get to see the world, all that sort of stuff.
Speaker 2:And then the diagnosis comes and, yeah, all of a sudden you just rip up that book and you start writing yourself a new one. But with this new book, it's very there's it's not a long term strategy. Do you know what I mean? It's not a because you'll every day, depending on how Anna is and how MND is progressing, You're living day to day and month week to week, month to month, and creating looking at milestones, that's a big thing for us. A key date in the diary is a milestone, getting to Christmas, getting to birthdays, and doing all that.
Speaker 2:So, yeah, your life just completely changes, and wing it along the way. And I think, like I say, like Christmas, getting to Christmas, and that's a milestone. We're still here. We're still fighting. A year down the line, when you can stop and you can look back and reflect and be like, do know what?
Speaker 2:Yeah. We've got to Christmas, or it might be that you put a date in the diary that we're gonna go and we're gonna go on holiday. We're gonna go and do a day trip. We're gonna it's a goal to get to it's that purpose of reaching for something and strap because when you're diagnosed with M and D with our journey, Lana had to leave work. She was a social worker.
Speaker 2:She loved her job. She was amazing at it. She was a team manager, social worker for local authority. I then worked for telecom telecoms company for years, but then moved into the charity sector. And then I left work to care for Anna.
Speaker 2:It can become a lonely place. So then milestones give you that goal to reach for if because in work, and it might be a promotion or the next step in your career or whatever. And but you're at home 90% of the time when you're living with MND. Because life can be challenging. Getting out can be challenging.
Speaker 2:So it's about creating them milestones just to reach for a little bit. Like I say, the holiday, the day out, the birthday, and I love that sort of stuff. I've got my daughter's eighteenth birthday coming up at the end of June, and Anna's in full planning mode. Do you know what I mean? And it just gives her that.
Speaker 2:And then all the other stuff that we're doing, we'll probably touch on. But, yeah, it is yeah.
Speaker 1:It's difficult. We spoke a little bit about the purpose side, yours has changed massively now. You you've gone on this mission of writing poems. You've got all these fundraisers coming up. How do you feel like it's affected you and the purpose led stuff that you've then gone on to do?
Speaker 1:And what are you trying to achieve with it? Or what's the goal? What do you wanna get to?
Speaker 2:So the purpose side of things. My purpose in life has always been to be the best husband and the best dad to the kids. That has been always been my purpose in life.
Speaker 1:Why is that?
Speaker 2:I think ultimately, I think my upbringing, it wasn't terrible, it wasn't, but broken home, no dad around, just me and my mum and my sister, and always thriving to be better and to give them a life that I didn't have. So was with work, I was always career motivated, I was never money motivated. I'd never chased a pound note, never chased money. Money was always a byproduct and a reward for the effort that you put in. Even to this day, money's not the be all and end all.
Speaker 2:It's just an enabler to do nice things. So I've never been about chasing money. It's always been about that purpose, being a good role model to the kids, good role model to Anna, and vice versa, her to me and her to the kids. Mhmm. In a stable home, a happy home, and providing and giving the kids what they need in life to thrive.
Speaker 2:So my purpose in life hasn't but it's just been emphasized now. Mhmm. Because even though, yes, I'm not working, it's about still being the best husband to Anna and the best dad. I don't class myself as a carer, even though you refer to in the government system as a carer, but I don't see myself as Anna's carer, I just see myself as a husband and hopefully that's what any husband would do in that situation. And then being a dad, trying to show the kids that mum's in good hands with dad.
Speaker 2:We don't let the kids do any caring. Like, that was it from the start. It was, like, the big thing for me was making sure that the kids keep that mother daughter relationship.
Speaker 1:You made that decision mutually as a Yeah.
Speaker 2:From the outset.
Speaker 1:Probably also Anna would never have never wanted that either. Right?
Speaker 2:No. She wouldn't. But I think I was probably more forceful with that, and I just don't want the kids. Yeah. They'll she'll do do their hair, and they'll do the nice things, and they'll help her with a drink.
Speaker 2:But any personal caretaker, it's a toilet, showering, all that sort of stuff. And that's from the wider family as well We made a decision early on that if you class me as a carer or whatever and I know what hat I had to put on and I know what I need to do and it's the right thing to do. Anna doesn't need, and I've said it before, and Anna doesn't want more carers in her life. We don't get any outside support carers. She doesn't she just needs to have that strong mother daughter relationship with the kids and keep that and we've always tried to keep it as normal for the kids as possible.
Speaker 2:Normal, use that term loosely, but they see life changing and they see mum's abilities and changing and but it's about trying to keep it as normal for the kids. So all their activities, the school, the going on holidays and letting them be free and letting them be teenagers and things like that. So that's really important. So the purpose is about just making sure that I can still be that best person for Anna and for the kids, which has remained. But, yeah, she's a but then the other purpose side of it, it is difficult giving up your career.
Speaker 2:Anna always says that it's a part of your identity, and it's who you are and it what makes you, and you learn so much along the way from working. And we went through a journey of that transition of leaving work, completely being out of it. It's just me and Anna at home. And Anna and myself have always tried to and I think it's probably Anna's social work background, but we've been through a journey trying to fight for what we need for Anna, whether that be home adaptations and rights of people who are living with MND and being fast tracked and stuff. We're not ones to go if we get told no, we wanna be like, why?
Speaker 2:If it's not happening quickly enough, we wanna know why it's not happening quickly enough and how do we speed it up. But we also understand that there's people out there. Me and Anna count ourselves very lucky. Our age, and we're both young. We're just early forties.
Speaker 2:We've got our family around us. There's people who do who are fighting this battle on their own. So it's all about how do we advocate for others. First and foremost, my job is to advocate for Anna and make sure that Anna gets the best that she needs, but how can we help others along the way? And that's been one of our big purposes now moving forward.
Speaker 2:So we spoke to MPs, spoke to counsellors, we spoke to healthcare professionals, Anna speaks at conferences every year for the M and D Association. We have spoke about on BBC about carers rights and we're always trying to bang that drum for others as well so that gives us a good bit of purpose and for advocating for others and ultimately, it's just the right thing to do. And I think that's embedded in us through our careers. If that makes it, it's not something that we just go, oh, we're gonna do this. It's it's just embedded in our values as as as humans and
Speaker 1:as people. This as your career now? You Do see this mission as the thing that you wanna
Speaker 2:But so when you become an m a part of the m and d community, you don't leave.
Speaker 1:Why is that?
Speaker 2:You see the struggle. You're a small community. The people in it are amazing. The help that we've received, the people I've met along the way. And I can't say I can't say it's not like anything else out there, but it is.
Speaker 2:It's devastating. MND is it's devastating. You don't know one day from the next, one week from the next, what it's gonna bring, but you know what the know what the ultimate thing that it's gonna bring, which is the end. And the thing with MND is, and with anything like this, is the fact that we're fighting the MND journey. One day, Anna's journey will end with MND, but ours won't.
Speaker 2:So it's about how do we deal with that moving forward. I'm always one thought. I don't I have a saying of don't worry about today because tomorrow's gonna be worse. So whatever that journey now holds, and we will always yeah. I think once I'm a part of this community now and what we're doing, and we see it's not perfect either.
Speaker 2:And we know that there's ways that we can help and whether it be me or people or government or but the fight the fight won't end when Anna's does, when it's a and that's important to Anna, and it's important to us as a family, that legacy piece and making sure that we continue to fight for others. And that's what we'll and that's hopefully what we'll continue to do. We're doing loads of stuff. We're doing loads of fundraising. We're doing loads of raising raising loads of awareness, doing the poetry.
Speaker 2:So three hundred and sixty five days of poems, which is all around living along side MND. Children's book, hopefully publish the poetry. We're doing loads of fundraisers, which is a good way for us to give back. And ultimately, we wanna set up our own charitable course, but focusing on children and young carers because that's what's important to me and Anna. The kids are the most and the most important things in our life, and we know that they are to to others out there who have been diagnosed with MND.
Speaker 2:So it's how do we support them because I think they are overlooked. And I think that's our purpose now and that's our mission. First and foremost, it's Anna and the kids, and that will always be mine as it always has been. Anna, the kids, and then what else can we do to help? It's really I've always been a problem solver.
Speaker 2:I've always been a fixer. Whether the right way, the wrong way, botched up way, whatever that may be, I've always found a way. But then with MND, you're given something where you go, I can't fucking do nothing about But then there is the other things that you can control, and I'm a massive believer in that. And the kids, they always they'll either roll their eyes or kid the girls are the girls, and I try and give them the best advice that I possibly can as a dad through lived experience. And they I have a saying, and and the kids always laugh about it.
Speaker 2:And if now if they ever listen to this, they'd be like, I knew he was gonna talk about this in some ways because it's a part of me and my values, but I have a saying, and it's called choose your mood. And it's about the controllables, and it's about choose your mood isn't something to just go, oh, let's just parry it away. Let's just forget about it. It's about being in control. It's about acknowledgment.
Speaker 2:I wake up in the morning, I honestly say to myself, no matter how shit I'm feeling, choose your mood. Because what I'm doing there is I'm acknowledging that I feel like shit, but I'm not gonna let that dictate my day. So I go, choose your mood, and I go, how and that's me acknowledging, how do I turn this from shit into something good? But it's also doing it in the other way of going. When something good happens or something's happening, you're like, choose your mood.
Speaker 2:That's me acknowledging that this is going well. How do I keep this going? Yeah. So to and I say it to the kids and it's not a or I say it to other people and people who know me and they've adopted it because it's like a thing where I just go, choose your mood. No matter how shit you're feeling, choose your mood.
Speaker 2:It's about acknowledging how you're feeling, because I think that's the big thing is when people don't acknowledge that actually I'm not feeling great today, or I'm not in my best shape, or you know what? I'm feeling really good today. They just ride with it. They just let it go and then it can spiral. So I'm just all for about choose your mood, acknowledge how you're feeling, if it's shit, if it's good, and then you can work on from that then, and you can plan moving forward.
Speaker 2:And like I say, it's a couple of words, but I tell you what, it's done me. It's done me the world of good for since I can remember.
Speaker 1:You know what I love about this this story and your attitude, like, to everything in particular is you don't come to this from a worries me perspective. You don't come to from this as a, oh, have some perspective. We're living with M and D. You've really gone at this. Let's go and make a change.
Speaker 1:Let's go and try and create more awareness, send it into a purpose for us and really try and beat this thing. But then also this thing of just pull yourself up and let's get going. It's just phenomenal.
Speaker 2:I can either do that, or there's only other one way that I can go. And foreseeing, and liking to plan and being in control of the situation, if I'm doing this, I'm not gonna go down that route of because it could be so different. I could be I could lock myself away. I could give up. It's the same with Anna.
Speaker 2:It's that fight in spirit. We all get strength from her every day. She's the strongest woman I know. And people who know Anna, they'll completely agree with me. And we all have them people in our life that we can always say that we can look at and go, that is the strongest person I know.
Speaker 2:And she to me is and hopefully, I am to her and to the kids as well. But, yeah, she's the strongest person I know. And her fight and her strength gives me that push, that motivation. And like I say, I think I'm doing the same for her as much as it as difficult as it is for her now. And that's the thing about MND it takes everything away from you but it doesn't take your mind.
Speaker 2:It doesn't it affects every muscle in your body apart from your brain, your eyes, your sense of smell in your ears. So while all this is happening to you, your brain is fully consciously aware of what's happening. And that's why, and we have we say this with Wanda as well, and the day that she gives up mentally or it is the day that M and D will win. So it's always about as much as M and D's taken away from you, if I keep my mind sharp and we keep that purpose and we keep things as normal for the kids and trying to do these little nice things and get these little milestones, MND will never fully win if that makes sense. Yeah.
Speaker 1:What do you think the from the girls' perspective, what do you think they're learning from all this process? Because they're super young, even your oldest is
Speaker 2:21. It's but
Speaker 1:at 21, you look back at how naive I was at 21.
Speaker 2:It is I think me and I were married at 21, but it it it's different. I had a different upbringing, and I always got told when I was younger that I was mature for my age. I'm still a prat. And some people probably wouldn't agree, but for the girls, yeah, they are. But I tell you what, the kids are always stronger than you think.
Speaker 2:The and I don't wanna sound not big headed or anything, but the girls are a testament to me and Anna. Yeah. And when I look back and reflect, because I reflect all the time and I always take that time to when the poetry helps, I always take that time to reflect. And I look at the girls and I think, we did alright. Do you know what I mean?
Speaker 2:Like, we've done alright because as difficult as it is for them, and it is, and the girls are completely different. So Tilly is very much like me. She's don't worry about don't worry about it today because we've got so much to be happy for today. But when that and I know I'm the same that I don't look too far in the future. I don't think about what life will be like.
Speaker 2:I live in the here and now.
Speaker 1:Do you need that reinforcement from the kids sometimes?
Speaker 2:The reinforcement from the kids is smiles, mate, is more is as long as they're still smiling, 90% of the time, they are they're good, and they're living their life, and they're thriving, and they're all doing well in their own individual things. And they don't feel that it's too everything's too much of a burden. Yes. You still have to do all the stuff that normal teenagers do and emptying dishwashers and all that sort of stuff. But then like we said before about we do they're not involved in the care and their job is just to be there for mom.
Speaker 2:Tell them all the show them all the crazy TikToks and all this. More the whatever they do these days and share stories, and we always spend loads of time together. But the reinforcement is from the kids is that I know that it could be a lot worse for them. It So is just I don't know. Like said, don't wanna be big headed, but I do reflect and go, do you what?
Speaker 2:I've done a good job with them. But then again, I don't like to preempt the future. Most difficult days for the girls is down the road, but we don't need to worry about that today. Whatever that future all look like, I'm confident that they have the strength to you know, and that's the thing. Like, I I don't like I said, because I don't look too far ahead.
Speaker 2:And I think the girls don't either, and not like this mentality that we have, but we know that we'll deal with it. We'll deal with it in a way that we've all we always deal with things. And some people think we always deal with it with humor and positivity. That's just the way that we are as a family. Right?
Speaker 2:Choose your mood and but I know that the most difficult days are ahead. But all I know categorically, I don't know what they're gonna look like, but I know that we'll be alright.
Speaker 1:Take us to today in terms of where we're up to with Anna now and what a typical kind of day to day looks like for anyone else going through this process or at the early stages of it that needs the
Speaker 2:Yeah.
Speaker 1:So insights and support.
Speaker 2:It's changed over the time. M and D is an evolution. It can happen quickly. It can happen over a longer period of time. But currently, as we are now, Anna's got no mobility in her hands, so she can't use her arms.
Speaker 2:She's got no mobility in her legs. She can't walk. She's fully wheelchair bound. She can't feed herself. She can't go to the toilet herself.
Speaker 2:She can't shower, clean, literally independence has gone. Her speech is probably holding on to that last thread that she she said she had to cry yes Sunday morning because it's getting more and so now that she's having to repeat her repeat herself. And like we say, mate, we always have these jokes and me and straight away, me and Anna was like, okay. So Anna's feeling down. No one can understand what she's saying anymore.
Speaker 2:She we've got the technology in place where Anna's banked her voice, but we've always made it clear that we don't use it in the house. It's about because Anna says that the day that she stops talking is the day that she loses the last bit of her. So we try not to use the technology in the house. Yeah. It's about her taking the time, but us also taking the time to to understand her, and her taking the time to be understood.
Speaker 2:But it is getting a bit more difficult now with the speaking. She had a cry. And I said to her, said straight away, going to problem solving mode. I was like, we need a wake word. Like when you go Alexa
Speaker 1:Yeah.
Speaker 2:Siri. So now, we're trying a thing where it's babe. And then as soon as she says babe, I stop what I'm doing and I give her my full attention and a look at her dead in the eye. And it's becoming more difficult, but every she can't turn in bed and it so it could be some nights every hour, every two hours. She needs turning over.
Speaker 2:She needs positioning in the morning, and you've got your medications throughout the day, constantly giving her water through a PEG tube to keep her hydrated. She doesn't eat much anymore. Cake and custard's probably the number one thing on the menu at the minute. Easy to eat because the thing with Anna is her tongue's gone completely rarely, and so it's difficult to move food around. And that's been a gradual thing.
Speaker 2:So you're always might be one week, you you can eat something, and then the week after, you can't. So, yeah, she's just it's constantly you're just constantly there to be Anna's independence, and that's how and that's how it is. But there's I wouldn't want I've never wanted carers in for her, and she doesn't want that either. So I'm Anna's independent. She says to me, I need the toilet.
Speaker 2:Right? I take her to the toilet. Yeah. I want a drink. I get her a drink.
Speaker 2:I want this. Can you change the channel? Can you do this? Can you and it's what it is. When that's where we're at now with Anna's journey.
Speaker 2:But like I say, and I always go back to no matter and that's the thing that guarantee with MND that no matter how difficult today is, tomorrow will be harder because it's always going to evolve and I know we'll always need a little bit more from me and that's absolutely fine. Absolutely fine.