Podcast – Rebooting the Brain: Life & Research after a Stroke

Voice Over:

Welcome to the Dementia Researcher Podcast, brought to you by University College London and the NIHR in association with Alzheimer’s Research UK, Alzheimer’s Society, Race Against Dementia, and the Alzheimer’s Association supporting early career dementia researchers across the world.

Dr Gaia Brezzo:

Welcome to the Dementia Researcher Podcast, bringing together early career researchers and leaders within the field to discuss their research hot topics and to share career tips. I’m Dr. Gaia Brezzo, a post-doctoral research fellow at the Dementia Research Institute at the University of Edinburgh. And it’s my pleasure to be the co-host of today’s episode. My research aims to understand how and why stroke causes cognitive decline and dementia in some individuals, with a specific focus on the role of the immune system and how we can manipulate this immune response to promote cognitive resilience. My co-host today is Mila, a PhD student that works with me. Mila, why don’t you introduce yourself?

Mila Redzic:

Hi, everyone. My name is Mila Redzic and I’m doing a PhD at the University of Edinburgh, where I’m researching microglia, which are the main immune cells of the brain and how they respond to periods of hypoxia. So, brain hypoxia or the lack of oxygen occurs during cerebral vascular disease such as stroke. And we also believed in some cases where the vascular dysfunction might be more subtle but more prolonged, which could lead to dementia. And what we think is important there is the immune response that’s associated with this hypoxia, and we think that understanding it better might help us manipulate it to promote brain resilience. So today we will be discussing the importance of lived experience in research and we will chat about the journey of recovery from a stroke and the challenges of caring for someone who’s had a stroke, and importantly how we as researchers can interact with people with lived experience and vice versa to bring our expertise together.

Dr Gaia Brezzo:

So, we’re thrilled to be joined by two amazing guests. So, we have Denis, who is a stroke survivor, and his daughter, Maisie. So, without further ado, let’s meet our guest.

Denis:

Thank you very much, Gaia. I’m Denis. I’m a stroke survivor. It is almost four years to the day that I had my stroke. And if somebody had said to me four years on when I was in intensive care that I would now be sitting, working, and supporting dementia researchers and, I am providing a voice of lived experience along with others working with the Scottish government, I would’ve thought they were not telling the truth. But here I am, I’m a stroke survivor and carry some of the scars of that stroke, and we will no doubt carry these into to the discussion going forward. And this is Maisie.

Maisie:

Hi, I’m a nurse. I graduated from Edinburgh University three years ago and now I work in Department of Clinical Neuroscience in Edinburgh. So, we see stroke survivors and people who’ve just had strokes, and we can see their progression as well, which is quite nice throughout our department.

Denis:

And she also claims to be my daughter.

Maisie:

And that too.

Mila Redzic:

Well, thank you so much for joining us today, Denis and Maisie. And just before we delve any deeper, I’m very conscious that this is the Dementia Researcher Podcast, so maybe not all the listeners are aware of all the links between stroke and dementia. So, Gaia, you are the resident expert. Could you tell us a little bit about what we know now?

Dr Gaia Brezzo:

Yeah, definitely. I’ll try not to disappoint, as I’ve been named a resident expert. I don’t claim to be, but I’ll do my best. So just to start us off with a short introduction on what actually is stroke in case some of our listeners are not as familiar with the topic. So, the two main types of strokes, we have ischemic stroke, which is the most common. So 85% of all strokes in the UK are ischemic. And then there’s hemorrhagic stroke. Ischemic stroke happens when blood supply to the brain is cut off from a blood vessel, for example, from a clot which might have dislodged from the heart, which ends up killing the cells that are surrounding that vascular network due to hypoxia. Whereas hemorrhagic strokes, which make up about 15% of all strokes in the UK, are caused by a bleeding within or around the brain.

And there different causes that can lead to both ischemic and hemorrhagic strokes. For example, arteriosclerosis, which is the narrowing of blood vessels from plaques or atheroma’s or heart conditions like atrial fibrillation. Another cause that is very close to both mine and Mila’s heart is small vessel disease. So, this is the narrowing of the very, very tiny blood vessels within the brain. And small vessel disease has been linked directly with dementia and cognitive decline. And this narrowing of these tiny blood vessels can sometimes block them. So, this could lead to strokes happening a lot more often or more likely to happen. In terms of what we know about cognitive impairment and stroke, we know that this occurs most commonly in the acute phase of stroke, and we see it in patients just after their stroke once they’ve recovered from that acute phase. But over half of all stroke survivors do experience a long-term form of cognitive impairment or cognitive deficit.

And this is really the aim of my research, to understand why some individuals go onto to develop these long-term deficits that then progress into dementia. We know that the inflammatory response plays an active role in resolving the damage after stroke, but the immune system, if it stays active, it could lead to more damage. So, a prominent hypothesis in the field is that this unresolved inflammatory response from the cells of the brain that fight the stroke damage become activated and then create these maladaptive immune responses that compromise long-term recovery. So, looking at functional recovery as well as integrity of brain structures that are left. And this could then lead to cognitive decline in dementia in about 30% of stroke survivors within a year of the stroke onset. But now let’s actually hear more about what stroke and stroke recovery directly from one of our guests. So, Denis, would you be happy to tell us about your stroke? For example, when it’s happened, some of the symptoms of onset. From yours and Maisie’s perspective as well, that would be great. And, if you received any treatment when you got taken into hospital.

Denis:

Okay. Thank you. My stroke was, as I say, the 28th of March 2019 and it was just after I had gone to bed in the evening, my wife thought there was something wrong and she queried it and within a minute I had become FAST positive. FAST as what is used in the UK to describe the symptoms of stroke. It is facial weakness, arm or leg weakness. The inability to hold both arms out if one falls. The S is for speech, whether it be slurred or is dysphagic. And, the T is then time to get the emergency services. In the UK this stands for dialing 999, but it is to get ambulance or medical help. So, I was FAST positive, and the family immediately called the ambulance. I was taken in under blue light to the hospital where I was given CT scans and tested for swallowing.

All the symptoms of stroke were there. So, as it turned out I was within the right time scale for thrombolysis. By the time of my stroke to the admission of the drugs, it was within the four-and-a-half-hour window. So, I had thrombolysis and even within 10 minutes of the hour of getting that pumped into my veins, I’d very much got better physically. The arm and leg weakness had disappeared as had the facial droop and the speech was on its way back from that. I was then taken up to intensive care for overnight and into the stroke unit, but I was released from hospital within 40 hours and sent home.

Subsequently, there has been some work. They discovered I had asymptomatic atrial fibrillation, so I’ve had ablation to correct the AF within my heart. But, my doctor was offhand and said, “Oh, if I had a list of patients who I thought would have a stroke, you weren’t very high on that list up, Denis.” And things like that. And I have never seen a stroke nurse. There are a lot of things now that I’ve learned that I should have been speaking to the stroke nurse about, but I’m sure that Maisie will tell you about the aspects of home care that weren’t about the physical side of the stroke, but were about the emotional and the other effects that can happen through stroke. So, Maisie, you can be as honest as you like.

Maisie:

Yeah. Well, I would say very tired, grumpier as the day goes on. We’re a very sarcastic family. Me and my brother and sister, we always wind each other up very sarcastic. My dad doesn’t understand that sarcasm anymore. He goes from 0 to 10, like shouting at us to stop, where we’re just having fun. When you’re talking to him, you can sometimes sound very blunt and not responding to your tone. He is completely different in his tone, but it is like he doesn’t mean it in that way that he’s saying it, but it comes across quite brutal. And what else?

Denis:

How’s my practice of door slamming improved?

Maisie:

Oh, and coordination is not very good. We were walking down to the rugby last week and walked into a few doors, fell off a few curbs. Especially when you get tired, your coordination and balance go out the window. You can tell when dad is tired because his speech goes, he gets quite sore speech, and just walking becomes quite a chore for him. And even just postural, you lean forward trying to keep yourself upright. But other than that, you seem to have recovered. It is always just these things that when you get tired, these are the things that just creep up.

Dr Gaia Brezzo:

Yeah, absolutely. So, thank you both so much for sharing that experience. It obviously goes with without saying, it sounds completely life changing. So yeah, we really appreciate sharing that with us. And just to follow on from that, both Denis and Maisie, so a lot of people that research stroke or even the public would think that you would be left with some physical disability. I know Maisie, you touched on coordination, which obviously goes into a motor realm, but a lot of people might still be left with an arm or a leg weakness or a facial weakness. And we could say that that hasn’t been your case, Denis, if I’m correct in saying that.

Denis:

Sorry, just… Absolutely. I’m very blessed that I was the right time to get thrombolysis. The figures are, there are around 9 million people in Europe living with physical disabilities from stroke, and I am very blessed that I am not one of them, but I still know that I’ve had a stroke. There are times I’ll meet people for the first time, and I mention about being a stroke survivor and they go, “Oh, you don’t look like it.” “No, but I know I am.”

Dr Gaia Brezzo:

Yeah, yeah, I know. And I should have maybe mentioned for people are not familiar. So, the treatment that Denis received is something that dissolves the clot, that’s been embedded into his blood vessels. Obviously, this would then restore blood flow and allow that brain area to be reflooded with new oxygen and nutrients that have been carried into the blood. And as Denis mentioned already, there’s a very short window for people to receive this treatment. So, there’s not a lot of people unfortunately that can benefit from this that I’ve had a stroke and just emphasize that we definitely need more treatments for this because they’re few and they have very specific windows which can be acted on. And this is a big area of research that is going on to try and find therapies that can definitely have a broader spectrum of when it can be acted on.

Denis:

One of the things that the stroke charities in the UK as well as the government are trying to promote is this, the FAST, the facial droop, the arm and leg weakness, the speech. And if you see any of these symptoms then it is time to get somebody to emergency service. I’m very fortunate that although I was in bed, I was still awake at the time. If I had gone to sleep and woken up four hours later with a stroke, then I wouldn’t have been a candidate for thrombolysis because they wouldn’t have known whereabouts in that timescale they were. And that four and a half hours is important for making to make the best outcomes for stroke survivors where it reduces the physical disabilities that can be affected.

Dr Gaia Brezzo:

Absolutely.

Mila Redzic:

Yeah. No, for sure. And as Gaia mentioned, the motor component of it in physical disabilities. In research as well, we often use it, I guess, as a readout of if something’s worked or not. And that’s where we focus when we speak about stroke recovery. But I know based on what you just told us and from our previous interactions that you didn’t perhaps have as much of the motor impairment but that you had some other areas where you struggled a bit more with. So, I was just wondering if you could share a bit of that with us and comment on how you feel when… Things like that happen when people are like, “Oh yeah, you don’t look like you’ve had a stroke.” And is there some other area you’d like us to focus more on?

Denis:

I think for me, as somebody who’s heading towards their mid-sixties, I’ve had to learn new emotions for the first time in 50 years. We always think that teenagers are the point where you learn new emotions. Well, I’ve had to learn with anxiety. I’ve had to learn how to try and cope with anxiety. I still don’t have that one quite right yet. And that puts strains on your family, the emotional side of stroke. I can sit and be watching the news with tears running down my eyes because of what’s on the newscast and that’s something new for me, the physical showing of emotion. The fact that when you’re doing things like this…

I’m speaking now with government employees, with government parliamentarians at some point and that puts a stress on it in you’re thinking of, “I know that word. What word am I looking for?” And you’re having to think how to rephrase the conversation because you cannot think of a simple word. I could be looking at the laptop where you are using for today’s recording and think, “I know I should know what it’s called, but because of the pressure of all the other things in the environment, I cannot think of the word laptop,” or I choose the wrong word.

So, it’s learning all these things. As Maisie has already alluded to, my reactions, emotions to the family have changed. I have slammed more doors in the four years after my stroke than I’ve slammed in the 50 odd years before the stroke. And that was just, you must learn to accept that the person you are post-stroke is not the person you wear five seconds before the stroke. You have changed completely. There is a grieving process that some stroke survivors will talk about it. You have to grieve for the person you were before you can accept the person you have become. And that’s an emotional challenge to people as well. So, it’s all this bit of other things that, my motor skills, if I’m tired, I become clumsy. I will drop things, and things like that. So yeah, there is a whole new person that you have to learn to be after your stroke.

Now I’m fortunate I can go out and have a walk, I can talk. There are stroke survivors that are learning how to live life without the basic functions that they had five seconds before their stroke. So that is where when we’re talking about research now is, the physical side, everybody understands you need rehabilitation, you need, “Oh, can you write? Can you sign your name? Can you do all these things?” That is important. But also, the important bit is learning what is happening in the brain after a stroke. Because stroke fatigue. We’ve been involved in giving advice to the Scottish government work employees and also Scottish government itself saying it used to say Scottish government in their pathway for stroke. It was a case of that stroke fatigue could happen.

It is now saying stroke fatigue is commonplace. It’s not a big change in words, but it’s a big change in emphasis. And that bit of looking, nobody understands what causes stroke fatigue. Why do I still four years after my stroke, still suffer from stroke fatigue. The brain hasn’t got any better on that one. So, when you both, Mila and Gaia, are talking about what are the symptom or similarities between stroke and dementia, it is that bit of what is actually happening in the brain because, yes, physically we’re fine, but it’s that whole change in what your brain function has been post-stroke.

Dr Gaia Brezzo:

Yeah, absolutely. So, my work has come about from a consultation from actual carers and stroke survivors to say, what are your top priorities? Because I think it’s recognizing in stroke research that something physical, like a motor impairment, is really easy to see. So that’s easy to target in a way because you have an outcome of what’s your baseline at this minute in terms of function and then how can we improve that, and we can measure that again. Something that’s cognitive or emotional is a lot harder to try and quantify in a way. And it’s also less overt than something that’s a motor disability in a way. So, it’s about shaping how people think about recovery in stroke beyond physical. And it’s also recognizably a lot harder to try and study because, as I said, they’re more subtle than a motor deficit, which is quite easy to see if you meet someone that’s had a stroke.

Mila Redzic:

It just sounds everything that you told us, Denis. Thank you so much. Like a very, as Gaia said before, a life-changing experience and like a very long, long recovery journey that is full of ups and downs and everything. But I would just like to bring back to the point that you mentioned before that your life changed overnight and that after the stroke you were not the same person you were five seconds before the stroke and this concept of, as you said, “The self-grievance process, learning to live with your new self.” So, I was just curious, Maisie, in terms of your impressions on that because it, I’m guessing it must have left a huge impact on yourself and the rest of your family. Could you share with us a little bit on how it’s affected you?

Maisie:

Yeah. So obviously we’ve had to learn how to adapt to dad’s maybe new emotions and new anxieties. Definitely took us a good few months to find a way that works best for all of us and especially dad. Especially like him when he is anxious, he’ll just can change completely. It’ll be up to ninety-nines; he’ll start like pacing. You try your best to find the words to try and chill him out, but you just must find your own solution because dad’s trying to find a solution but obviously, he’s not able to find one because he is so anxious. So, you just must try and guide him in the right way.

There was a time we were in Switzerland; it was a couple months after your stroke. We were trying to find out how to go into the city, the best way to get into the city, and dad was like, “Oh, just go on this bus. It was going to cost us a hundred euros each.” My brother was Googling, and dad was up to ninety-nines, so he had to walk away. So usually, it’s like dad’s that works out how to get places on holiday. So obviously we’ve had to adapt and change. Dad gets too stressed about it now, so we’ve taken the role. And when he gets tired, you just maybe hint at going to bed. You’re quite good.

Denis:

I’ve learned that one.

Maisie:

Yeah. Because when he gets tired, you’ll get grumpy and grumpy, or you’ll get that frown. It’s a very characteristic frown, lots of lines. So, when he gets that frown, you just push him to go to bed. But one of the main things that we’ve tried not to do is put words in his mouth. So, when he is struggling to find the words, we used to at the start try and help him and find the words, but he would get more and more frustrated with that.

So, we’ve just let him do it himself. It might take a while. We know what he’s trying to say anyway, but we don’t want to make him feel like he’s struggling. So, we just let him be. And eventually it may feel like minutes from trying to find words but it’s not. So, we just need to always sit back, just be patient and wait for him to say the words that he is looking for. But yeah, a lot of patience that we’ve had to work on, but in the end, I think we’ve found a way. We’ve all cope, to try and cope with it.

Dr Gaia Brezzo:

Yeah. No, thanks so much again for sharing, from listening from what you were saying, Maisie, it sounds like you almost have to learn to communicate again in terms of some things that Denis might express differently or if recognizing maybe when he is anxious or when he do wants to go to bed and he might not express that, but there’s small triggers that you might pick up that obviously are new to before Denis you had your stroke, which is a lot to try and refocus and have everyone on board. So that sounds like quite a big challenge in terms of emotional for all the family really.

Maisie:

And especially with me. I live at home. I’m the only one that lives at home now with mom and dads. And I usually lying on the couch on my phone, and I don’t really pay attention to it, but obviously when dad’s trying to talk to me or something just keep my head down and still on my phone and he is just staring at me and being like, “Maisie.” And I’m like, “I’ve answered you.” But obviously I’m not communicating to him how he wants. He wants me to look at him and just say like, “Goodnight,” to his face rather than saying, “Goodnight,” to my phone. Yes, we’re definitely as a family had to work on or communication after the stroke because it’s completely changed.

Mila Redzic:

Yeah, it sounds like you’re almost processing two things, the stroke, but then also there’s change in the family dynamics and the relationships.

Denis:

And I think from a stroke survivor’s point of view, you think you’re doing everything correctly because that’s what your brain tells you, you’re doing is correct. And in fact, it is probably that bit of it is not correct and it’s the people that love and care for you that are telling you it’s not correct. So, to an extent, it can be a constant spiral of, “Am I right? Am I wrong? And why am I wrong?” And whatever. And that’s all part of what we were talking about, that the brain understanding, trying to learn that this is a new norm, and the old norm isn’t going to happen again. And it is things like after this podcast, everybody else will go away and do things. I’ll probably go for an hour sleep because of stroke fatigue. And I now know these things are what’s needed, and we’ll do it. Whereas at the start it was, “No, no, let’s do this. Let’s do that.” Whereas now it’s, “No, I’ve been on for an hour getting the podcast all organized. And I’ll just go for an hour sleep.”

Dr Gaia Brezzo:

Yeah, I guess it’s adapting to your new limits and pushing the boundaries almost at the start to see how far you can push yourself without obviously penalizing yourself in a way. And just getting to know, I guess what you said before, a new self because you are different compared to before.

Denis:

Yeah. And it’s how your brain copes with different stress levels. I mean I’m a retired accountant. I knew stress at work and had my coping mechanisms. It’s different now. Things that stress you are less of a magnitude, but they cause you the same amount of stress and it is just coping with that side of it as well.

Mila Redzic:

I was just going to say that obviously you can never be prepared for something like this, but these new limits and these things that you experienced, did you ever hear about them from someone? Either going to your doctors in the hospital or the family practitioner or they may see you. I don’t know if you managed to find maybe some support groups online or in person. Was there anyone to guide you a little bit through the process or was it for every single thing you had to reach a boundary and then say, “All right. I need to stop here. I can’t do this, or I need to do that”?

Denis:

I think where I am now with being involved with is part of the voice of lived experience. Yes, I understand where I am now. My first real aspect of getting to understand me was actually taking part in, and this is a big misnomer, the Mild Stroke Research at the University of Edinburgh. I understand that it’s called “mild stroke” because there are no motor deficiencies, but it is still a misnomer calling it a mild stroke. Every stroke is unique, it is not mild, but that’s how the whole stroke side of aspects are categorized. And it was actually just working with some of the stroke research staff at the University of Edinburgh that I came in across a lot of the things that I thought was just me. And I think it’s from that point that I’ve developed into here we are four years later now working with both you and Gaia and others. And it certainly been an interesting journey. Not always smooth.

Dr Gaia Brezzo:

Yeah, no, absolutely. I think it’s about recognizing that, again, going back to something that’s very overt like a physical disability, an emotion or a cognitive disability is just as important as a physical one. And there’s definitely needs to be more support, more recognition about these other aspects of recovery that go with stroke than just the physical. And I think, yeah, hopefully that will come in time. There’s already a shift in the research of how the funders are thinking about these things. Obviously involving people like yourselves, Denis and Maisie, carers and family of stroke survivors to tease out basically how can we actually help you as opposed to we’ll follow on from decades of research that we’ve already done. And that leads very nicely into our next question. So, thinking a wee bit more broadly, so one of the topics we wanted to talk to you both about today is this interaction or this need for more interaction between people like yourselves.

So with lived experience and researchers, like myself and Mila, or even other stakeholders and the idea that how this partnership can be invaluable in terms of exchanging knowledge and helping us researchers form new ideas, obviously make more science happen, that which would of hopefully impact you guys because ultimately that’s what we want to do. And I know, Denis, you mentioned already you have experience of working with government policymakers and health policies and researchers, of course. Do you want to maybe share with us one or two examples, maybe one or two experiences that you found most valuable or most rewarding that you’ve interacted with stakeholders or researchers?

Denis:

I think there is a number of highlights. One was listening to one of the psychological clinicians talking about the work that they are doing with stroke patients. And one of the highlights has been working with one of the psychological clinicians. And their view was that, while there are a number of clinicians in Scotland working, the actual going by the ratios, it should be quadruple that number of psychological clinicians in Scotland than there currently is. But that then brought us around to actually as our lived experience group talking about it. And we actually felt that the research and the level of psychological care should be brought down to the nursing staff as well, is that they should be asking about your mental health wellbeing as well as saying, “Oh, can you walk three phases? Can you move your fingers?”

And it’s all that bit of bringing the actual care, both of physical and mental well wellbeing down to really the tier one, tier two level rather than referring it up the way. So that was part of, one of the highlights of actually starting to look at where mental wellbeing comes into care certainly within Scotland, and that is now to be spread. At the moment, it is probably a postcode lottery across Scotland that we hope to move an away from that aspect of, it just depends on where you live, what your mental wellbeing service is, to actually we have a standard across the country. For me as well, other things have been actually having very open and honest conversations with carers, with clinicians, and other stroke survivors about just what all we are going through.

And all of us know that each stroke is unique. No one stroke survivor has an identical journey to the next person. So, it is not a one-answer-fits-all-questions type of condition. And it’s making sure that each of us gets the support that we need, whether that be through rehab, through non-cognitive skills, even as we’ve talked about, on sexual wellbeing as well. Because all of these, the motor skills, the emotional skills, the sexual wellbeing as well are all things that can affect a stroke survivor and also their carer. But the other side is, that the things that we’ve talked about from a carer’s point of view, is a lot of the carers are the wife, husband, or partner of the stroke survivor.

How do you split between primary carer and being partner? There’s a lot of highlights. I’m not quite sure of, yeah, walking 10 miles is a great highlight for me. But for some people walking 10 meters is a great highlight. So, it’s that bit of what actually is a highlight. It depends on each person, and it depends on their stroke, what they set for goals. And highlights for me, there are a few. A lot of it is now ensuring that if somebody in the future has a stroke, that they actually get a better outcome than I do. And if one person gets a better outcome from me than all of what I’ve done in the last three years has been great. The first year will write off because you’re just, first year after a stroke, if you excuse the terminology, you just wonder what the hell’s happened to you.

Mila Redzic:

No, it’s incredible everything that you do, Denis. And you just keep going and going and getting involved in more and more things. So, can I ask you, what is your secret? How do you stay motivated to do all these things?

Denis:

Part of it is I can’t say no, which the family shouts at me quite a lot. But no, I look at things that I used to do, and they are no interest to me. I used to spend many hours a week with a youth organization and I’m looking to really finish that now. I’m spending about two hours a month doing it and it’s not a motivation to me now. My brain has changed as to what motivates me. And it’s now yet stroke, working with a local charity, trying to relieve food poverty, and my own church are the three things that actually make me motivated now. And all the rest is just noise. And I don’t control the noise, so I actually don’t want to be part of it now.

Dr Gaia Brezzo:

No, it’s amazing because from what you were saying it sounds you’ve managed to turn something that’s obviously quite a negative experience to do something really positive, not just for yourself but for other people. Obviously as you said, thinking about the future, which I think anyone would say that’s a very admirable goal. So, thank you so much. Some people might have a very different outlook there so like, “I’m just going to carry on and focus on my recovery,” and that’s their personal choice. But the fact that you’re motivated to help people and get involved is really, really inspiring and admirable.

Mila Redzic:

Especially despite the stroke fatigue because you were saying how you struggle with stroke fatigue and then to then go on and do all these things was just incredible.

Dr Gaia Brezzo:

Yeah, absolutely. Do you think, Denis, that this has helped your recovery in a way? Obviously being involved and utilizing cognitive skills or even emotional skills to interact with people or saw different problems, do you think that’s helped you in a way recover more fully than if you just said, “I’m just going to stay at home and focus on me”?

Denis:

Absolutely. If I had stayed at home, one, I would’ve driven myself mad and, two, I would’ve driven the family mad. And it is a release for me and it’s also just who I am. I’ve always wanted to be involved in helping other people. And it is great now being involved with people who fully understand what it is to be a stroke survivor. So, I can talk to them, and we meet at least once a month, and it is full and frank discussions. And I realize for a lot of things, I am blessed. And the things I’ve got, actually on other people’s scale, I’m about five or six, not 10. And they’re still doing it. So yeah, it’s great. With the researchers, my view is just for both you Gaia and Mila and others that I’m going to be involved with is that bit of, I hope that I bring across why it is so important to understand what is happening in the brain.

Because you both have met me and at the start of the meeting physically you wouldn’t have known that after four hours of being shown your research around the research lab been chatting for four hours, you saw the tired me. And that is how it affect; a half day’s work has on people. And if that was a highlight, albeit maybe not what a half day’s work is not a highlight to a lot of people, but to a half day’s work of showing you what I can look like at two o’clock when I arrived to when I left just before six o’clock in the evening. I even know there was a significant change in that. So, it’s these things, yes, have helped me understand me, but they’ve also given me a purpose of why I want to get involved in what I’m doing, and I’m thoroughly enjoying what I’m doing at the moment. And I just need the family occasionally to keep going to me it’s like, “No, dad, you’re not doing this. No, dad, you’ve got too much.

Dr Gaia Brezzo:

They keep you on the right track. That sounds reasonable to me. And speaking of research, Denis, since you have mentioned it. Obviously, I know you mentioned you came to the lab to see me, Mila and I, we went through what we do here and obviously you shared your perspective on like, “This is how it’s affected me.” So, it’d be great to see, hopefully I’m not paraphrasing, so please do correct me if I’m wrong, that you’d want to see more research into fatigue, the emotional changes within stroke and actually understanding what bits of the brain could be targeted to resolve that. So, I’m going to turn to you now, Maisie. On a similar note, do you think there’s more research or what would you like to see researched on a more family carer side of things? If you think it does need more support, what would you like to see done?

Maisie:

Yeah. So, there’s definitely more focus on when the stroke survivors got like a physical weakness. So, I did my dissertation in uni on the impact on the family when a stroke survivor doesn’t have any weakness. So, they’re basically not back to baseline, but pretty much they’re normal. And that was the first time that I found things that related to me and my family. And I had to go through academic journals just to find people that have gone through same experiences as us. So, it was quite good obviously doing my dissertation on that topic. But yeah, so it would be good for more research and more support for families of stroke survivors that don’t have any physical weaknesses or any impairments at all because I don’t think there’s many out there. I have not come across any.

Denis:

Just on that. The two charities in Scotland do provide peer support groups and care support groups. But actually, when the stroke survivor leaves hospital, you get a lot of information about things that aren’t relevant, or it is given to the stroke survivor, and they are in such a state of confusion at that point that you need to tell them about four or five times what is actually being offered. And not just the clinician is saying, “Oh, you can go home now. And this is some information for you.” Oh, you hear it, you’re going home, and you forget the rest. And it’s that bit of how we make sure that… The resources are out there, but it is how do people not spend hours trawling the internet to look for what care or support is local and whatever.

But it’s also the aspect of everything that is said to the general public, certainly in the UK is about the physical aspect of stroke. FAST that we mentioned at the start is about face, it is about arm and legs, it’s about speech, it’s what people can see within the first 10 seconds of them meeting you. What is not known to the public in general is that the effect of new emotions, of your anxiety, of just all the non-motor side, the cognitive side, which is a deficiency in the public knowledge of stroke across the UK.

And it’s also where we need to bolster the rehabilitation side of stroke. And the physical side is you’ll get an occupational therapist to come in and show you how to do all the skills that you need to do to get home. And that’s climbing with stairs, being able to put the kettle on. And I say this on the basis that Maisie’s sister is an occupational therapist working with elderly mental health, so that’s dementia sufferers in the northern part of Scotland. And it’s all the physical skills and it is not about for stroke survivors. There is a depletion in service on what is the other side of it, the things that you don’t need to be able to do to leave hospital, like climb stairs so you can get to a toilet, like make a cup of tea, like being able to put the microwave on. Some of us can manage that, but we can’t manage other things.

Dr Gaia Brezzo:

Yeah, absolutely. I think it goes back to, I guess the common theme of today that it’s about a shift in the perception of what stroke is that’s more of a complete picture. It has other elements apart from motor and obviously the effect on the individual, but as well as the family that has to be recognized and things to be implemented to support that.

Mila Redzic:

Even I guess thinking of how some of these symptoms might overlap across different diseases, because at the moment I think we tend to box things mostly related to stroke, memory problems, dementia and so on. But I guess a lot of these resources and groups could then be shared if we just viewed it a bit more well-rounded.

Dr Gaia Brezzo:

Yeah, absolutely.

Mila Redzic:

Yeah.

Denis:

Oh, yes. My memory is not as good as it was, and I’ve probably done it in this podcast, but chosen the wrong word from the library to when I’ve meant to say something and I’ve used a word that sounds or similar, but no doubt I’ll be excused to that.

Mila Redzic:

Yeah. No, no doubt. With these kinds of interactions, the future of stroke research is looking bright. So, I think just as a final point, we go into the topic of future. What’s next for both of you? Just in terms of things that you plan to achieve, maybe some of your involvement with these lived experience groups or any other kind of level.

Denis:

I think for me it’s carry on where we are. There is part of me, and I’m going to, at the end of the year, take a bit of a step back from the lived experience group because my stroke was four years ago. Things move on, and there has to be new space for new stroke survivors to come in and give their experience and with a changing environment in stroke care. There’s part of me that thinks, “I’ve said enough, and I’ve passed on information, but I’ve also been involved in a group that has had a significant input into to government thinking.” Will I carry on supporting research work and stuff? Yes, I will do, because I’m a stroke survivor and I want to be involved in the… And there will be other opportunities that will come up for working with people like yourselves, Gaia and Mila. So, I look forward to that. I don’t expect to be the voice of lived experience working and doing as many hours for all of the rest of my life. So, I’m not quite sure what the next challenges will be. We’ll wait and see what comes along.

Mila Redzic:

For sure. And how about you, Maisie, what do you think the future holds for you? And what are your hopes in terms of the future of stroke research and rehabilitation?

Maisie:

Well, to keep carry on supporting my dads in everything that he does and obviously tying him to bed when he needs to. We’ve got good links to the Scottish charities for stroke. We keep fundraising for them and just hope that research keeps moving along, especially for the mental health side of stroke. Just see what the future holds basically.

Mila Redzic:

Yeah. Thank you. Well, it was a real pleasure hearing from you both, but I’m afraid this is all we have time for today. So, if you just can’t get enough of this topic, please visit the Dementia Researcher website where you will find the full transcript of today’s podcast. Also, our biographies, blogs, and much more on this topic and also on the topic of dementia research. I would like to thank our incredible guests, Denis and Maisie. I think we touched on so much today. We spoke about so many topics. And as we said, importantly, even though we centered it around stroke, these are really things and conversations that are important ones to be had in any research setting, we think. And yeah, we are Mila and Gaia, and you’ve been listening to the Dementia Researcher Podcast.

Speaker 1:

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