Emotional and personality changes

Episode 17, 5 July 2018

Having a stroke can affect your emotions and personality, and sometimes these changes stick around. Many people also experience emotional lability, which can make you laugh or cry for no reason. In this podcast, we talk about the emotional and personality changes a stroke can bring, and what you can do to cope with them.

Our guests are Associate Professor Maree Hackett, Program Head of Mental Health at the George Institute for Global Health; stroke survivor Jenny Ferrier, who has herself experienced emotional changes; and occupational therapist Kirsty Cole, from StrokeLine.

Podcast transcript

Announcer: Welcome to the EnableMe podcast series where we bring together stroke survivors, health professionals, and researchers providing you with practical advice to enable you on your journey to reclaim your life after stroke.

The advice given in this podcast is general in nature, and you should discuss your own personal needs and circumstances with your healthcare professionals.

You can join the conversation at enableme.org.au. This series is presented by Australia's Stroke Foundation, working to prevent, treat, and beat stroke.

Chris: Having a stroke can affect your emotions and your personality, particularly in the short term, but sometimes these changes stick around. And these changes - they include things like emotional lability, which can make you laugh or cry for no reason - they can really affect your life and your interactions with others.

In this podcast we're going to talk about the emotional and personality changes a stroke can bring and what you can do to cope with them. We'll speak to one of our regular guests, psychologist Associate Professor Maree Hackett, and also to StrokeLine's own Kirsty Cole.

But first, we have on the line Jenny Ferrier, a stroke survivor from Tasmania. Jenny had her stroke six years ago, and she's a valued member of the EnableMe community and an advocate for stroke at the state and even the international level, with her story being selected for an exhibition at the World Stroke Congress in Montreal this year. Welcome to the podcast, Jenny.

Jenny: Thank you, Chris.

Chris: I've already mentioned there that you're world famous.

Jenny: Yeah. Sounds like it, doesn't it?

Chris: It's pretty impressive. For those who haven't heard it, could you please just tell us quickly your stroke story.

Jenny: Well, five and a half years ago, I had a massive stroke to my right side of my brain that left me totally paralysed on my left side. And I spent three and a half months in hospital altogether. And, believe me, I thought I would never walk again. Learning to walk was the hardest thing I've ever done in my life. So I spent six weeks in the stroke unit, which is a brilliant place at our general hospital here in Launceston, and then I was moved to rehab. And during the time in the ward I found I was being tearful a lot of the time, but by the time I got to rehab, six weeks later, it was full-on. I cried when I was sad. I cried when I was happy. I cried when someone came to see me.

And a feeling of totally out of control with it, so I think that it was a feeling of not knowing how I was going to react to anything, and I really didn't know until it happened. And I think at the bottom of it all was fear, and shock of what had happened, because there was absolutely no reason for this shock. It absolutely altered our lives in that very second that it happened. I lost control of my life and independence, and my husband lost his independence as he became my carer. And so it went from there.

Now in the rehab unit, it was a very astute nurse who said to me, “I think you need a little pill to help you with this.” And she talked to the neurologist who came to see me, and he put me on an antidepressant, and that helped enormously. And then when I thought that all my crying was just sadness, the loss of what had happened. Then when I came home I went to my GP, who has been my GP for 28 years and knows me very well. We talked about medication and I said, “But this is only sadness, mainly,” I thought. And he said, “Yeah, but it can slip from that into depression.” So I've been on medication. I have had times off it, but it's helped me brilliantly, it really has. It's sort of helped me with stabilising myself, I think. You know, not such a great range of emotions.

And after about two years I thought I was fine. I went off it for about two years until about 18 months ago I began to have a cluster of small strokes, and I went back to my GP and said, “I need to see the neurologist.” So I saw him, and he said, "Well, look, in the elderly if we get a cluster we go look at the heart." So I was sent to a cardiologist who was brilliant, and he found the problem. I had a hole in my heart. So that was a huge relief, because that was the source of the stroke. That's where it came, via the heart. So that was a huge, huge discovery, and a great sense of relief for me to know that, because up until that point I had a lot of anxiety sat on my shoulders from, well, a couple of years or more. And then as that's been relieved I'm not nearly so anxious about another stroke now, knowing where the big one came from.

Chris: And did that also help your other emotions, like the sadness and the tearfulness?

Jenny: Oh, yes it did. It did. It helped enormously. It helped enormously. It helped me to get more control over the emotions with not such a great range. I mean, I could still tear up easily, but there's not that great range of depth of emotion there as there was. And I was the person who always could express my emotions, but also had control. So all that was happening was totally out of character for me, and I think a bewilderment to my husband as well. He couldn't understand it. And the big thing was, Chris, that during that long time in hospital, no one used the word “emotional lability.” Now, it wasn't until I got onto EnableMe that I discovered, after talking to Diana, about the meaning of it. Now if the hospital had used that word and explained what it was it would have been a huge help to me, because I think that from what I read most stroke people seem to suffer with it in some degree. It's just that I thought I was out of control with it, well that was my big concern.

Chris: It's about knowing what to expect, then, and I guess if you know this can happen then you can plan for it and treat it. Is that what you feel?

Jenny: Yeah, I think that's part of it, Chris, it's the unexpected. You know, I'm not a person who likes to be in a big crowd, and suddenly I have to get up and talk to them about one issue, or whatever. And I think there's that fear of that, and that would keep me away from such social occasions in case it happened. I was given a big afternoon tea for my 80th birthday three years ago, and it was a shocking experience. I was absolutely overwhelmed, and I could not talk. Now that's not happened since that experience. Maybe it taught me a lot, I don't know, but it hasn't happened since. And that is what emotional lability can do, this feeling of overwhelmed-ness and out of control, that's what I hate about it.

Chris: Well, on the basis of your experience do you have any other advice for other stroke survivors out there?

Jenny: I would say go to your GP and have a good talk, and talk to someone on the StrokeLine, as well, that's really, really, really worthwhile doing. And I think the other thing is that bringing some enjoyment and laughter into my life is a big thing for me. I've got a wonderful family around me, and four grandsons, and that all helps. I've got a group of people I play Mahjong with fortnightly, and I've got back to my patchwork. It's about trying to get back to what you could do, as much as possible. That brought you joy and pleasure. And I would recommend that anybody talk to their doctor about medication. And also I found that keeping a diary, on a bad day I will sit down and just write to myself about all the rotten bits and how I felt and get rid of it then, or I don't bother keeping it, and that's also of great help. And I also do meditation, relaxation, and listening to music, and whatever. But I'll try to have some laughter every day about something.

Chris: And I think it's something that everyone can learn from. Well, thank you very much for speaking to us and sharing your wisdom there, Jenny.

Jenny: Really my pleasure, Chris, I hope that helps somebody.

Chris: I'm sure it will. That was stroke survivor Jenny Ferrier.

Announcer: Getting good results at every stage of your stroke recovery depends on getting good healthcare.

When you're in hospital, you need to know what to expect from your stroke team and what to do if something goes wrong.

And when you're out of hospital you need to know how to access rehabilitation services that you can afford, so you can continue your stroke recovery.

There's a lot of help out there, but the health system is complicated, and it can be tricky to navigate.

The EnableMe website can help, with information on how the healthcare system works for stroke and the right links to find the help that you need. We also tell you how to choose a good GP.

You can find all this by looking for "Getting good healthcare" under the resources tab under the EnableMe website. That's enableme.org.au.

Chris: And now we are joined on the phone by Associate Professor Maree Hackett. Maree is Program Head of Mental Health at the George Institute for Global Health in Sydney, and she has previously been a guest on our podcasts on depression, and anxiety, and stroke in your 20s and 30s. Great to speak to you again, Maree.

Maree: Thanks for having me again, Chris.

Chris: And also in the studio we have returning Kirsty Cole. Kirsty is an occupational therapist, and she can also be heard on the Stroke Foundation's StrokeLine. Hello, Kirsty.

Kirsty: Thanks, Chris. Hi, everyone.

Chris: Now, Maree, we have talked to you before, like I said, about emotions after a stroke, in terms of things like grief and loss, and also the fear of another stroke. Now, is it possible to separate these from the other emotional changes that a stroke might cause due to its effect on the brain?

Maree: I don't know if separate is quite the right word. There's all sorts of emotional changes that people experience after a stroke. Some of them come together, some people have just one symptom or one disorder, and some people are lucky and they don't really have any great emotional response to having had their stroke. But there are some that seem to be more disabling, some that people worry about more, and they are all potentially treatable or manageable, and people should be talking about them.

Chris: What about something like emotional lability, which is, I believe, the uncontrollable changes in laughter or crying after a stroke. Is that a particular effect on the brain, or is that caused by these kind of emotional impacts?

Maree: We don't know, is the short answer. It's a really appealing hypothesis, as I've said before, that say a stroke occurs in an area associated either with personality or mood in your brain, that if the stroke's there and there's a bit of loss of blood flow and function in the brain, then that might create an emotional response. So that's true, possibly, might occur, but there's no really strong evidence for that. So we think it's partly true, but it's also possibly combined with a genuine reaction to having experienced, you know, a life-threatening event, which is frightening and can trigger all sorts of threat responses like emotionalism.

Emotionalism has all sorts of different labels. It's also called pathological crying, or pathological laughing, sometimes - and people find this quite offensive - it's called emotional incontinence. It might even be called pseudobulbar affect. But they're all the same thing, it's a tendency to cry easily in situations where you wouldn't have triggered crying before. So it might be you're talking to someone who's come to visit you, and they say, “Goodbye,” and suddenly you're just in floods of tears. You didn't know that was going to happen, so you can't predict it, and you can't stop it. It just has to run its course.

For some people these symptoms are mild, they happen infrequently and then they just sort of peter out over six months. For other people they're frequent and they're really socially disabling. And a few people can experience, instead of crying, they'll have inappropriate laughter, which is equally a problem.

Chris: Okay, and I imagine with these sort of changes it can appear to affect ... when it affects the way that people respond to something it affects their apparent personality as well. Is that something that is connected to it, like any sort of personality change that people might observe?

Maree: Yeah, there's a whole lot of things that I think we use the sort of broad term "personality disorder" to group any of these emotional changes. If you're looking at a clinical diagnosis of a personality disorder there's sort of three general categories. The first category, people sort of appear odd or eccentric, to use layperson's terms. And the second category, people can be quite dramatic, emotional, or reactive, so if we're talking about emotionalism it might fit under that cluster. And the third group of personality disorders are where people are avoidant or very dependent, and that's where things like obsessive-compulsive disorder fit.

So in order to diagnose someone with a personality disorder you have to follow them up for a very long time and, again, we don't really have really good data and people who have survived a stroke to sort of say, “These are the main personality disorders that occur.” And also the labelling of things like emotionalism, depression, anxiety, fatigue, apathy, disinhibition, irritability, mania, they all might be sat under the same label. Some of them are very disabling for the person, and things like disinhibition, where people might vocalise things that they wouldn't have vocalised before, they might consider they're being more honest, and other people consider they're being a bit more rude, or where people are very irritable all the time, look more like a personality disorder, and they're very distressing for the family and for the carers, normally.

Chris: Okay, but those things don't count as a personality disorder as you would classify it, is that what you're saying?

Maree: Look, they all come under this umbrella term of a personality disorder, but they're just really not well-defined in people with stroke. So there's something that I probably should have qualified a little bit earlier, as well. We, in the general everyday language we tend use, what I'd call a mental health metaphor. So we might talk about somebody who's done something a bit strange, and we'll say, “They're completely mad.” We might look at somebody else who does something else, you know, they might say, “Oh, have you seen the way how tidy their house is? They've got OCD.” So we are quite quick to use these labels, but they don't relate to a clinical diagnosis or a clinical disorder.

But because we use these labels all the time in everyday language, it changes the way we think about these disorders. It almost trivialises them, especially for people who have a genuine problem. For people who worry a bit look very different from someone who has generalised anxiety disorder. Someone who has mood swings looks very different from someone who is bipolar. And people who are a bit sad aren't necessarily depressed.

So we, in this conversation, and when people who've had a stroke talk to other people, need to distinguish between what's become a big problem that impacts on their day-to-day function, means that they have difficulty being themselves and doing what they want to do, versus just everyday symptoms of feeling a little bit unwell that everybody experiences regardless of whether or not they've had a stroke, and it's not a disorder.

Announcer: If you, a family member, or a friend has had a stroke you know that it's just the start of a long journey to reclaim your life. You see, a stroke attacks the brain, the most vital organ of all. It means that everyday tasks can instantly become a challenge, and you need all the help and support you can get. And you'll find it at EnableMe, Australia's online stroke community. Connect with other stroke survivors, carers, and health professionals to ask questions, share stories, and inspire each other towards recovery. It's free and easy to join at enableme.org.au. A community message from the national Stroke Foundation and supported by this radio station.

Chris: Well, this sounds like a good time to ask Kirsty about some of the experience that she's had talking to people over the phone on StrokeLine and through EnableMe. Kirsty, do you often hear, I guess, reports of the kind of emotional and personality changes that Maree is talking about?

Kirsty: We do occasionally have stroke survivors and their carers calling to talk to us about changes that they've observed in personality and emotions after stroke and how this is impacting on their lives.

Chris: What kind of problems do you hear about?

Kirsty: When stroke causes personality change it can have a big impact on everyone in the family, as well as the stroke survivor. And these changes can affect how people feel towards their loved ones, and change the dynamic of a relationship, so we often hear about that. And family and carers might describe the stroke survivor becoming more irritable or impatient, and say things like, “He's not himself.” And they might describe, also, more frequent emotional outbursts where the person might say or do something that seems out of character, that they might not have said or done prior to the stroke. As Jenny and Maree have talked about a little bit already, some of the stroke survivors have called and described that it's challenging to manage their mood, and strong emotional responses, and controlling how that emotion is expressed, as well. And overall it sounds like it can be quite an isolating experience for stroke survivors and their carers, and they often feel like that their family and friends don't often understand.

Chris: Right. Now, I guess an interesting thing there, talking about how it affects carers, because we talked about emotional impact of a stroke, but I imagine their carers themselves are going to experience some strong emotions and some big changes in their lives.

Kirsty: And when carers are talking about the loss or change of a relationship, plans for their future might have gone out the window or have to be put on hold. Yeah, there's grief at that loss, and sometimes stroke survivors will feel like they're no longer the same person, and that they're no longer as independent as they once were, is quite a big theme. So yeah, and when we talk about grief it does leave stroke survivors and their carers often feeling sad, and angry, and irritable, anxious, and overwhelmed. And so during our phone calls we often talk about how important it is to reach out for help and that there's support available for them.

Chris: Okay. Maree, does that sound right to you about the carers experiencing their own grief and loss and needing that support?

Maree: Absolutely, and I think one of the most overlooked groups of people in the stroke experience is the family and the carers. They're suddenly taking on a role that they didn't sign up for either, and they're also often the first person or people to bring things like irritability and disinhibition, which is what Kirsty was talking about where they suddenly sort of have outbursts that they wouldn't have had previously, to the attention of the rest of the family who might not understand or might not have seen it, or to the healthcare professionals. So they're the person who're on the receiving end, and it's not uncommon for someone who is depressed after a stroke to also have a carer who becomes depressed after a stroke. And we assume that the care is provided for the person who's had a stroke, but they often attend the visits with their carer, and the carer, no one's there to treat them. They have to go and get their own help, and it's really important that they do, that they make sure that they log on to things like these EnableMe podcasts, and they look at the Stroke Foundation website, and use those resources for carers.

It's almost abnormal not to experience some mental health problems, whether you've had a stroke or whether you're a carer.

Chris: Okay, and what sort of things can be done, then, for people like stroke survivors or carers in these situations? Are there treatments that are available, or strategies that they can use?

Maree: There are definite strategies. Some have really good evidence behind them in the world of stroke, but often we look outside of the stroke literature to support treatment for psychological problems because our evidence base is limited. So for something like emotionalism, so if you're thinking about the symptom of crying, if I'm talking to psychiatrists they'll often say the first symptom to go after providing an antidepressant is crying, for someone who's depressed. Now, antidepressants in theory take about two weeks to start working if they're going to work, and most people, well about half of people, actually, switch to a different antidepressant for whatever reason, a side effect, or it's not working. But that symptom of crying goes very quickly, usually within 24 hours.

So there's very small studies, but the evidence is quite strong for things like antidepressants. And they also work for treating depression in people with more severe disorders, but a lot of people have these mild symptoms, things that might be called dysthymia, just sort of this ongoing general malaise. And for that you can access online resources, you can look at social support or talking therapies, and again, if you go through a group like the Stroke Foundation they'll be able to link you into resources. Beyond Blue, who deal with depression, can link you into resources. There's online courses you can do, things like signing up to moodgym or e-couch. And as the symptoms, if they do become more severe, or you first present with quite severe symptoms, people might look at a combination of talking therapies where you see a counsellor, or a psychologist, or a psychiatrist, and an antidepressant. And they'll fiddle with those medications for about six months, and if they're found to be working and your symptoms have resolved they usually continue those antidepressants for another six months.

Chris: Okay, there's quite a few promising options there. Kirsty, in the light of that, what is your top tips then that you give people for handling emotional and personality changes?

Kirsty: So I think, yes, it's key to not be afraid to ask for help and talk to your family and friends about what you're feeling. Consider joining a support group where you can share your experiences and talk about what's been challenging you. If you're a carer I think it's really important to try to take regular rest breaks, because if carers aren't able to get support or enough time away that they often call us in a state of exhaustion and frustration, feeling socially isolated and really stressed. So then this, then, impacts on their ability to deal with day-to-day, so there is professional support out there, a good starting point is to have a chat to your GP about referral to a psychologist, or talk to any of the health professionals you might already be linked in with. Yeah, and I guess, yeah, it's important to remember that each stroke survivor's experience is different and unique, and we welcome any calls to StrokeLine to further talk about your recovery and support after stroke, so give us a call.

Chris: Great, and Maree do you have any final advice for stroke survivors and carers listening?

Maree: I think the only other thing I'd like to say, is for people to remember that these symptoms are often transient. So even without treatment, many people, their symptoms will resolve. So if you receive a diagnosis of depression, or apathy, or fatigue, or emotionalism, it's not going to make you suddenly go and become an irrational person. It is what it is. You'll be looked after and treated for that disorder until it's resolved, but they may also say, “Go away and come and see me in a couple of weeks because I want to see if these symptoms persist.” And that's okay, that's actually recommended care. So make sure you do come back if that's what you're told, and make sure you do go back and see a healthcare professional. And if there's an acute, so your symptoms suddenly get worse before you're due to see your healthcare professional again, go back early. Don't wait.

Chris: Well thank you very much, and thank you both so much for sharing your knowledge with us. Now remember, if you want to speak to a health professional like Kirsty, you can call StrokeLine on 1800 787 653. That's 1800 STROKE. Or you can ask a question through EnableMe and get a response from health professionals and other stroke survivors.

And that's all we have time for today. If you like what you've heard please give us a good rating and review on iTunes or Apple Podcasts, as that will help lift us up in the search rankings so that other people can find our podcast. And thank you once again to our guests Jenny Ferrier, Associate Professor Maree Hackett, and Kirsty Cole.

Announcer: That's all for today's EnableMe podcast. You can find out more on this topic and continue the conversation, or listen to other podcasts in the series, at enableme.org.au. It's free to sign up, and you can talk with thousands of other stroke survivors, carers, and supporters. You can also suggest a topic or provide feedback on this podcast. EnableMe has qualified health professionals from StrokeLine who can answer your questions and give evidence-based advice.

The advice given here is general in nature, and you should discuss your own personal needs and circumstances with your healthcare professionals.

The music in this podcast is "Signs", by stroke survivor Antonio Iannella and his band, the Lion Tamers. It was recorded at Antonio's studio, which you can find out more about at facebook.com/studiofour99.

Announcer: This EnableMe podcast series is produced by the Stroke Foundation in Australia, working to prevent, treat, and beat stroke. Visit strokefoundation.org.au.