Depression and anxiety

Episode 9, 19 April 2017 

It's very common to experience depression or anxiety after a stroke, beyond the expected fear and early sadness. But as challenging as these conditions are, they can be treated, and recovery is common.

In this podcast, we talk about out why people experience depression and anxiety after stroke, what it feels like, and how to get help that works.

Our guests are:

  • Associate Professor Maree Hackett from the George Institute for Global Health, who conducts research on depression in cardiovascular diseases such as stroke.
  • Luke Webb, a young stroke survivor and stage, television and film actor.
  • Simone Russell, occupational therapist from StrokeLine.

 

 

Podcast transcript

Download the transcript

Announcer: The following podcast may contain topics relating to anxiety or depression, which may be distressing to some people. If you need someone to talk to, call StrokeLine on 1800 787 653, or Lifeline Australia on 13 11 14.

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.

You can join the conversation at enableme.org.au.

This series is presented by Australia's national Stroke Foundation and sponsored by Allergan.

Chris: It's very normal to feel strong emotions after a stroke, like being sad or angry or frightened, or even positive emotions such as hope and gratitude and love. The strong reactions usually get easier over time, but it's also common for people to have longer lasting difficulties such as depression and anxiety. These can make life for a stroke survivor extra challenging. But even so, they can be treated and recovery is common.

Today we're going to ask why people experience depression and anxiety after stroke, what it feels like and how to get help that works. We will be speaking to researcher Maree Hackett from the George Institute in Sydney about her research on depression after stroke, and we'll talk to Simone Russell from StrokeLine about getting support.

First though, we're lucky to have a genuine movie star on the line. Luke Webb is a Sydney-based actor who's performed on stage, television and film, including a key role in the Australian feature, Circle of Lies. Things changed for Luke when he had a stroke aged just 20 years old. However, he's since returned to acting as well as lobbying for more government action on stroke, most notably by riding his bicycle to Canberra to deliver a petition.

Luke, thanks for taking the time to join us.

Luke: Thanks Chris, it's great to be here. I don't know about genuine movie star but it's my pleasure.

Chris: Could you please start by telling us your stroke story?

Luke: It was back in 2013, I'd just turned 20, life was great, things were on the up, really happening. I took some time out to do a little bit of travel for about a month or so and I actually developed DVT, which is deep vein thrombosis, in my left leg. And that clot eventually went to my brain and that caused a stroke.

Chris: So, I imagine there were some big physical effects on you ,but how did it affect you emotionally?

Luke: You know, it's funny because whenever I talk to people—and I've done quite a few of these interviews over the past few years—one big thing about stroke is, a lot of people, and I'm not being cynical when I say this, but a lot of people really, I think only, and I myself I did as well, perceive that stroke had just physical disabilities that came with it. I think that not a lot of people realise that there’s a lot of mental factors that follow a stroke and that's not really talked about, a lot of people don't talk about it and I didn't talk about it for quite a while either.

You know, being that young and having mates the same age and always being fit and healthy, I probably couldn't tell you how it made me feel on this G-rated podcast but, more politely, it just made feel worthless and it made me feel like you're a nobody, you become a victim and you just feel the shame. They were the initial feelings I had, originally when it happened, I felt worthless and helpless.

Chris: Was there a point where you realised that you weren't really coping and that you needed to get some help?

Luke: You know what Chris, that came quite down the track. I'd had the stroke and then I started rehab and the whole time my mental state was in a really bad way. It wasn't until one day I really hit a brick wall and I realised that I needed help and things weren't going to be okay if I didn't seek that help.

Chris: What did you do then? What did you do to get that help, to get back on track?

Luke: I'm always a strong believer in, there's nothing wrong with hitting rock bottom because the only way up is from there, and I really believe in the fact that sometimes people do need to hit rock bottom before they can fix themselves again, and I kind of did hit rock bottom. I didn't talk to anyone about how I was feeling and I didn't share that with anybody. On the outside I had this huge smile and everything seemed rosy and everyone was so proud of how well I was doing in rehab but on the inside I was like a lost child. I used to curl up in a ball some mornings in bed and not want to get out of bed.

It's taken a long time for me to be able to talk about this, but eventually it got to the point where I started to have thoughts about taking my own life. Even thinking about acting on those thoughts and it was then that I realised, hey, I'm better than this. I realised, hey you know what? Yes I'm a victim, but I shouldn't be ashamed that I'm a victim, because I did absolutely nothing wrong for this to happen to me. And I think that's a first step for anyone who's a victim of anything, whether they're a victim of a disease or a crime. You need to realise and not be ashamed of being a victim because you did absolutely nothing wrong and pretty much you're just a victim for breathing, really, and that's when I realised, hey, I need help. When I realised, hey you know, I'm better than this, I need some help and I'm going to get through this, but I need to deal with this and I need to deal with this in my own way.

That was when I seeked help and I started to speak with a medical professional. But at the same time I also opened up to my friends and family as well, and that was like a huge weight off my shoulders, because they were all just so supportive, everybody was so supportive and I think that was a big thing as well. I don't know if it goes for everybody but for me anyway, it was are people going to support me, are they going to be ashamed of me? I was really embarrassed a lot as well. There's a stigma that comes with mental health as well. I'm a guy, it's fine, what are they going to think? Once you talk to someone about it, they were just so supportive and it's just such a great help when you've got that support network of friends, family, medical professionals who support you, it makes you feel like you're worth something and it really does make you feel like you can conquer the demon within.

Chris: What would you then, I guess, recommend to someone who's in that similar situation and can't, at that point, see that hope that you eventually were able to identify?

Luke: As blunt as it is, and I only say it because I did it for way too long, stop feeling sorry for yourself. Wake up one morning, realise that, hey, you're still breathing, you're still alive and things are never as bad as they seem. One thing that I really didn't realise, and someone put it to me quite a while after, and it's what I do tell a lot of people, is that no matter how hard you think you've got it off, there is always going to be someone else in the world that has it worse off than you.

So, my advice is to stop feeling sorry for yourself, you can take a horse to water but you can't make it drink so, you can have all the support in the world but nobody can help you unless you want to help yourself. You need to realise, realise that that's not you and understand that, work through it with yourself, with your family and friends and stop feeling sorry for yourself and go get help.

But first and foremost, don't be afraid to talk to someone, to let someone know how you're feeling, that you're not coping, because it's not your fault. As I said before, don't be ashamed to be a victim because there is absolutely nothing that you could have done to prevent this. In some cases there are, but in many cases, when it comes to stroke especially, sometimes it just comes down to the pick of the draw, quite a number of strokes just can't be prevented and they happen and you shouldn't feel ashamed or feel sorry for yourself or think, why me? Or think about what you could have done better in life.

Be happy that you're still alive and talk about it. Talk about it, talk about it, talk about it, that's the best thing I can say, talk to someone about it.

Chris: Well, thank you very much, that's good advice and thank you for being so open and sharing your story with us today.

Luke: No worries mate, thank you.

Chris: I hope we see more of you up on the screen soon.

Luke: I hope so too actually.

Chris: That was stroke survivor and upcoming movie star, Luke Webb.

Announcer: If you need someone to talk to, call StrokeLine on 1800 787 653, or Lifeline Australia on 13 11 14.

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Chris: Our next guest is Associate Professor Maree Hackett. Maree is Acting Director of the Neurological and Mental Health Division of the George Institute for Global Health in Sydney. She has a background in health psychology and epidemiology, and her current research is focused on depression in cardiovascular diseases such as stroke.

Thank you very much for joining us Maree.

Maree: It's my pleasure, thanks for inviting me.

Chris: Now, I guess one of the first questions, one thing we've been thinking about, is how common is depression and anxiety after stroke?

Maree: It's common, it's very common and in fact it's almost unusual not to have it at some point. So if you look at all the really good quality research studies that have been conducted on people who have had a stroke, in the first year about half of them will experience depressive symptoms of clinical concern and at any one time, if we just take a group of people who have had a stroke, about one in three have got depressive symptoms that would concern us. That number might drop, that proportion might drop to about one in four, between one and five years after stroke but that's a lot of people experiencing depression.

Chris: Given that stroke is itself such a traumatic event, there is bound to be many different emotions involved, but how do you actually decide it, when it reaches this clinical stage, that you can diagnose depression or anxiety?

Maree: Yeah that's a really good and a very important question. If I asked you, Chris, how you were feeling today, compared to how you were feeling maybe a month ago, your sleep might have changed so you might be a bit tired, your diet might have changed, there’s lots of chocolate and hot cross buns around so maybe you're eating more than normal or maybe you've given up some things because it's the lead up to Easter so you're eating less. So all of these things, changes in diet, changes in sleep, changes in your mood, changes in what you're interested in, they're all symptoms that go together to make up what we call depression.

Now, what's different from what people who have one or more of these symptoms, experiencing those on a daily basis, from someone who has clinical depression, is that, that combination of symptoms impact on your ability to be you. And by impact I mean it's a sort of a functional impact. You don't want to go to work or you're unable to go to work if you were previously in paid work. You don't want to get off the couch and make your meal, you might not want to leave your house, you don't want to see your grandkids who you used to have great fun seeing. You don't want to see your family perhaps.

So, the difference between someone who has lots of symptoms of abnormal mood that don't bother you, you're just aware that you're a bit tired today or you're a bit hungry or you've eaten too much, the really big key factor is that it impacts on your ability to be you, and that's what we call the functional impairment. Without the functional impairment, you don't have depression. Same as you don't have anxiety without that functional impairment.

Chris: I do want to ask you also about the cause, what causes these effects after a stroke. But just to let you know, with our podcast, we put out a call to our listeners for questions and of course for this one we’ve had some big ones and there have been questions about damage to particular parts of the brain from a stroke. One person saying they believe their stroke has affected their ability to feel positive emotions. Is this the kind of thing that can cause depression?

Maree: Look, it's a really appealing idea that where the damage occurs in your brain might put you at greater risk of experiencing depression or anxiety or other changes in your mood, and despite all the studies that have been done, there’s been no consistent evidence to show that we can say, look you've had a lesion—that's what we call the damaged part of your brain—you've had a lesion on the back right hand side and that means you're going to have depression.

The correlation’s just not that clear and that's possibly because, the way we find out where your lesion is and those imaging studies might still be a bit crude, or it might be that there’s multiple aspects that make up your risk of having depression. So it might not just be the damage. It's a big thing having a stroke, it's a life-threatening event that can drastically change your own impression of you and what you used to be able to do. There’s definitely a distinctive, what we call a reactive depression, something untoward has happened and you're reacting to that and in fact it's kind of normal to have that reaction after a big life-changing event like a stroke.

Where it becomes not normal is if that reaction or that low mood persists for a long time. Equally unpleasant regardless of whether there is, what we would call a biological cause for the depression versus a reactive cause, it doesn't change how we manage the depression. So in some ways, it doesn't really matter. We do think that if you've had a very bad stroke, there may be a bigger lesion rather than where the lesion is located, maybe that knocks out part of the mood centre, but again, those data aren’t very strong.

Chris: Okay, that's very valuable information to hear. I guess, given what you are saying about these kind of various causes and impacts, what is the connection, I guess the back and forth between these emotional problems and physical complications, things like fatigue and that sort of thing?

Maree: Well, maybe fatigue after stroke looks different from fatigue before stroke. If I just take a step back, and the way depression presents and the symptoms that go together to make up depression and anxiety, that looks exactly the same before stroke as it does after stroke. Depression is depression. With fatigue there is actually possibly a difference that occurs after stroke. So general fatigue, in what we call the general population, happens when you've overexerted yourself, you've been up too long in a day or your sleep has been interrupted, so you just feel tired. And when you have a rest or a sleep, that resolves your fatigue, you don't feel fatigued anymore.

After stroke, you get this interesting type of fatigue that is persistent and it's not resolved by having a nap or having a good sleep. So, the fatigue looks a bit different and then if you're fatigued you might be less likely to undertake your usual physical activities, and that leads you on to being a little bit more sluggish generally, regardless of whether or not you've had a stroke. Stroke, for a lot of people, causes functional problems, they have movement changes, they have mobility changes, it's not as easy to walk around. So that also impacts on their ability or desire to undertake physical activity, which in turn makes you more sedentary and more likely to be fatigued.

So it's quite a nasty cycle, and there is that use it or lose it mentality, that people who have fatigue will probably be encouraged by their clinician to maintain whatever activities they can and that's where you want to work with someone who knows what to do with someone who's had a stroke. And you can have Thai Chi delivered while you're sitting in a chair, you can do yoga from a chair. You don't have to be running round the house to get that physical activity to help with your fatigue.

Chris: Thinking about what you said there about how depression can affect people who haven't had a stroke as well, I suppose the other side of this is, carers can also suffer from emotional problems if the person they are looking after has had a stroke.

Maree: Yes, that's quite common too, and once again it's an understandable by-product. So not only has the person who has had the stroke’s life's changed, their carer—it might not be someone who delivers high intensity care, they might be their partner or family member who sees them quite often—can also experience depression. Same method of diagnosis, same group of symptoms go together to make up that diagnosis of depression. And then you're in the trouble where the carer also is dealing with their own issues and it can be quite a lot of frustration will develop between the carer and the person who has had a stroke and communication can be tough work. That’s why it's really important that your general practitioner knows if you're feeling down, your general practitioner knows if your partner's feeling down, and that people are quite open about the things they are feeling.

As I mentioned right at the beginning, it's almost odd not to experience some sort of mood problem after a stroke. You need to look for help if you're experiencing these things because you don't want a whole family of people who are at home because they are depressed.

Chris: Okay, well let's talk about the other side of it then. What are the treatments, what are the positive things that can be done?

Maree: Well, there’s a whole series of things that can start from very simple. So, if you've got access to a computer or a smartphone and the internet, you can do some guided self-help type of therapy. There’s online things, one of them is called MoodGYM, where you can login and it takes you through some of the same steps that a therapist would take you through, but this way you can do them yourself in the privacy of your own home at your own pace. So they'll ask you some questions that will help you have a look at your thinking patterns and they might suggest some ways to train you to think a bit differently and that might help with your motivation and your mood and your ability to get around. That's quite good for if you've got mild or low level depressive symptoms, so you might be feeling down but it's not having a massive impact on your day-to-day life.

Once your symptoms start getting to the point where you're really noticing that it's impacting on what you used to do, so you're not going to work or you're not eating properly, or you're not talking to anyone, then you probably want to go the next step up where you go and talk to your GP. And your GP has the ability to do a couple of things. One, they can organise for you to talk to someone about your mood, and for those who need to do that there’s Medicare-funded talking sessions that you can get up to 10 that are subsidised by the government, so hopefully money wouldn't be an issue and you are getting access to those services so long as you've got the services in your area. The talking therapies are really good if you get in early, when the symptoms are mild, because it helps you to change your thinking and your practices before the symptoms develop into something less manageable.

If your symptoms hit you and you're very disabled right from the start, your GP will prescribe you an antidepressant. There’s a lot of different types of antidepressants, some old ones, some new ones, they all do the same thing. Your GP will talk to you about how they interact with any other medications you're on, because that's important to know, and you also want your GP to tell you when to come back so that you can have your mood assessed, to see whether the dose needs to be changed or whether your medication needs to be changed. Because about 50 percent of people don't like their first antidepressant, so they go on to a different one and that might be side effects usually that would make them go back. Then, you also want to know at what point do I start to say, okay, I think my symptoms are gone, can we look at taking me off my antidepressant?

Chris: Looking at your research history, you've covered some of these antidepressant treatments as well, what kind of things do you look at in your research?

Maree: One of the things I do is look at the totality of the research that has been published. So I bring it all together in something called a systematic review. So you don't just get the results from one antidepressant trial, you get the results from 15 antidepressant trials. That's how I can say, we know that antidepressants work if you're depressed, you've got to balance out the benefit and risks, so we know they also cause some side effects, but they do treat depression to remission.

The talking therapies, if you're very depressed there's less evidence. That's why I suggested that if you get in early when your symptoms are mild, you can ameliorate your symptoms and lower the development or hopefully stop the development to full-blown depression.

We also do some other stuff where we’re providing in a current trial antidepressants to people immediately after a stroke, regardless of whether or not they've got depression. Because there is some evidence, in a small trial conducted in France, that showed that antidepressants actually improve your physical function, so you have less restrictions, you might be able to walk better, might be able to move your arm better or your face better after three months of treatment. There's our trial, which we've called AFFINITY, in Australia and there's a trial of the same design being conducted in the UK called FOCUS and another one in Sweden called EFFECTS. And we're combining all our trial results and by the end of all three trials we'll have over 6,000 patients to look at the data to see if that is true, do antidepressants improve physical function? In addition to that, we’re of course looking at the impact on depression and giving antidepressants as a preventative strategy. So far we haven't had any strong evidence for that.

Chris: Okay, well that is very promising, that sort of thing that you're looking at. I mean, I guess it's a reminder how amazing the brain is and how everything is connected.

Maree: The brain is one amazing organ. And the difficulty with the brain is we don't really understand all the connections, so it can be very frustrating if you're sitting in front of a clinician who aren't able to give you a straight answer to those questions like, has my stroke caused my depression?

Chris: Okay, well thank you very much for sharing this information with us, Maree. I'm sure that you are going to get some very interesting results out of your current trials.

Maree: Thank you, I really hope we do too.

Chris: Thanks for joining us.

Maree: Okay thank you.

Chris: Associate Professor, Maree Hackett from the George Institute.

Announcer: Setting goals is crucial to stroke recovery. Goals can be as simple as walking to the letterbox to check the mail, or bigger goals like getting back to work. enableme has a unique tool, where you and your carer or family can plan what you want to achieve, track how you are progressing and celebrate your successes. You can also connect with other people who set goals similar to yours and challenge or inspire each other. You can even set up a blog to write down how you are feeling and share your own story. And don't forget, our professionals from StrokeLine can help with personalised and confidential advice to help you grow stronger after stroke.

Visit enableme.org.au.

Chris: Finally today, we have our most regular guest, occupational therapist Simone Russell from the Stroke Foundation’s StrokeLine. Thanks for coming in again, Simone.

Simone: Thank you for having me, Chris.

Chris: How many of these podcasts have you done now?

Simone: I think I've lost count, I think I'm on a few.

Chris: Okay. Usually here, I ask you about your perspective as a therapist. So, we're talking about depression and anxiety, how often does that affect people's recovery after stroke?

Simone: Yeah look, I think it's something that comes up on a daily basis on StrokeLine and certainly on our website enableme. It’s prevalent for stroke survivors to experience depression and anxiety, or at least symptoms of it at some stage, both together or separately as well.

Chris: And does it affect their ability to participate in other parts of their recovery and rehabilitation?

Simone: Yeah, absolutely, I think as Maree's touched on, a stroke is a major life event or a major traumatic event and so it naturally does affect somebody's ability to adjust to life after stroke. And depending too on their level of physical disability, any cognitive changes, any communication difficulties, you've also got things like pain and fatigue that can also impact on someone's recovery and also exacerbate or alter someone's mood. So, it really can affect relationships, it can affect how someone might participate in rehabilitation, someone that's experiencing depression or anxiety may withdraw from rehabilitation or withdraw from some of their relationships.

There's that fear of a second stroke, or of another stroke, which we've talked about on a previous podcast, and that's something else that can also consume people when they're on that road to recovery that can certainly limit or impact on their ability to participate in rehabilitation. There is so much going on, they might be fearful of the future, it might be raising questions like, what's the meaning of life? Why has this happened to me? There can come a real loss or lack of control after stroke, which can definitely impact on people in terms of their mood and how they respond to life after stroke. So, it can affect really every area. It can affect their sleep, it can affect their appetite so whether they're hungry or not, you get both extremes, perhaps overeating or under eating, that also then affects your energy levels and ability to participate in rehabilitation.

So really, mood and depression and anxiety can affect every aspect of someone’s recovery.

Chris: As you said, it can affect the way people interact with the rest of the world, which I guess makes it extra hard because they need to talk to someone to get some help in this context. So how do people start that conversation, how do they speak to a health professional about getting some help?

Simone: I think it's a really big challenge for many people, not all. I see particularly men struggle to open up and talk about their mood and their feelings, that can be a particular challenge. I get a lot of callers from the female carers or partners, friends, family often on behalf of the male stroke survivor, so that is something that I think needs to change. I would say, look find someone that you trust in the team if you are actively seeing a rehabilitation team, perhaps go to that person that you trust the most in the team, we all have different relationships with different therapists and different family members and friends, so find someone that you trust to start with, that you feel comfortable opening up to. It may be the doctor, it may be the occupational therapist, it may be the physio, or the speech pathologist, just find somebody. It could be the nurse on the ward, or it may actually be a family member or friend where you start and then give them consent to actually raise it with the team as well.

If you're already in the community, you've finished your rehabilitation in the hospital, obviously the GP is another good starting point, which Maree also touched on and I think Luke as well. So really just, I think coming up with somebody that you can start to share that information, but someone that you know is going to have access to the right information and support and be able to direct you to the next stage of getting help. But starting a conversation is really important.

Chris: Which I guess… Conversation, that could make it extra difficult for people who might have aphasia after their stroke. They've got extra barriers then to getting support so, what do you say about that, about someone who has aphasia and can't communicate so effectively?

Simone: It's definitely, again, it’s very prevalent for people with aphasia or communication difficulties to experience depression after stroke. The risk or rates are higher for this particular group of people that do have communication difficulties. I think it's having that close working relationship with the speech pathologist and making sure that that stroke survivor has a clear communication style that they are able to have opportunities to express how they are feeling, and certainly the speech pathologist and the rest of the rehabilitation team would be keeping an eye out in particular for this group. But I think, making sure that the family and friends are able to communicate with them as well, so that they can actually indicate if there's an issue with their feelings through another means of communication, and that might be using a communication book, or pointing to a picture of feeling sad, that kind of thing, depending on the level of aphasia

Chris: What are your top tips then for stroke survivors, or for carers, who are coping with depression or anxiety?

Simone: So I think acknowledging, accepting and education is probably my first tip. So, really acknowledging that there is a challenge there with mood, whether that's anxiety or depression. And anxiety can show up as fear or worries, excessive worrying. I think the first thing is to really ask for help when you do acknowledge and accept that there is an issue, as I think today has been evident, the conversation, it's much more likely that you will have a better outcome if you seek help earlier on. And so while it might feel a bit scary to get help and to accept that this is a problem for you, but to not let stigma or anything like that stop you and to ask for that help.

There are many strategies, Maree certainly touched on some, but there's talking therapies, there's different techniques that you can use within talking therapies, like cognitive behavioural therapy and acceptance and commitment therapy, and mindfulness. But accepting it as well, that you have been though a major life event, so it is also part of the human experience when we go through these traumatic events that there will be an adjustment period and I think Maree termed it, the reactive sort of depression or reactive mood. I think that's really nice to understand that there might be a period where your mood is affected and if you get in early and have the strategies—and it could be self-help strategies like particular books or apps that can also help you get through if it is a mild presentation.

But you know, loss of independence, the financial pressures, you might not be able to work or drive, so there's so many different variables that can come into play when our mood is affected after stroke. So really just acknowledging that and accepting it and really starting from there.

So my second tip is seeking support, which we've touched on, talking about it, starting a conversation. There are many different ways you can access support, so it might be through the GP and getting a formal psychology referral, as Maree touched on, there is Medicare-subsidised sessions available to make it more accessible. Some rehabilitation teams have a psychologist on their team, which can be fantastic, or a social worker that may be able to provide some counselling and some support.

There's also, obviously, medication is another option to talk to your GP or to get a referral to a psychiatrist, if medication needs to be looked at. The other things, are things like online support, so enableme is a perfect example where many people come for that peer support. We have peer support groups out across Australia for stroke survivors, so attending a stroke support group, and carers are usually welcome at those groups as well. The other options, things like StrokeLine, we’re available from nine to five, if you wanted to have a talk about a more personalised sort of plan, or next steps about how to deal with your mood and where to go. We also have Lifeline and Beyond Blue are fantastic resources in the community, particularly Lifeline, that's a 24-hour service. So they're also other options to think about depending on the severity of your symptoms.

The other thing to note too is I guess with carers, Maree touched on, depression and anxiety after stroke, it's not just something that affects the stroke survivor, it can affect the carers. So I guess, having open communication between the carer and the stroke survivor. The carer may also want to access a mental health care plan through the GP and seek psychological support, because that's going to help give them the skills and strategies to understand perhaps why their partner, why the stroke survivor is behaving or perhaps responding or acting in certain ways, and giving them the tools and strategies to manage as well. There is Carer Gateway and Carers Australia as well for carers, which can be really supportive.

The support groups though, I think a lot of carers go along with their partners to that and that can be really helpful. Looking at it from a holistic approach as well, looking at sleep, looking at pain management, looking at fatigue all of those other things that can come into it, diet for example as well and exercise, are so, so important in stimulating the happy hormones, so it needs to be a holistic, rounded approach.

The last tip I would have, I think I say this nearly every time, is really to have kindness and compassion for yourself. If you have had a stroke or if you are feeling a little flat or a little low in your recovery, to have kindness and compassion that you are doing the best you can and if you follow some of the suggestions on the podcast that hopefully you start to see a little bit more of a trend up in your emotions and mood. But to take one day at a time and to seek that support.

Chris: Brilliant. Well, thank you very much Simone.

Now, you can of course ask your own questions of Simone and the other health professionals on StrokeLine, by calling 1800 787 653 or 1800 STROKE. And also if you have concerns after this discussion, that have been raised you can call StrokeLine in business hours, you can also contact Beyond Blue on 1300 22 4636 or beyondblue.org.au, or for urgent 24-hour support you can call Lifeline on 13 11 14.

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, that will help other people to find our podcast and give us a good feeling too, I think, which is what we are all about here.

Thank you again to our guests, Luke Webb, Maree Hackett and Simone Russell.

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 our website, enableme.org.au.

It's free to sign up and you can talk with thousands of other stroke survivors, carers and supporters. We also have 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 health professional. If you would like to suggest a topic or provide feedback contact us via the website enableme.org.au.

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 www.studiofour99.org.au.

This enableme podcast series is produced by the national Stroke Foundation in Australia with the support of Allergan.

Announcer: At Allergan, we know every stroke is different and so is every recovery. After stroke, many people have muscle weakness and loss of movement but you might also be experiencing tight muscles, or stiffness in your arms, fingers or legs. It's called spasticity. You might have muscles spasms or uncontrollable jerky movements in your arms or legs, changes in your posture, or unusual limb positions, and it can cause pain. It can be treated though. Physiotherapy or occupational therapy can help you adapt and improve your movement. There are other possibilities too, such as injections with botulinum toxin type A, electrical stimulation of the muscles, electromyograph or EMG biofeedback, and muscle-relaxing medication. What is important is to start your rehabilitation as soon as possible after a stroke and to discuss your goals and progress with your rehabilitation team at every stage.

Allergan is proud to bring you this enableme podcast.

Depression and anxiety

Episode 9, 19 April 2017 

It's very common to experience depression or anxiety after a stroke, beyond the expected fear and early sadness. But as challenging as these conditions are, they can be treated, and recovery is common.

In this podcast, we talk about out why people experience depression and anxiety after stroke, what it feels like, and how to get help that works.

Our guests are:

  • Associate Professor Maree Hackett from the George Institute for Global Health, who conducts research on depression in cardiovascular diseases such as stroke.
  • Luke Webb, a young stroke survivor and stage, television and film actor.
  • Simone Russell, occupational therapist from StrokeLine.

 

 

Podcast transcript

Download the transcript

Announcer: The following podcast may contain topics relating to anxiety or depression, which may be distressing to some people. If you need someone to talk to, call StrokeLine on 1800 787 653, or Lifeline Australia on 13 11 14.

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.

You can join the conversation at enableme.org.au.

This series is presented by Australia's national Stroke Foundation and sponsored by Allergan.

Chris: It's very normal to feel strong emotions after a stroke, like being sad or angry or frightened, or even positive emotions such as hope and gratitude and love. The strong reactions usually get easier over time, but it's also common for people to have longer lasting difficulties such as depression and anxiety. These can make life for a stroke survivor extra challenging. But even so, they can be treated and recovery is common.

Today we're going to ask why people experience depression and anxiety after stroke, what it feels like and how to get help that works. We will be speaking to researcher Maree Hackett from the George Institute in Sydney about her research on depression after stroke, and we'll talk to Simone Russell from StrokeLine about getting support.

First though, we're lucky to have a genuine movie star on the line. Luke Webb is a Sydney-based actor who's performed on stage, television and film, including a key role in the Australian feature, Circle of Lies. Things changed for Luke when he had a stroke aged just 20 years old. However, he's since returned to acting as well as lobbying for more government action on stroke, most notably by riding his bicycle to Canberra to deliver a petition.

Luke, thanks for taking the time to join us.

Luke: Thanks Chris, it's great to be here. I don't know about genuine movie star but it's my pleasure.

Chris: Could you please start by telling us your stroke story?

Luke: It was back in 2013, I'd just turned 20, life was great, things were on the up, really happening. I took some time out to do a little bit of travel for about a month or so and I actually developed DVT, which is deep vein thrombosis, in my left leg. And that clot eventually went to my brain and that caused a stroke.

Chris: So, I imagine there were some big physical effects on you ,but how did it affect you emotionally?

Luke: You know, it's funny because whenever I talk to people—and I've done quite a few of these interviews over the past few years—one big thing about stroke is, a lot of people, and I'm not being cynical when I say this, but a lot of people really, I think only, and I myself I did as well, perceive that stroke had just physical disabilities that came with it. I think that not a lot of people realise that there’s a lot of mental factors that follow a stroke and that's not really talked about, a lot of people don't talk about it and I didn't talk about it for quite a while either.

You know, being that young and having mates the same age and always being fit and healthy, I probably couldn't tell you how it made me feel on this G-rated podcast but, more politely, it just made feel worthless and it made me feel like you're a nobody, you become a victim and you just feel the shame. They were the initial feelings I had, originally when it happened, I felt worthless and helpless.

Chris: Was there a point where you realised that you weren't really coping and that you needed to get some help?

Luke: You know what Chris, that came quite down the track. I'd had the stroke and then I started rehab and the whole time my mental state was in a really bad way. It wasn't until one day I really hit a brick wall and I realised that I needed help and things weren't going to be okay if I didn't seek that help.

Chris: What did you do then? What did you do to get that help, to get back on track?

Luke: I'm always a strong believer in, there's nothing wrong with hitting rock bottom because the only way up is from there, and I really believe in the fact that sometimes people do need to hit rock bottom before they can fix themselves again, and I kind of did hit rock bottom. I didn't talk to anyone about how I was feeling and I didn't share that with anybody. On the outside I had this huge smile and everything seemed rosy and everyone was so proud of how well I was doing in rehab but on the inside I was like a lost child. I used to curl up in a ball some mornings in bed and not want to get out of bed.

It's taken a long time for me to be able to talk about this, but eventually it got to the point where I started to have thoughts about taking my own life. Even thinking about acting on those thoughts and it was then that I realised, hey, I'm better than this. I realised, hey you know what? Yes I'm a victim, but I shouldn't be ashamed that I'm a victim, because I did absolutely nothing wrong for this to happen to me. And I think that's a first step for anyone who's a victim of anything, whether they're a victim of a disease or a crime. You need to realise and not be ashamed of being a victim because you did absolutely nothing wrong and pretty much you're just a victim for breathing, really, and that's when I realised, hey, I need help. When I realised, hey you know, I'm better than this, I need some help and I'm going to get through this, but I need to deal with this and I need to deal with this in my own way.

That was when I seeked help and I started to speak with a medical professional. But at the same time I also opened up to my friends and family as well, and that was like a huge weight off my shoulders, because they were all just so supportive, everybody was so supportive and I think that was a big thing as well. I don't know if it goes for everybody but for me anyway, it was are people going to support me, are they going to be ashamed of me? I was really embarrassed a lot as well. There's a stigma that comes with mental health as well. I'm a guy, it's fine, what are they going to think? Once you talk to someone about it, they were just so supportive and it's just such a great help when you've got that support network of friends, family, medical professionals who support you, it makes you feel like you're worth something and it really does make you feel like you can conquer the demon within.

Chris: What would you then, I guess, recommend to someone who's in that similar situation and can't, at that point, see that hope that you eventually were able to identify?

Luke: As blunt as it is, and I only say it because I did it for way too long, stop feeling sorry for yourself. Wake up one morning, realise that, hey, you're still breathing, you're still alive and things are never as bad as they seem. One thing that I really didn't realise, and someone put it to me quite a while after, and it's what I do tell a lot of people, is that no matter how hard you think you've got it off, there is always going to be someone else in the world that has it worse off than you.

So, my advice is to stop feeling sorry for yourself, you can take a horse to water but you can't make it drink so, you can have all the support in the world but nobody can help you unless you want to help yourself. You need to realise, realise that that's not you and understand that, work through it with yourself, with your family and friends and stop feeling sorry for yourself and go get help.

But first and foremost, don't be afraid to talk to someone, to let someone know how you're feeling, that you're not coping, because it's not your fault. As I said before, don't be ashamed to be a victim because there is absolutely nothing that you could have done to prevent this. In some cases there are, but in many cases, when it comes to stroke especially, sometimes it just comes down to the pick of the draw, quite a number of strokes just can't be prevented and they happen and you shouldn't feel ashamed or feel sorry for yourself or think, why me? Or think about what you could have done better in life.

Be happy that you're still alive and talk about it. Talk about it, talk about it, talk about it, that's the best thing I can say, talk to someone about it.

Chris: Well, thank you very much, that's good advice and thank you for being so open and sharing your story with us today.

Luke: No worries mate, thank you.

Chris: I hope we see more of you up on the screen soon.

Luke: I hope so too actually.

Chris: That was stroke survivor and upcoming movie star, Luke Webb.

Announcer: If you need someone to talk to, call StrokeLine on 1800 787 653, or Lifeline Australia on 13 11 14.

Did you know you can customise the enableme website to suit all your viewing needs? You can choose large size fonts or different alignment of text on your screen, a high contrast screen so that different parts stand out, automatically underline the start and end of each sentence, read in easy English, and many more options. Set up once and your personal settings are saved for all your future visits. Just click on the accessibility icon at the top of the screen at enableme.org.au.

Chris: Our next guest is Associate Professor Maree Hackett. Maree is Acting Director of the Neurological and Mental Health Division of the George Institute for Global Health in Sydney. She has a background in health psychology and epidemiology, and her current research is focused on depression in cardiovascular diseases such as stroke.

Thank you very much for joining us Maree.

Maree: It's my pleasure, thanks for inviting me.

Chris: Now, I guess one of the first questions, one thing we've been thinking about, is how common is depression and anxiety after stroke?

Maree: It's common, it's very common and in fact it's almost unusual not to have it at some point. So if you look at all the really good quality research studies that have been conducted on people who have had a stroke, in the first year about half of them will experience depressive symptoms of clinical concern and at any one time, if we just take a group of people who have had a stroke, about one in three have got depressive symptoms that would concern us. That number might drop, that proportion might drop to about one in four, between one and five years after stroke but that's a lot of people experiencing depression.

Chris: Given that stroke is itself such a traumatic event, there is bound to be many different emotions involved, but how do you actually decide it, when it reaches this clinical stage, that you can diagnose depression or anxiety?

Maree: Yeah that's a really good and a very important question. If I asked you, Chris, how you were feeling today, compared to how you were feeling maybe a month ago, your sleep might have changed so you might be a bit tired, your diet might have changed, there’s lots of chocolate and hot cross buns around so maybe you're eating more than normal or maybe you've given up some things because it's the lead up to Easter so you're eating less. So all of these things, changes in diet, changes in sleep, changes in your mood, changes in what you're interested in, they're all symptoms that go together to make up what we call depression.

Now, what's different from what people who have one or more of these symptoms, experiencing those on a daily basis, from someone who has clinical depression, is that, that combination of symptoms impact on your ability to be you. And by impact I mean it's a sort of a functional impact. You don't want to go to work or you're unable to go to work if you were previously in paid work. You don't want to get off the couch and make your meal, you might not want to leave your house, you don't want to see your grandkids who you used to have great fun seeing. You don't want to see your family perhaps.

So, the difference between someone who has lots of symptoms of abnormal mood that don't bother you, you're just aware that you're a bit tired today or you're a bit hungry or you've eaten too much, the really big key factor is that it impacts on your ability to be you, and that's what we call the functional impairment. Without the functional impairment, you don't have depression. Same as you don't have anxiety without that functional impairment.

Chris: I do want to ask you also about the cause, what causes these effects after a stroke. But just to let you know, with our podcast, we put out a call to our listeners for questions and of course for this one we’ve had some big ones and there have been questions about damage to particular parts of the brain from a stroke. One person saying they believe their stroke has affected their ability to feel positive emotions. Is this the kind of thing that can cause depression?

Maree: Look, it's a really appealing idea that where the damage occurs in your brain might put you at greater risk of experiencing depression or anxiety or other changes in your mood, and despite all the studies that have been done, there’s been no consistent evidence to show that we can say, look you've had a lesion—that's what we call the damaged part of your brain—you've had a lesion on the back right hand side and that means you're going to have depression.

The correlation’s just not that clear and that's possibly because, the way we find out where your lesion is and those imaging studies might still be a bit crude, or it might be that there’s multiple aspects that make up your risk of having depression. So it might not just be the damage. It's a big thing having a stroke, it's a life-threatening event that can drastically change your own impression of you and what you used to be able to do. There’s definitely a distinctive, what we call a reactive depression, something untoward has happened and you're reacting to that and in fact it's kind of normal to have that reaction after a big life-changing event like a stroke.

Where it becomes not normal is if that reaction or that low mood persists for a long time. Equally unpleasant regardless of whether there is, what we would call a biological cause for the depression versus a reactive cause, it doesn't change how we manage the depression. So in some ways, it doesn't really matter. We do think that if you've had a very bad stroke, there may be a bigger lesion rather than where the lesion is located, maybe that knocks out part of the mood centre, but again, those data aren’t very strong.

Chris: Okay, that's very valuable information to hear. I guess, given what you are saying about these kind of various causes and impacts, what is the connection, I guess the back and forth between these emotional problems and physical complications, things like fatigue and that sort of thing?

Maree: Well, maybe fatigue after stroke looks different from fatigue before stroke. If I just take a step back, and the way depression presents and the symptoms that go together to make up depression and anxiety, that looks exactly the same before stroke as it does after stroke. Depression is depression. With fatigue there is actually possibly a difference that occurs after stroke. So general fatigue, in what we call the general population, happens when you've overexerted yourself, you've been up too long in a day or your sleep has been interrupted, so you just feel tired. And when you have a rest or a sleep, that resolves your fatigue, you don't feel fatigued anymore.

After stroke, you get this interesting type of fatigue that is persistent and it's not resolved by having a nap or having a good sleep. So, the fatigue looks a bit different and then if you're fatigued you might be less likely to undertake your usual physical activities, and that leads you on to being a little bit more sluggish generally, regardless of whether or not you've had a stroke. Stroke, for a lot of people, causes functional problems, they have movement changes, they have mobility changes, it's not as easy to walk around. So that also impacts on their ability or desire to undertake physical activity, which in turn makes you more sedentary and more likely to be fatigued.

So it's quite a nasty cycle, and there is that use it or lose it mentality, that people who have fatigue will probably be encouraged by their clinician to maintain whatever activities they can and that's where you want to work with someone who knows what to do with someone who's had a stroke. And you can have Thai Chi delivered while you're sitting in a chair, you can do yoga from a chair. You don't have to be running round the house to get that physical activity to help with your fatigue.

Chris: Thinking about what you said there about how depression can affect people who haven't had a stroke as well, I suppose the other side of this is, carers can also suffer from emotional problems if the person they are looking after has had a stroke.

Maree: Yes, that's quite common too, and once again it's an understandable by-product. So not only has the person who has had the stroke’s life's changed, their carer—it might not be someone who delivers high intensity care, they might be their partner or family member who sees them quite often—can also experience depression. Same method of diagnosis, same group of symptoms go together to make up that diagnosis of depression. And then you're in the trouble where the carer also is dealing with their own issues and it can be quite a lot of frustration will develop between the carer and the person who has had a stroke and communication can be tough work. That’s why it's really important that your general practitioner knows if you're feeling down, your general practitioner knows if your partner's feeling down, and that people are quite open about the things they are feeling.

As I mentioned right at the beginning, it's almost odd not to experience some sort of mood problem after a stroke. You need to look for help if you're experiencing these things because you don't want a whole family of people who are at home because they are depressed.

Chris: Okay, well let's talk about the other side of it then. What are the treatments, what are the positive things that can be done?

Maree: Well, there’s a whole series of things that can start from very simple. So, if you've got access to a computer or a smartphone and the internet, you can do some guided self-help type of therapy. There’s online things, one of them is called MoodGYM, where you can login and it takes you through some of the same steps that a therapist would take you through, but this way you can do them yourself in the privacy of your own home at your own pace. So they'll ask you some questions that will help you have a look at your thinking patterns and they might suggest some ways to train you to think a bit differently and that might help with your motivation and your mood and your ability to get around. That's quite good for if you've got mild or low level depressive symptoms, so you might be feeling down but it's not having a massive impact on your day-to-day life.

Once your symptoms start getting to the point where you're really noticing that it's impacting on what you used to do, so you're not going to work or you're not eating properly, or you're not talking to anyone, then you probably want to go the next step up where you go and talk to your GP. And your GP has the ability to do a couple of things. One, they can organise for you to talk to someone about your mood, and for those who need to do that there’s Medicare-funded talking sessions that you can get up to 10 that are subsidised by the government, so hopefully money wouldn't be an issue and you are getting access to those services so long as you've got the services in your area. The talking therapies are really good if you get in early, when the symptoms are mild, because it helps you to change your thinking and your practices before the symptoms develop into something less manageable.

If your symptoms hit you and you're very disabled right from the start, your GP will prescribe you an antidepressant. There’s a lot of different types of antidepressants, some old ones, some new ones, they all do the same thing. Your GP will talk to you about how they interact with any other medications you're on, because that's important to know, and you also want your GP to tell you when to come back so that you can have your mood assessed, to see whether the dose needs to be changed or whether your medication needs to be changed. Because about 50 percent of people don't like their first antidepressant, so they go on to a different one and that might be side effects usually that would make them go back. Then, you also want to know at what point do I start to say, okay, I think my symptoms are gone, can we look at taking me off my antidepressant?

Chris: Looking at your research history, you've covered some of these antidepressant treatments as well, what kind of things do you look at in your research?

Maree: One of the things I do is look at the totality of the research that has been published. So I bring it all together in something called a systematic review. So you don't just get the results from one antidepressant trial, you get the results from 15 antidepressant trials. That's how I can say, we know that antidepressants work if you're depressed, you've got to balance out the benefit and risks, so we know they also cause some side effects, but they do treat depression to remission.

The talking therapies, if you're very depressed there's less evidence. That's why I suggested that if you get in early when your symptoms are mild, you can ameliorate your symptoms and lower the development or hopefully stop the development to full-blown depression.

We also do some other stuff where we’re providing in a current trial antidepressants to people immediately after a stroke, regardless of whether or not they've got depression. Because there is some evidence, in a small trial conducted in France, that showed that antidepressants actually improve your physical function, so you have less restrictions, you might be able to walk better, might be able to move your arm better or your face better after three months of treatment. There's our trial, which we've called AFFINITY, in Australia and there's a trial of the same design being conducted in the UK called FOCUS and another one in Sweden called EFFECTS. And we're combining all our trial results and by the end of all three trials we'll have over 6,000 patients to look at the data to see if that is true, do antidepressants improve physical function? In addition to that, we’re of course looking at the impact on depression and giving antidepressants as a preventative strategy. So far we haven't had any strong evidence for that.

Chris: Okay, well that is very promising, that sort of thing that you're looking at. I mean, I guess it's a reminder how amazing the brain is and how everything is connected.

Maree: The brain is one amazing organ. And the difficulty with the brain is we don't really understand all the connections, so it can be very frustrating if you're sitting in front of a clinician who aren't able to give you a straight answer to those questions like, has my stroke caused my depression?

Chris: Okay, well thank you very much for sharing this information with us, Maree. I'm sure that you are going to get some very interesting results out of your current trials.

Maree: Thank you, I really hope we do too.

Chris: Thanks for joining us.

Maree: Okay thank you.

Chris: Associate Professor, Maree Hackett from the George Institute.

Announcer: Setting goals is crucial to stroke recovery. Goals can be as simple as walking to the letterbox to check the mail, or bigger goals like getting back to work. enableme has a unique tool, where you and your carer or family can plan what you want to achieve, track how you are progressing and celebrate your successes. You can also connect with other people who set goals similar to yours and challenge or inspire each other. You can even set up a blog to write down how you are feeling and share your own story. And don't forget, our professionals from StrokeLine can help with personalised and confidential advice to help you grow stronger after stroke.

Visit enableme.org.au.

Chris: Finally today, we have our most regular guest, occupational therapist Simone Russell from the Stroke Foundation’s StrokeLine. Thanks for coming in again, Simone.

Simone: Thank you for having me, Chris.

Chris: How many of these podcasts have you done now?

Simone: I think I've lost count, I think I'm on a few.

Chris: Okay. Usually here, I ask you about your perspective as a therapist. So, we're talking about depression and anxiety, how often does that affect people's recovery after stroke?

Simone: Yeah look, I think it's something that comes up on a daily basis on StrokeLine and certainly on our website enableme. It’s prevalent for stroke survivors to experience depression and anxiety, or at least symptoms of it at some stage, both together or separately as well.

Chris: And does it affect their ability to participate in other parts of their recovery and rehabilitation?

Simone: Yeah, absolutely, I think as Maree's touched on, a stroke is a major life event or a major traumatic event and so it naturally does affect somebody's ability to adjust to life after stroke. And depending too on their level of physical disability, any cognitive changes, any communication difficulties, you've also got things like pain and fatigue that can also impact on someone's recovery and also exacerbate or alter someone's mood. So, it really can affect relationships, it can affect how someone might participate in rehabilitation, someone that's experiencing depression or anxiety may withdraw from rehabilitation or withdraw from some of their relationships.

There's that fear of a second stroke, or of another stroke, which we've talked about on a previous podcast, and that's something else that can also consume people when they're on that road to recovery that can certainly limit or impact on their ability to participate in rehabilitation. There is so much going on, they might be fearful of the future, it might be raising questions like, what's the meaning of life? Why has this happened to me? There can come a real loss or lack of control after stroke, which can definitely impact on people in terms of their mood and how they respond to life after stroke. So, it can affect really every area. It can affect their sleep, it can affect their appetite so whether they're hungry or not, you get both extremes, perhaps overeating or under eating, that also then affects your energy levels and ability to participate in rehabilitation.

So really, mood and depression and anxiety can affect every aspect of someone’s recovery.

Chris: As you said, it can affect the way people interact with the rest of the world, which I guess makes it extra hard because they need to talk to someone to get some help in this context. So how do people start that conversation, how do they speak to a health professional about getting some help?

Simone: I think it's a really big challenge for many people, not all. I see particularly men struggle to open up and talk about their mood and their feelings, that can be a particular challenge. I get a lot of callers from the female carers or partners, friends, family often on behalf of the male stroke survivor, so that is something that I think needs to change. I would say, look find someone that you trust in the team if you are actively seeing a rehabilitation team, perhaps go to that person that you trust the most in the team, we all have different relationships with different therapists and different family members and friends, so find someone that you trust to start with, that you feel comfortable opening up to. It may be the doctor, it may be the occupational therapist, it may be the physio, or the speech pathologist, just find somebody. It could be the nurse on the ward, or it may actually be a family member or friend where you start and then give them consent to actually raise it with the team as well.

If you're already in the community, you've finished your rehabilitation in the hospital, obviously the GP is another good starting point, which Maree also touched on and I think Luke as well. So really just, I think coming up with somebody that you can start to share that information, but someone that you know is going to have access to the right information and support and be able to direct you to the next stage of getting help. But starting a conversation is really important.

Chris: Which I guess… Conversation, that could make it extra difficult for people who might have aphasia after their stroke. They've got extra barriers then to getting support so, what do you say about that, about someone who has aphasia and can't communicate so effectively?

Simone: It's definitely, again, it’s very prevalent for people with aphasia or communication difficulties to experience depression after stroke. The risk or rates are higher for this particular group of people that do have communication difficulties. I think it's having that close working relationship with the speech pathologist and making sure that that stroke survivor has a clear communication style that they are able to have opportunities to express how they are feeling, and certainly the speech pathologist and the rest of the rehabilitation team would be keeping an eye out in particular for this group. But I think, making sure that the family and friends are able to communicate with them as well, so that they can actually indicate if there's an issue with their feelings through another means of communication, and that might be using a communication book, or pointing to a picture of feeling sad, that kind of thing, depending on the level of aphasia

Chris: What are your top tips then for stroke survivors, or for carers, who are coping with depression or anxiety?

Simone: So I think acknowledging, accepting and education is probably my first tip. So, really acknowledging that there is a challenge there with mood, whether that's anxiety or depression. And anxiety can show up as fear or worries, excessive worrying. I think the first thing is to really ask for help when you do acknowledge and accept that there is an issue, as I think today has been evident, the conversation, it's much more likely that you will have a better outcome if you seek help earlier on. And so while it might feel a bit scary to get help and to accept that this is a problem for you, but to not let stigma or anything like that stop you and to ask for that help.

There are many strategies, Maree certainly touched on some, but there's talking therapies, there's different techniques that you can use within talking therapies, like cognitive behavioural therapy and acceptance and commitment therapy, and mindfulness. But accepting it as well, that you have been though a major life event, so it is also part of the human experience when we go through these traumatic events that there will be an adjustment period and I think Maree termed it, the reactive sort of depression or reactive mood. I think that's really nice to understand that there might be a period where your mood is affected and if you get in early and have the strategies—and it could be self-help strategies like particular books or apps that can also help you get through if it is a mild presentation.

But you know, loss of independence, the financial pressures, you might not be able to work or drive, so there's so many different variables that can come into play when our mood is affected after stroke. So really just acknowledging that and accepting it and really starting from there.

So my second tip is seeking support, which we've touched on, talking about it, starting a conversation. There are many different ways you can access support, so it might be through the GP and getting a formal psychology referral, as Maree touched on, there is Medicare-subsidised sessions available to make it more accessible. Some rehabilitation teams have a psychologist on their team, which can be fantastic, or a social worker that may be able to provide some counselling and some support.

There's also, obviously, medication is another option to talk to your GP or to get a referral to a psychiatrist, if medication needs to be looked at. The other things, are things like online support, so enableme is a perfect example where many people come for that peer support. We have peer support groups out across Australia for stroke survivors, so attending a stroke support group, and carers are usually welcome at those groups as well. The other options, things like StrokeLine, we’re available from nine to five, if you wanted to have a talk about a more personalised sort of plan, or next steps about how to deal with your mood and where to go. We also have Lifeline and Beyond Blue are fantastic resources in the community, particularly Lifeline, that's a 24-hour service. So they're also other options to think about depending on the severity of your symptoms.

The other thing to note too is I guess with carers, Maree touched on, depression and anxiety after stroke, it's not just something that affects the stroke survivor, it can affect the carers. So I guess, having open communication between the carer and the stroke survivor. The carer may also want to access a mental health care plan through the GP and seek psychological support, because that's going to help give them the skills and strategies to understand perhaps why their partner, why the stroke survivor is behaving or perhaps responding or acting in certain ways, and giving them the tools and strategies to manage as well. There is Carer Gateway and Carers Australia as well for carers, which can be really supportive.

The support groups though, I think a lot of carers go along with their partners to that and that can be really helpful. Looking at it from a holistic approach as well, looking at sleep, looking at pain management, looking at fatigue all of those other things that can come into it, diet for example as well and exercise, are so, so important in stimulating the happy hormones, so it needs to be a holistic, rounded approach.

The last tip I would have, I think I say this nearly every time, is really to have kindness and compassion for yourself. If you have had a stroke or if you are feeling a little flat or a little low in your recovery, to have kindness and compassion that you are doing the best you can and if you follow some of the suggestions on the podcast that hopefully you start to see a little bit more of a trend up in your emotions and mood. But to take one day at a time and to seek that support.

Chris: Brilliant. Well, thank you very much Simone.

Now, you can of course ask your own questions of Simone and the other health professionals on StrokeLine, by calling 1800 787 653 or 1800 STROKE. And also if you have concerns after this discussion, that have been raised you can call StrokeLine in business hours, you can also contact Beyond Blue on 1300 22 4636 or beyondblue.org.au, or for urgent 24-hour support you can call Lifeline on 13 11 14.

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, that will help other people to find our podcast and give us a good feeling too, I think, which is what we are all about here.

Thank you again to our guests, Luke Webb, Maree Hackett and Simone Russell.

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 our website, enableme.org.au.

It's free to sign up and you can talk with thousands of other stroke survivors, carers and supporters. We also have 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 health professional. If you would like to suggest a topic or provide feedback contact us via the website enableme.org.au.

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 www.studiofour99.org.au.

This enableme podcast series is produced by the national Stroke Foundation in Australia with the support of Allergan.

Announcer: At Allergan, we know every stroke is different and so is every recovery. After stroke, many people have muscle weakness and loss of movement but you might also be experiencing tight muscles, or stiffness in your arms, fingers or legs. It's called spasticity. You might have muscles spasms or uncontrollable jerky movements in your arms or legs, changes in your posture, or unusual limb positions, and it can cause pain. It can be treated though. Physiotherapy or occupational therapy can help you adapt and improve your movement. There are other possibilities too, such as injections with botulinum toxin type A, electrical stimulation of the muscles, electromyograph or EMG biofeedback, and muscle-relaxing medication. What is important is to start your rehabilitation as soon as possible after a stroke and to discuss your goals and progress with your rehabilitation team at every stage.

Allergan is proud to bring you this enableme podcast.