Stroke in your 20s and 30s

Episode 14, 6 November 2017

Read the transcript below

Stroke doesn't discriminate, and we're hearing more and more about young people having strokes. When you're younger you can experience the same physical effects, but the impact on your life can be very different. The nice, smooth path that you've mapped out can drastically change course.

In this episode, we talk about what it's like to have a stroke in your 20s and 30s, and to have to set a new path towards goals like a career and relationships. And to deal with invisible stroke impacts while trying not to become invisible yourself.

Our guests are Ali Earley, a young stroke survivor, former nurse and now Stroke Foundation volunteer; Assoc. Prof. Maree Hackett from the George Institute, who has researched the psychological and social factors affecting young stroke survivors; and Lisa Mangwiro from StrokeLine.

Podcast transcript

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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.

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

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

Chris: Stroke doesn't discriminate, and we're hearing more and more about young people having strokes. When you're younger you can experience the same physical effects, but the impact on your life can be very different. The nice, smooth path that you've mapped out can drastically change course.

In this episode, we're going to talk about what it's like to have a stroke in your 20s and 30s, and to have to set a new path towards goals like a career and relationships. And to deal with invisible stroke impacts while trying not to become invisible yourself.

Now to help me with this conversation, I have in the studio Lisa Mangwiro from the Stroke Foundation’s StrokeLine. Thanks for coming in as always, Lisa.

Lisa: Hi Chris, thanks for having me.

Chris: Now, I imagine that you've ... You've spoken to a lot of young stroke survivors on the phone about the particular issues that they face?

Lisa: We certainly have Chris, and I actually think this topic is a very interesting one in that in previous podcasts we've often spoken about specific topics and sort of narrowed it down to those, and today of course we're really looking more broadly at how stroke impacts a younger person. And what we find on StrokeLine is that there is such a huge difference from person to person.

Chris: Okay, well look, to talk about those kind of broader issues, and later on we'll be speaking to psychologist Associate Professor Maree Hackett. She has done some research on the challenges that face young stroke survivors, including that of returning to work, which is a big one.

But first, on the line we have Ali Earley. Ali is originally from Vancouver, Canada, and she was a registered nurse when she had a stroke at the age of 30. Now she currently volunteers with the Stroke Foundation in our Brisbane office, and she does many other activities that I'm eager for her to tell us all about.

Ali, welcome to the podcast.

Ali: Thanks, Chris.

Chris: Now, I did touch on your stroke story there in the introduction, but yeah, can you just please tell us a bit more about when you had your stroke and what happened?

Ali: Sure. So, in April of 2013, it was the 13th to be exact, at the age of 30 I was actually just starting a night shift. I worked in an emergency department and I went in to a utility room. And, when I was standing in there I felt this strange sort of pop sensation, and the most intense feeling of nausea. Really hard to sort of describe, 'cause I've never felt anything similar or since in my life. And that's sort of all I remember. I was found unconscious by co-workers sometime later. I was told that I had a seizure, they witnessed it, and that I was also very combative, and confused, and in and out of consciousness while they were trying to diagnose and figure out what had actually happened.

So, I was ... Unfortunately I had a ruptured cerebral aneurysm to the right posterior ascending communicating artery. And resulted in a subarachnoid haemorrhage. So, the hospital that I worked at doesn't have a neurosurg. department so I was transferred to a sister hospital where I had endovascular coiling performed. Very thankful for that procedure. I know it's a bit of a newer method that's used, but also being non-invasive, the recovery time is a bit shorter, so I was very lucky with that.

I spent about three weeks in the hospital and I would say my recovery in the hospital was quite unremarkable. It was quite progressive in that process. I did have a lot of symptoms. Pain control was a huge problem for me. Also, along with that is I had lost all my stamina. So, I was previously a very healthy individual. I had no stamina to stand up or move around as I pleased, and I had a lot of problems with cognitive factors, such as memory, concentration, being able to hold a conversation. And the world just felt so much more intense. Lights were a problem, noises, just sounds in general were completely overwhelming. My brain had somehow lost the ability to sort of filter out all of those environmental stimulus that I was facing.

I was discharged after three weeks and went home to my partner, and I spent the next several years recovering, to sort of where I am today.

Chris: Great. You still have some lasting effects though, I believe, including the sound. Is that still an issue for you?

Ali: Yes, it is. So I do have some lasting impairments. So, physically I'm quite thankful for where I am physically. I don't have any visible impairments. Some people say I get quite glassy, so if you have a conversation with me, maybe about 30 minutes or so, my eyes start to sort of glaze and I lose focus. But other than that, physically I'm good. Most of my, sort of, I would say residual effects, are invisible. So I struggle a lot with chronic migraines, fatigue. I still have hearing issues, which was a tricky one because we weren't aware of what it was for quite a while after. So that was quite a challenging one to identify and diagnose.

There are some mood instabilities, and – I still face this today – is some anxiety and irritability. Hormonal imbalances, 'cause of how that's damaged sort of my endocrine system. And then cognitive challenges as well.

Chris: And have you had to, like, make adjustments in your daily life then, to these sort of things, to cope with some of these impairments?

Ali: Yeah, absolutely. The way I sort of look at my life now is, my old life is over and this is my new life. Some days it's for the better and I'm super thankful that I'm here and I can move my limbs, and I'm able to still contribute to society. And then there's other days where I'm mad at the world and "Why did this happen?" And you know, I think very reasonable feelings to have. But I've found many ways to sort of cope with some impairments that I would have, or maybe the imperfections, would be the right word to use.

So, I've had to change a lot of hobbies. I used to run trails. Being from Vancouver, we have lots of big, beautiful mountains, so I liked to go run in the woods. I have problems with proprioception, so that sort of, brain-foot connection is not so good anymore, so there's some problems with stability and balance, and stuff. Also, I loved concerts and live music. And that's just ... It's just not on the table anymore.

But that being said is, I can't bubblewrap myself and I definitely can't control the world so I've found ways to compensate for that. And some of the things that I've found that work really well are, I had custom made earplugs, so I wear those out in the community, especially when I know I am going to a loud place. And maybe you wouldn't necessarily realise it, but the cafeteria and the food court, or like a food court in a mall, is one of the noisiest, overwhelming environments to be in.

I've also found other ways to manage, such as I like to plan my day so that I can manage my energy levels. When I see friends I sort of set timelines. Like, I'll have lunch for an hour or coffee for an hour. I take very strong medications for migraines. They do have some side effects but for me, it's worth the trade-off. I wear sunglasses and such to sort of dampen the sensitivity to light and stuff. So maybe I'm a little bit of a strange person out there with my sunglasses and my earplugs, but I think we all are in our own right, right?

Chris: Yeah, look and you know, wearing the sunglasses is you know, at least you can just pretend you're trying to look cool, I suppose.

Ali: Exactly. And my earplugs, they're actually clear so you almost can't see them unless you look really closely.

Chris: Okay, now we talked about how returning to work is kind of a big challenge, and certainly part of getting your life back to normal. How did having the stroke affect your employment?

Ali: Yeah, so since I was young – this is a bit of a precursor – but since I was young I always knew I wanted to do something to help people or animals. And nursing sort of seemed the path for me, so it's not only my career but it's also my passion. And then that also became a goal after my injury, was to return to work in some capacity. I knew earlier, after my injury, that I wouldn't be able to return to emergency. That just wasn't possible, and I was okay with that, but I thought I would be able to return to some type of nursing.

I'm very lucky to be part of a union and there's a collective agreement. And there was an accommodation process that ensued in the winter of 2015, so about two and a half years after my injury. My recovery was quite slow and not very linear, so I did have some ups and downs along the way, which is why it took so long, I think, to get there.

So, I had a gradual return to work that was ... It was a bit of a battle to develop one that seemed reasonable for everybody that was involved. My doctor and I were fighting for a six month return to work, and the employer was looking more at six weeks. So, we weren't really meeting eye to eye, but we figured "Let's just start it and see what happens". Unfortunately, it didn't work out.

So, that was ... I have ... And you know, there's a multitude of factors. I don't blame the employer 100 percent. They definitely had their part to play, but also, I knew that medically there was some stuff going on for me that didn't make it as easy as I thought. Or not as easy, but as smooth as maybe it, as it could've been.

I did know that fatigue and migraines were gonna peak initially when I started back to work, but I thought, maybe if I had enough time working at a certain number of hours I'd be able to plateau and sort of adjust to that, and then start building again. But I didn't really get enough time to do that.  So, that being said, this is what did the most damage to me. Not being able to go back to work was devastating. That was a huge part in sort of, my ability to say "Look, I have this injury and I'm gonna get back to my life. I'm gonna find something that's gonna make me feel like I succeeded from this. That I pushed on." And so, when that didn't happen, I just sort of fell to rubble, and I had to learn ...

I guess that's when I really realised that the impact of this is constant, and it's always changing. That acceptance peace, not accepting failure, but accepting that life is different now. Does that make sense?

Chris: Yeah, absolutely. Look it's ... Certainly that sounds like, yeah, a great way of coming to terms with that big impact there. What about things though, like I don’t know, your support networks around you and personal relationships, and that sort of things. I mean, you were in a relationship at the time but I also imagine your family was overseas.

Ali: So, my injury did happen in Canada, so my family was there for that. I was in a relationship when my injury happened. And I remember one of the nurses on the unit said to me "This'll make or break". And I remember looking at the stats, strangely, when I was in there one day. I don't know what I was thinking, but it was like 90 percent of relationships fail after an injury this life-changing, and mine was one of them.

It wasn't anyone's fault, it's just that's what happened. I needed to move forward with my life in a positive manner and I needed someone that was gonna be accepting and understanding of that. And I don't think that that was the person. So yeah, that didn't work out.

Also, that being said, my family was absolutely amazing. They did everything. They never cried, they never showed weakness, they did what they needed to do to get me through the day and to get me through the month, or whatever I needed they were there. They were my absolute advocate.

And then once I got to a point where I was self-sufficient enough and I was capable again, I became my own advocate. So, definitely family and finding your own voice to speak up for yourself, those are key.

Chris: And did you find that your experience in the health system, that gave you an advantage in terms of, I suppose, speaking up for yourself and advocating for yourself?

Ali: Oh definitely. Yeah, I have a very incredible doctor who I should also acknowledge. She's fantastic and she was very supportive all the way along. I would show up in her office with like, "Well, look at this research study about how brain damage can affect your endocrine system." And I'm like, "Maybe we should start looking at that. Maybe is that something we should be testing?" So, she was very supportive of the fact that I had all this nursing and medical experience that I was always pulling from, and always trying to find something from that knowledge background to apply to my case.

And also with the basic things like, one of the principles that I sort of adopted is "Pain is not gain". So with exercising and such, is that you know, you're always kinda told if you want to build big muscles you gotta go work out, and it's gonna hurt, and da, da, da, da. And I think with stroke patients that that's not the case and you just wanna work to a point where you feel comfortable and your body feels good, and that's it. And I think that's something also from nursing and that medical perspective that sort of facilitated that development of these ideas that I have.

Chris: This is something I just wanted to ask Lisa about, because I know that not everyone has these kind of advantages of that medical knowledge and those connections. So Lisa, what can people do if they're ... I guess they need some extra support and they don't have it in that way?

Lisa: Yeah, definitely. Self-advocacy is definitely… can be a huge, huge challenge. And like Ali mentioned, having your close circle of people that you do trust and that you can go to for support to help you navigate through those challenges. That's a really sort of helpful thing.

It's also important to have your team of health professionals around you to help support you through your recovery as well. So that'd be the key, key things.

Chris: What about seeking out other stroke survivors, or other kind of support networks like that as well?

Lisa: Yeah, definitely. And many ... You know, on StrokeLine we often have conversations with young stroke survivors who report that they don't really feel like many others understand their situation, or sort of share their experiences. And often having a group of people to talk to, to help normalise those experiences can really be helpful. So, as you mentioned, this can be connecting with stroke support groups. And there're some around that specifically cater for people that are younger, and they're often, yeah, a good sort of point of contact as well, forming those networks around there.

Chris: So it's interesting what you said there about, I guess, finding other people who can normalise what you're feeling, and understand that's normal. So this is similar to what, Ali, you were saying about acceptance and accepting the impact of the stroke, which sounds like it's been a big benefit for you. How has that helped you to, I guess, redefine your life and find new things to do that you couldn't do before?

Ali: Yeah, it's definitely ... Actually, you know what? Sorry, can you repeat that question one more time?

Chris: Yeah, the question is basically. how has your acceptance helped you. I guess. to find a new path in life, and to find new things to do when you can't do the things that you could do before?

Ali: Sure. So yeah, acceptance has definitely been a big piece in my life. And it's not ... I think it's really important to highlight that I'm not accepting defeat, I'm just accepting that my life has changed. And, I think that that's ... I can't speak for other stroke survivors, and everybody's experience is different, like it's been well highlighted. But for me, accepting the fact that this injury happened, it had to happen. I just like, couldn't imagine going through life playing a victim. I just, I wasn't going to be that person, so acceptance was, yeah, it was very important.  And then moving on from that, okay now what? So, I've accepted that this injury has happened, now who am I as a person moving forward? Am I a person that had a stroke, or am I a person that had an injury that happened, and what am I gonna take from that? And I think maybe that's where one of the things with working with the Stroke Foundation was so important, is trying to find a voice for myself, but also for other people.

And, I remember not long after my injury, actually I went to a conference and it was fellow stroke survivors. It was devastating to see. I just, I was like "I don't think this is okay, and this is not the way we should be moving". It was very much a ... it was a rant, which you need to do sometimes. You need to complain and you need to get it out there, and I definitely have those days too.

And, I think that that's where the Stroke Foundation Australia is amazing. Going to the Young Stroke Survivor conference, everybody was positive, and they had good things to say, and they were fine being the light in this injury. And I think that that's what I found, is like, find the light, find the things that make you happy.

Who are you without work? If you went up to somebody and said, "Who are you", not "What do you do for work", but "Who are you as a person"? That's all something we could probably ask ourselves, and maybe not be able to answer, but should think about trying to answer.

Chris: And have you found new, I guess, new paths in terms of work and… or new interests that you're now concentrating on?

Ali: Yeah, so I love exercising, and I love health and fitness stuff. Obviously because I know the value in taking care of myself, especially now, but also because that it's so good for my mind and my mood. So I swim a lot. Brisbane is so blessed with good weather and all the outdoor pools, so I've been swimming a lot outside. I also have a dog who's been my rehab assistant from the beginning, so I spend a lot of time outside in nature walking with him.

I've also become quite artistic. Before, I would draw a stick figure and people would be like "What is that?" And now I've taken up pottery and I'm getting quite good at it, so if you guys need a mug, I'll make you one. I'm really finding some things that I think are helping with mindfulness as well, and pottery is definitely one of them.

Chris: Great. Have you got any other takeaway tips that you can give for other stroke survivors out there? Any last sort of message you want to give out?

Ali: Sure. So, I have a few, if that's okay?

Chris: Sure.

Ali: The first one is, it's okay to accept help. Don't go this alone. It's far too challenging and you'll become isolated, and it just won't be a good result. So make sure you ask for help, 'cause everybody needs help at some point in their life.

Another big point that I've found important is don't accept your label. Medically I'm termed disabled, but in my eyes I don't look in the mirror and think "You're a disabled person". Whatever that means to somebody, I don't know. But to me, I'm not a disabled person. I'm just somebody that has imperfections just like everybody else. So don't let that define who you are as a person.

And seek counselling. Everybody needs to go to the gym, and work out, and be healthy, but we have to work on our minds as well. S, it's a life changing event and you have to make peace with it somehow, and the sooner you start going to counselling and start talking about it, I think the sooner the healing process is gonna happen.

And make sure you drink lots of water.

Chris: Well, fantastic. Well, thank you very much Ali, for sharing your advice and your story.

Ali: Thank you, Chris.

Chris: That was young stroke survivor Ali Earley.

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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. And she has a background in health psychology and epidemiology, and she recently led a research study called POISE ¬– that's P.O.I.S.E. – which stands for Psychosocial Outcomes in StrokE, and it particularly looked at young stroke survivors returning to work. So, I think she's the right person to talk to for this topic. Thanks for speaking to us, Maree.

Maree: My pleasure, thanks for having me.

Chris: Now we've just spoken to Ali, who told us about going through… I guess getting to a stage of acceptance after going through sort of a grieving process and then coming to terms with it. Do you think that this sounds like a typical process that stroke survivors have to go through to come to terms with the changes in their life?

Maree: Yes, I'd say that sounds a lot like what the people we have spoken to tell us happens. And it's really nice to hear that she's reached the acceptance stage actually, because that doesn't always happen for everyone. And that's not necessarily a bad thing. By that I mean you might see acceptance as saying "Okay, I'm not going to progress any further, so I'm going to stop my rehab", for example. And some people say "Actually you know, I'm not going to accept this, I'm really going to push forward".

But that whole process from the beginning, the reaction to what's happened, this is a very serious life threatening event, and then all the physical and psychological changes, and family changes, and financial changes. Change is everything, so that's a really long and interesting journey, and it's different for everyone.

Chris: We've spoken to you previously about some of the psychological effects. You were a guest on our previous podcast on depression and anxiety. Could you expand on some of these other issues that stroke survivors might face?

Maree: Sure. So, I think one of the key things people speak about is ... Let's start with the negatives and I'll move on to the positives. I think that's important.

A lot of people speak about the loss that they experience after a stroke. Now, there's loss in function, which everybody can see and in some ways that's easy to understand. The fact that it's very visible so people can see if you're struggling to get dressed in the morning, or you have difficulty walking.

But there's lots of other emotional reactions where you can have a loss of your ability to control your emotions, so you might find that you are laughing more at times when it's inappropriate to laugh, but more commonly people can get quite tearful in situations where they wouldn't have normally cried before. And that can be very disabling, so you sort of lose your perception of you, in a way.

People can lose their cognitive abilities, so they might have difficulty understanding, or they might understand what you say and have difficulty communicating back to you. And that results in great frustration for people. Frustration is a really common theme that comes through with everybody with stroke.

There might be fear. People worrying about having another stroke. Worrying about their future, you know what's going to happen with their job, what's going to happen with their family. And that comes back to loss. They might lose their licence for a short time or for a long time. And so people can go through a whole grieving process about all these things that they hopefully, eventually reach acceptance of to some degree, but not so much so that they don't keep trying to improve.

Chris: Lisa, I want to ask you, what do you ... What about things like relationships that people might have and the changes in their role in a relationship due to their stroke?

Lisa: So, managing role changes and the effect that has on relationships is something else that comes up quite a lot of on StrokeLine. And being open with family about how you're feeling, and encouraging them to do the same, can often be very helpful. And we also obviously know that the stroke doesn't only affect the survivor but those around them. So, just that concept of being really open and honest with those around you and seeking support if needed.

Chris: Okay. Now Maree, I mentioned your research study, POISE, can you tell us a bit more about what that actually looked at and what it found?

Maree: Sure. Well, we included people up to the age of 65. Adults, so they had to be at least 18. And they were just recruited from New South Wales, but we… in 21 months, we recruited 441 people with a stroke. So, it's not an infrequent event in younger people. In fact, they think it's about a quarter of people under the age of 65 having strokes now, and that proportion’s risen.

And what we did, is we assessed people within a month of their stroke to talk to them about their early experiences, and they also told us then about what they were like before they had their stroke. So they retrospectively told us whether they were working, whether they were able to take care of their everyday activities, for example. And then we spoke to them again at six months and twelve months after stroke.

We were particularly interested in looking at who returns to paid work. So we were looking at positive things, but we were particularly interested in whether or not depression had an impact in return to paid work. We're currently writing papers about return to unpaid work, which is equally important and also quite interesting. But one of the main things we found is that if you are functionally independent, so physically can get yourself around and you don't need help from another person, then you're much more likely to return to work.

We also looked at driving and who was likely to return to driving. Do you want me to talk about that now?

Chris: Yeah, that's interesting, because I think you found some unexpected things there, didn't you?

Maree: Well, I'm not sure they're completely unexpected, but it's quite good to document them. What we found is that quite a few people returned to driving, that was the good thing, a positive thing, they wanted to return to driving.

But I should explain that if you've had an event like a stroke, then the guidelines – and these are the traffic authority guidelines – suggest that you shouldn't drive within a month of your stroke. And that's because they don't want you to be unsafe on the road. You might not have been assessed appropriately for your, say, vision, your reaction times. And if you had an accident – even though it's hard to get an insurance company to confirm this explicitly – if you drive within that one month period and they find out you've had a stroke, they might not pay out even if you've got insurance. So it's really important, for multiple reasons, that people don't get behind the wheel.

But we did find that men and physically active women – women who didn't have any problems before they had a stroke – who were independent so they probably had quite mild strokes, were more likely to get behind the wheel, especially if they had returned to paid work. So that's a bit of a concern for us.

When we talked to that particular group about were they not told, or did they remember being told about not driving, because most healthcare clinicians will tell us that "Yes, we tell everybody they shouldn't drive for the first month", most of them said they didn't recall being told.

Now, we can't verify that they were told, so they might not have been told, but there's an issue there with people getting behind the wheel, because that's self-assessed that they're okay, and they might be being overconfident. We didn't go on to whether or not they actually had any accidents in that time, that wasn't part of our study.

But, clinicians don't like having conversations with people about not driving, and possibly losing their licence altogether. They can be quite wary about assessing people’s fitness to drive. Again, so if they have got an obvious, clear problem, say a physical disability that makes it unable for them to use the brake or the accelerator, or change gears if they're in a manual car, and so there might be a really obvious functional problem. And how do they assess that that's resolved and that they now ... people are now fit to drive?

It's a very difficult scenario for everyone and that's one of the things that when people talk about loss and grief, it also ... The inability to drive, it impacts on your independence, it impacts on your ability to return to paid work. It's something that we sort of take for granted and see as a right, the licence to drive, but it's not really true.

Chris: In terms of that I guess, it is part of that getting back to normal and returning to paid work, it goes with that as you said. Do people, when they do return, do they tend to go back to the ... do you find they go back to the same role, or are there adjustments that need to be made in the workplace for them, to maybe a different role?

Maree: Like it varies, like about three quarters of our sample had got back to paid work within that first year. I think it was around 30 percent who were ... of those who went back ... they had been in full-time paid employment, and they'd got down to part-time paid employment. So there's an adjustment there that would have had to have been agreed between the employer and what the person was capable of doing.

We did ask people whether employers made any changes to help them return to work, and some did make changes to the workplace, and although we didn't delve too much deeper, we assume it would be things like making sure that they have an accessible space to work, or they have the right devices and tools to conduct their job. But the most common sort of change in the workplace was that they changed the schedule or the hours. They provided some training or some assistance in some way for that person to return to work. So they were really positive things, but you know, we could do it a lot better.

Most people returned to the job they were in, or a similar job to the one they were in before their strokes. That was nice to see, that they weren't all having to go off and get new jobs.

Chris: I imagine though there are some unique challenges when you are applying for new jobs after a stroke. Lisa, what do you ... what can you tell us about this, some of these obstacles about applying for a job? And particularly I suppose, the dilemma of how much to tell a new employer of about your stroke.

Lisa: That's a tricky one. Look, I think the decision about returning to work, whether that's paid or unpaid, and even how much to disclose to a prospective employer, ends up being a very individual decision and one that's personal. It'll depend from person to person, and quite a lot of factors come in to play there. So, you know, it really depends on you, how the stroke has impacted you, and obviously the nature of the role.

So, what we often say and suggest on StrokeLine is the most important thing really when having a think about these things is to have a really good understanding about what your rights and what your responsibilities are as an employee. And that's really the key sort of starting point there. And you know, like Ali mentioned, if you're a union member for example, that might be where you turn to. There are services like the Fair Work Ombudsman. That might be another option you want to sort of look into when trying to sort of ascertain, and make decisions about returning to work.

Chris: Okay.

Lisa: It's not a sort of one-size-fits-all approach, and really depends on quite a lot of factors there.

Chris: And I imagine depends on the level of cooperation of the employer as well.

Lisa: Of course, yep. And also looking into whether you involve your health professionals. So that might be an occupational therapist, your doctors as well, to sort of help you make that decision, and looking at whether their input as well would help you.

Chris: That's interesting. So Maree, what have you found in terms of the things that help people return to work. You know, whether it's action ... those adjustments you mentioned by the employers, or is it help from health professionals that perhaps will help people get back to paid work?

Maree: Well, we weren't able to specifically look at what health professionals did to help people return to work. But one of the odd things that we found, or slightly surprising things we found, was that people with health insurance were more likely to return to paid work.

And that kind of went against what we had expected at the beginning, because we thought, "Oh, they wouldn't have the financial constraint maybe", you know because they had some compensation to be able to not return to paid work. But we think it might have… the ability to have, and maintain health insurance, as a marker of usually a reasonably good income. And so, we think actually these people already had highly paid incomes and they wanted to return to work, and maybe they were able to purchase more rehabilitation for example, which then helped them get back to work.

There wasn't too much modifiable, which is what we look for that's really important. Like, the fact that men were more likely to return to paid work. We can't change your sex, or if we can it's not going to be in a way that's going to help you return to work.

So, the really key thing that's modifiable is being free of another person. You know, being able to attend to your daily activities. So that's where that rehabilitation, and if you've got rehab sessions scheduled, going to them and making sure you do the exercises at home, and making sure you're able to use all the devices that you have to assist you, is really key 'cause that was by far and away the main thing that got people back to work. Being physically able to get around.

Chris: Right. And in terms of things like the psychological impacts we were talking about earlier, those sort of things about coping with adjustment to life after stroke, who would you recommend that people talk to about those sort of issues?

Maree: That's a really good question. I think people’s natural tendencies are to want to talk to their friends and their family. And that's important, and you need to have those discussions. But there's something that you get out of talking to a qualified health professional, whether it's a counsellor, a psychologist, psychiatrist, that you don't get from talking to family members. One, they've got and I think the key one, is that they don't actually have a vested interest in your outcome. So they're not needing money from you working, for example. They are not already worried themselves about how you're coping or about how they are coping. They're just there to support you and to talk you through some strategies that might help you get on the right track.

So it's good to make sure you have good, open communication with your family and your friends, where it's appropriate to. But talking to an external person is probably going to give you something you won't get anywhere else.

And there's things like the Better Access scheme where people can have up to ten sessions subsidised, with psychologists, if they go to their GP and say they'd like to someone. So that's really important to know that you can go and talk to someone and you're not having to fork out an awful lot of money to do that. There might be some issues with a waiting list to get in to see that person, but once you're there, you can have the conversations you need to have.

Chris: Right. And Lisa, can people call StrokeLine to find out if, I guess, help accessing some of these services…

Lisa: You most certainly can.

Chris: …and find out what's available? Yeah?

Lisa: Most definitely, and some of the services might be state-specific and that sort of thing, so if people wanted to have a discussion about their specific situation, you're more than welcome to call us on StrokeLine, definitely.

Chris: Awesome. And counselling also was one of Ali's takeaway tips earlier that she gave us for other stroke survivors. How about you, Maree? Do you have any other advice and tips that you would give young stroke survivors, in particular?

Maree: Not necessarily advice, but just some ... talking about some of the things that we have had people say to us. It's not all negative. And one of the really odd things about the end of the POISE project. These interviews took upwards of an hour for most people. We asked about every aspect of their recovery: physical functioning, schooling if they had gone back to school, voluntary work, paid employment.

So, they were long, cumbersome interviews, and at the end we said "Is there anything else you'd like to tell us?" And people told us positive stuff, not just negative. There were all the things that we've already discussed. But people told us things like, "I feel lucky that I had my stroke, because it's made me value my family more", or "It's made me actually cut down on work." "It's made me give up smoking, eat healthily." "I've got more support, my family stepped up when I hadn't seen them for years." So there are some really, really positive things that come out of a terribly negative event.

And it's okay to be positive about the fact that you've had a stroke. You don't need to feel strange that you've seen some benefit in this event.

Chris: Great. Well, thank you for that very positive message to end on there. And thanks again for talking to us today.

Maree: Oh, it's my pleasure. Thanks for having me.

Chris: That was psychologist and researcher Associate Professor Maree Hackett. And I'd also like to thank Lisa Mangwiro once again for coming in. Thank you, Lisa.

Lisa: Thanks Chris.

Chris: Now remember, if you want to speak to Lisa or another health professional, you can call StrokeLine on 1800 787 653. That is actually 1800 STROKE, or if you like you can go onto EnableMe and you can ask a question there and get a response from health professionals and other stroke survivors.

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It's a place where stroke survivors, their carers and supporters, can find information, share their experiences, and inspire each other with their recovery.

Signing up is free, and takes just a minute. It allows you to post questions and comments, set and track your own recovery goal,s and connect with people who understand exactly what you're going through.

It's filled with evidence-based resources, videos, and stories. It's everything you need to grow stronger after stroke.

Sign up now in seconds at enableme.org.au.

Chris: And that is all we have time for today. If you like what you've heard, please take the time to give us a good rating and review on iTunes, as that will help other people find this podcast. And thank you once again to our guests Ali Earley, Maree Hackett and Lisa Mangwiro.

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.

Stroke in your 20s and 30s

Episode 14, 6 November 2017

Read the transcript below

Stroke doesn't discriminate, and we're hearing more and more about young people having strokes. When you're younger you can experience the same physical effects, but the impact on your life can be very different. The nice, smooth path that you've mapped out can drastically change course.

In this episode, we talk about what it's like to have a stroke in your 20s and 30s, and to have to set a new path towards goals like a career and relationships. And to deal with invisible stroke impacts while trying not to become invisible yourself.

Our guests are Ali Earley, a young stroke survivor, former nurse and now Stroke Foundation volunteer; Assoc. Prof. Maree Hackett from the George Institute, who has researched the psychological and social factors affecting young stroke survivors; and Lisa Mangwiro from StrokeLine.

Podcast transcript

Download the podcast transcript (RTF 274 KB)

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.

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

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

Chris: Stroke doesn't discriminate, and we're hearing more and more about young people having strokes. When you're younger you can experience the same physical effects, but the impact on your life can be very different. The nice, smooth path that you've mapped out can drastically change course.

In this episode, we're going to talk about what it's like to have a stroke in your 20s and 30s, and to have to set a new path towards goals like a career and relationships. And to deal with invisible stroke impacts while trying not to become invisible yourself.

Now to help me with this conversation, I have in the studio Lisa Mangwiro from the Stroke Foundation’s StrokeLine. Thanks for coming in as always, Lisa.

Lisa: Hi Chris, thanks for having me.

Chris: Now, I imagine that you've ... You've spoken to a lot of young stroke survivors on the phone about the particular issues that they face?

Lisa: We certainly have Chris, and I actually think this topic is a very interesting one in that in previous podcasts we've often spoken about specific topics and sort of narrowed it down to those, and today of course we're really looking more broadly at how stroke impacts a younger person. And what we find on StrokeLine is that there is such a huge difference from person to person.

Chris: Okay, well look, to talk about those kind of broader issues, and later on we'll be speaking to psychologist Associate Professor Maree Hackett. She has done some research on the challenges that face young stroke survivors, including that of returning to work, which is a big one.

But first, on the line we have Ali Earley. Ali is originally from Vancouver, Canada, and she was a registered nurse when she had a stroke at the age of 30. Now she currently volunteers with the Stroke Foundation in our Brisbane office, and she does many other activities that I'm eager for her to tell us all about.

Ali, welcome to the podcast.

Ali: Thanks, Chris.

Chris: Now, I did touch on your stroke story there in the introduction, but yeah, can you just please tell us a bit more about when you had your stroke and what happened?

Ali: Sure. So, in April of 2013, it was the 13th to be exact, at the age of 30 I was actually just starting a night shift. I worked in an emergency department and I went in to a utility room. And, when I was standing in there I felt this strange sort of pop sensation, and the most intense feeling of nausea. Really hard to sort of describe, 'cause I've never felt anything similar or since in my life. And that's sort of all I remember. I was found unconscious by co-workers sometime later. I was told that I had a seizure, they witnessed it, and that I was also very combative, and confused, and in and out of consciousness while they were trying to diagnose and figure out what had actually happened.

So, I was ... Unfortunately I had a ruptured cerebral aneurysm to the right posterior ascending communicating artery. And resulted in a subarachnoid haemorrhage. So, the hospital that I worked at doesn't have a neurosurg. department so I was transferred to a sister hospital where I had endovascular coiling performed. Very thankful for that procedure. I know it's a bit of a newer method that's used, but also being non-invasive, the recovery time is a bit shorter, so I was very lucky with that.

I spent about three weeks in the hospital and I would say my recovery in the hospital was quite unremarkable. It was quite progressive in that process. I did have a lot of symptoms. Pain control was a huge problem for me. Also, along with that is I had lost all my stamina. So, I was previously a very healthy individual. I had no stamina to stand up or move around as I pleased, and I had a lot of problems with cognitive factors, such as memory, concentration, being able to hold a conversation. And the world just felt so much more intense. Lights were a problem, noises, just sounds in general were completely overwhelming. My brain had somehow lost the ability to sort of filter out all of those environmental stimulus that I was facing.

I was discharged after three weeks and went home to my partner, and I spent the next several years recovering, to sort of where I am today.

Chris: Great. You still have some lasting effects though, I believe, including the sound. Is that still an issue for you?

Ali: Yes, it is. So I do have some lasting impairments. So, physically I'm quite thankful for where I am physically. I don't have any visible impairments. Some people say I get quite glassy, so if you have a conversation with me, maybe about 30 minutes or so, my eyes start to sort of glaze and I lose focus. But other than that, physically I'm good. Most of my, sort of, I would say residual effects, are invisible. So I struggle a lot with chronic migraines, fatigue. I still have hearing issues, which was a tricky one because we weren't aware of what it was for quite a while after. So that was quite a challenging one to identify and diagnose.

There are some mood instabilities, and – I still face this today – is some anxiety and irritability. Hormonal imbalances, 'cause of how that's damaged sort of my endocrine system. And then cognitive challenges as well.

Chris: And have you had to, like, make adjustments in your daily life then, to these sort of things, to cope with some of these impairments?

Ali: Yeah, absolutely. The way I sort of look at my life now is, my old life is over and this is my new life. Some days it's for the better and I'm super thankful that I'm here and I can move my limbs, and I'm able to still contribute to society. And then there's other days where I'm mad at the world and "Why did this happen?" And you know, I think very reasonable feelings to have. But I've found many ways to sort of cope with some impairments that I would have, or maybe the imperfections, would be the right word to use.

So, I've had to change a lot of hobbies. I used to run trails. Being from Vancouver, we have lots of big, beautiful mountains, so I liked to go run in the woods. I have problems with proprioception, so that sort of, brain-foot connection is not so good anymore, so there's some problems with stability and balance, and stuff. Also, I loved concerts and live music. And that's just ... It's just not on the table anymore.

But that being said is, I can't bubblewrap myself and I definitely can't control the world so I've found ways to compensate for that. And some of the things that I've found that work really well are, I had custom made earplugs, so I wear those out in the community, especially when I know I am going to a loud place. And maybe you wouldn't necessarily realise it, but the cafeteria and the food court, or like a food court in a mall, is one of the noisiest, overwhelming environments to be in.

I've also found other ways to manage, such as I like to plan my day so that I can manage my energy levels. When I see friends I sort of set timelines. Like, I'll have lunch for an hour or coffee for an hour. I take very strong medications for migraines. They do have some side effects but for me, it's worth the trade-off. I wear sunglasses and such to sort of dampen the sensitivity to light and stuff. So maybe I'm a little bit of a strange person out there with my sunglasses and my earplugs, but I think we all are in our own right, right?

Chris: Yeah, look and you know, wearing the sunglasses is you know, at least you can just pretend you're trying to look cool, I suppose.

Ali: Exactly. And my earplugs, they're actually clear so you almost can't see them unless you look really closely.

Chris: Okay, now we talked about how returning to work is kind of a big challenge, and certainly part of getting your life back to normal. How did having the stroke affect your employment?

Ali: Yeah, so since I was young – this is a bit of a precursor – but since I was young I always knew I wanted to do something to help people or animals. And nursing sort of seemed the path for me, so it's not only my career but it's also my passion. And then that also became a goal after my injury, was to return to work in some capacity. I knew earlier, after my injury, that I wouldn't be able to return to emergency. That just wasn't possible, and I was okay with that, but I thought I would be able to return to some type of nursing.

I'm very lucky to be part of a union and there's a collective agreement. And there was an accommodation process that ensued in the winter of 2015, so about two and a half years after my injury. My recovery was quite slow and not very linear, so I did have some ups and downs along the way, which is why it took so long, I think, to get there.

So, I had a gradual return to work that was ... It was a bit of a battle to develop one that seemed reasonable for everybody that was involved. My doctor and I were fighting for a six month return to work, and the employer was looking more at six weeks. So, we weren't really meeting eye to eye, but we figured "Let's just start it and see what happens". Unfortunately, it didn't work out.

So, that was ... I have ... And you know, there's a multitude of factors. I don't blame the employer 100 percent. They definitely had their part to play, but also, I knew that medically there was some stuff going on for me that didn't make it as easy as I thought. Or not as easy, but as smooth as maybe it, as it could've been.

I did know that fatigue and migraines were gonna peak initially when I started back to work, but I thought, maybe if I had enough time working at a certain number of hours I'd be able to plateau and sort of adjust to that, and then start building again. But I didn't really get enough time to do that.  So, that being said, this is what did the most damage to me. Not being able to go back to work was devastating. That was a huge part in sort of, my ability to say "Look, I have this injury and I'm gonna get back to my life. I'm gonna find something that's gonna make me feel like I succeeded from this. That I pushed on." And so, when that didn't happen, I just sort of fell to rubble, and I had to learn ...

I guess that's when I really realised that the impact of this is constant, and it's always changing. That acceptance peace, not accepting failure, but accepting that life is different now. Does that make sense?

Chris: Yeah, absolutely. Look it's ... Certainly that sounds like, yeah, a great way of coming to terms with that big impact there. What about things though, like I don’t know, your support networks around you and personal relationships, and that sort of things. I mean, you were in a relationship at the time but I also imagine your family was overseas.

Ali: So, my injury did happen in Canada, so my family was there for that. I was in a relationship when my injury happened. And I remember one of the nurses on the unit said to me "This'll make or break". And I remember looking at the stats, strangely, when I was in there one day. I don't know what I was thinking, but it was like 90 percent of relationships fail after an injury this life-changing, and mine was one of them.

It wasn't anyone's fault, it's just that's what happened. I needed to move forward with my life in a positive manner and I needed someone that was gonna be accepting and understanding of that. And I don't think that that was the person. So yeah, that didn't work out.

Also, that being said, my family was absolutely amazing. They did everything. They never cried, they never showed weakness, they did what they needed to do to get me through the day and to get me through the month, or whatever I needed they were there. They were my absolute advocate.

And then once I got to a point where I was self-sufficient enough and I was capable again, I became my own advocate. So, definitely family and finding your own voice to speak up for yourself, those are key.

Chris: And did you find that your experience in the health system, that gave you an advantage in terms of, I suppose, speaking up for yourself and advocating for yourself?

Ali: Oh definitely. Yeah, I have a very incredible doctor who I should also acknowledge. She's fantastic and she was very supportive all the way along. I would show up in her office with like, "Well, look at this research study about how brain damage can affect your endocrine system." And I'm like, "Maybe we should start looking at that. Maybe is that something we should be testing?" So, she was very supportive of the fact that I had all this nursing and medical experience that I was always pulling from, and always trying to find something from that knowledge background to apply to my case.

And also with the basic things like, one of the principles that I sort of adopted is "Pain is not gain". So with exercising and such, is that you know, you're always kinda told if you want to build big muscles you gotta go work out, and it's gonna hurt, and da, da, da, da. And I think with stroke patients that that's not the case and you just wanna work to a point where you feel comfortable and your body feels good, and that's it. And I think that's something also from nursing and that medical perspective that sort of facilitated that development of these ideas that I have.

Chris: This is something I just wanted to ask Lisa about, because I know that not everyone has these kind of advantages of that medical knowledge and those connections. So Lisa, what can people do if they're ... I guess they need some extra support and they don't have it in that way?

Lisa: Yeah, definitely. Self-advocacy is definitely… can be a huge, huge challenge. And like Ali mentioned, having your close circle of people that you do trust and that you can go to for support to help you navigate through those challenges. That's a really sort of helpful thing.

It's also important to have your team of health professionals around you to help support you through your recovery as well. So that'd be the key, key things.

Chris: What about seeking out other stroke survivors, or other kind of support networks like that as well?

Lisa: Yeah, definitely. And many ... You know, on StrokeLine we often have conversations with young stroke survivors who report that they don't really feel like many others understand their situation, or sort of share their experiences. And often having a group of people to talk to, to help normalise those experiences can really be helpful. So, as you mentioned, this can be connecting with stroke support groups. And there're some around that specifically cater for people that are younger, and they're often, yeah, a good sort of point of contact as well, forming those networks around there.

Chris: So it's interesting what you said there about, I guess, finding other people who can normalise what you're feeling, and understand that's normal. So this is similar to what, Ali, you were saying about acceptance and accepting the impact of the stroke, which sounds like it's been a big benefit for you. How has that helped you to, I guess, redefine your life and find new things to do that you couldn't do before?

Ali: Yeah, it's definitely ... Actually, you know what? Sorry, can you repeat that question one more time?

Chris: Yeah, the question is basically. how has your acceptance helped you. I guess. to find a new path in life, and to find new things to do when you can't do the things that you could do before?

Ali: Sure. So yeah, acceptance has definitely been a big piece in my life. And it's not ... I think it's really important to highlight that I'm not accepting defeat, I'm just accepting that my life has changed. And, I think that that's ... I can't speak for other stroke survivors, and everybody's experience is different, like it's been well highlighted. But for me, accepting the fact that this injury happened, it had to happen. I just like, couldn't imagine going through life playing a victim. I just, I wasn't going to be that person, so acceptance was, yeah, it was very important.  And then moving on from that, okay now what? So, I've accepted that this injury has happened, now who am I as a person moving forward? Am I a person that had a stroke, or am I a person that had an injury that happened, and what am I gonna take from that? And I think maybe that's where one of the things with working with the Stroke Foundation was so important, is trying to find a voice for myself, but also for other people.

And, I remember not long after my injury, actually I went to a conference and it was fellow stroke survivors. It was devastating to see. I just, I was like "I don't think this is okay, and this is not the way we should be moving". It was very much a ... it was a rant, which you need to do sometimes. You need to complain and you need to get it out there, and I definitely have those days too.

And, I think that that's where the Stroke Foundation Australia is amazing. Going to the Young Stroke Survivor conference, everybody was positive, and they had good things to say, and they were fine being the light in this injury. And I think that that's what I found, is like, find the light, find the things that make you happy.

Who are you without work? If you went up to somebody and said, "Who are you", not "What do you do for work", but "Who are you as a person"? That's all something we could probably ask ourselves, and maybe not be able to answer, but should think about trying to answer.

Chris: And have you found new, I guess, new paths in terms of work and… or new interests that you're now concentrating on?

Ali: Yeah, so I love exercising, and I love health and fitness stuff. Obviously because I know the value in taking care of myself, especially now, but also because that it's so good for my mind and my mood. So I swim a lot. Brisbane is so blessed with good weather and all the outdoor pools, so I've been swimming a lot outside. I also have a dog who's been my rehab assistant from the beginning, so I spend a lot of time outside in nature walking with him.

I've also become quite artistic. Before, I would draw a stick figure and people would be like "What is that?" And now I've taken up pottery and I'm getting quite good at it, so if you guys need a mug, I'll make you one. I'm really finding some things that I think are helping with mindfulness as well, and pottery is definitely one of them.

Chris: Great. Have you got any other takeaway tips that you can give for other stroke survivors out there? Any last sort of message you want to give out?

Ali: Sure. So, I have a few, if that's okay?

Chris: Sure.

Ali: The first one is, it's okay to accept help. Don't go this alone. It's far too challenging and you'll become isolated, and it just won't be a good result. So make sure you ask for help, 'cause everybody needs help at some point in their life.

Another big point that I've found important is don't accept your label. Medically I'm termed disabled, but in my eyes I don't look in the mirror and think "You're a disabled person". Whatever that means to somebody, I don't know. But to me, I'm not a disabled person. I'm just somebody that has imperfections just like everybody else. So don't let that define who you are as a person.

And seek counselling. Everybody needs to go to the gym, and work out, and be healthy, but we have to work on our minds as well. S, it's a life changing event and you have to make peace with it somehow, and the sooner you start going to counselling and start talking about it, I think the sooner the healing process is gonna happen.

And make sure you drink lots of water.

Chris: Well, fantastic. Well, thank you very much Ali, for sharing your advice and your story.

Ali: Thank you, Chris.

Chris: That was young stroke survivor Ali Earley.

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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. And she has a background in health psychology and epidemiology, and she recently led a research study called POISE ¬– that's P.O.I.S.E. – which stands for Psychosocial Outcomes in StrokE, and it particularly looked at young stroke survivors returning to work. So, I think she's the right person to talk to for this topic. Thanks for speaking to us, Maree.

Maree: My pleasure, thanks for having me.

Chris: Now we've just spoken to Ali, who told us about going through… I guess getting to a stage of acceptance after going through sort of a grieving process and then coming to terms with it. Do you think that this sounds like a typical process that stroke survivors have to go through to come to terms with the changes in their life?

Maree: Yes, I'd say that sounds a lot like what the people we have spoken to tell us happens. And it's really nice to hear that she's reached the acceptance stage actually, because that doesn't always happen for everyone. And that's not necessarily a bad thing. By that I mean you might see acceptance as saying "Okay, I'm not going to progress any further, so I'm going to stop my rehab", for example. And some people say "Actually you know, I'm not going to accept this, I'm really going to push forward".

But that whole process from the beginning, the reaction to what's happened, this is a very serious life threatening event, and then all the physical and psychological changes, and family changes, and financial changes. Change is everything, so that's a really long and interesting journey, and it's different for everyone.

Chris: We've spoken to you previously about some of the psychological effects. You were a guest on our previous podcast on depression and anxiety. Could you expand on some of these other issues that stroke survivors might face?

Maree: Sure. So, I think one of the key things people speak about is ... Let's start with the negatives and I'll move on to the positives. I think that's important.

A lot of people speak about the loss that they experience after a stroke. Now, there's loss in function, which everybody can see and in some ways that's easy to understand. The fact that it's very visible so people can see if you're struggling to get dressed in the morning, or you have difficulty walking.

But there's lots of other emotional reactions where you can have a loss of your ability to control your emotions, so you might find that you are laughing more at times when it's inappropriate to laugh, but more commonly people can get quite tearful in situations where they wouldn't have normally cried before. And that can be very disabling, so you sort of lose your perception of you, in a way.

People can lose their cognitive abilities, so they might have difficulty understanding, or they might understand what you say and have difficulty communicating back to you. And that results in great frustration for people. Frustration is a really common theme that comes through with everybody with stroke.

There might be fear. People worrying about having another stroke. Worrying about their future, you know what's going to happen with their job, what's going to happen with their family. And that comes back to loss. They might lose their licence for a short time or for a long time. And so people can go through a whole grieving process about all these things that they hopefully, eventually reach acceptance of to some degree, but not so much so that they don't keep trying to improve.

Chris: Lisa, I want to ask you, what do you ... What about things like relationships that people might have and the changes in their role in a relationship due to their stroke?

Lisa: So, managing role changes and the effect that has on relationships is something else that comes up quite a lot of on StrokeLine. And being open with family about how you're feeling, and encouraging them to do the same, can often be very helpful. And we also obviously know that the stroke doesn't only affect the survivor but those around them. So, just that concept of being really open and honest with those around you and seeking support if needed.

Chris: Okay. Now Maree, I mentioned your research study, POISE, can you tell us a bit more about what that actually looked at and what it found?

Maree: Sure. Well, we included people up to the age of 65. Adults, so they had to be at least 18. And they were just recruited from New South Wales, but we… in 21 months, we recruited 441 people with a stroke. So, it's not an infrequent event in younger people. In fact, they think it's about a quarter of people under the age of 65 having strokes now, and that proportion’s risen.

And what we did, is we assessed people within a month of their stroke to talk to them about their early experiences, and they also told us then about what they were like before they had their stroke. So they retrospectively told us whether they were working, whether they were able to take care of their everyday activities, for example. And then we spoke to them again at six months and twelve months after stroke.

We were particularly interested in looking at who returns to paid work. So we were looking at positive things, but we were particularly interested in whether or not depression had an impact in return to paid work. We're currently writing papers about return to unpaid work, which is equally important and also quite interesting. But one of the main things we found is that if you are functionally independent, so physically can get yourself around and you don't need help from another person, then you're much more likely to return to work.

We also looked at driving and who was likely to return to driving. Do you want me to talk about that now?

Chris: Yeah, that's interesting, because I think you found some unexpected things there, didn't you?

Maree: Well, I'm not sure they're completely unexpected, but it's quite good to document them. What we found is that quite a few people returned to driving, that was the good thing, a positive thing, they wanted to return to driving.

But I should explain that if you've had an event like a stroke, then the guidelines – and these are the traffic authority guidelines – suggest that you shouldn't drive within a month of your stroke. And that's because they don't want you to be unsafe on the road. You might not have been assessed appropriately for your, say, vision, your reaction times. And if you had an accident – even though it's hard to get an insurance company to confirm this explicitly – if you drive within that one month period and they find out you've had a stroke, they might not pay out even if you've got insurance. So it's really important, for multiple reasons, that people don't get behind the wheel.

But we did find that men and physically active women – women who didn't have any problems before they had a stroke – who were independent so they probably had quite mild strokes, were more likely to get behind the wheel, especially if they had returned to paid work. So that's a bit of a concern for us.

When we talked to that particular group about were they not told, or did they remember being told about not driving, because most healthcare clinicians will tell us that "Yes, we tell everybody they shouldn't drive for the first month", most of them said they didn't recall being told.

Now, we can't verify that they were told, so they might not have been told, but there's an issue there with people getting behind the wheel, because that's self-assessed that they're okay, and they might be being overconfident. We didn't go on to whether or not they actually had any accidents in that time, that wasn't part of our study.

But, clinicians don't like having conversations with people about not driving, and possibly losing their licence altogether. They can be quite wary about assessing people’s fitness to drive. Again, so if they have got an obvious, clear problem, say a physical disability that makes it unable for them to use the brake or the accelerator, or change gears if they're in a manual car, and so there might be a really obvious functional problem. And how do they assess that that's resolved and that they now ... people are now fit to drive?

It's a very difficult scenario for everyone and that's one of the things that when people talk about loss and grief, it also ... The inability to drive, it impacts on your independence, it impacts on your ability to return to paid work. It's something that we sort of take for granted and see as a right, the licence to drive, but it's not really true.

Chris: In terms of that I guess, it is part of that getting back to normal and returning to paid work, it goes with that as you said. Do people, when they do return, do they tend to go back to the ... do you find they go back to the same role, or are there adjustments that need to be made in the workplace for them, to maybe a different role?

Maree: Like it varies, like about three quarters of our sample had got back to paid work within that first year. I think it was around 30 percent who were ... of those who went back ... they had been in full-time paid employment, and they'd got down to part-time paid employment. So there's an adjustment there that would have had to have been agreed between the employer and what the person was capable of doing.

We did ask people whether employers made any changes to help them return to work, and some did make changes to the workplace, and although we didn't delve too much deeper, we assume it would be things like making sure that they have an accessible space to work, or they have the right devices and tools to conduct their job. But the most common sort of change in the workplace was that they changed the schedule or the hours. They provided some training or some assistance in some way for that person to return to work. So they were really positive things, but you know, we could do it a lot better.

Most people returned to the job they were in, or a similar job to the one they were in before their strokes. That was nice to see, that they weren't all having to go off and get new jobs.

Chris: I imagine though there are some unique challenges when you are applying for new jobs after a stroke. Lisa, what do you ... what can you tell us about this, some of these obstacles about applying for a job? And particularly I suppose, the dilemma of how much to tell a new employer of about your stroke.

Lisa: That's a tricky one. Look, I think the decision about returning to work, whether that's paid or unpaid, and even how much to disclose to a prospective employer, ends up being a very individual decision and one that's personal. It'll depend from person to person, and quite a lot of factors come in to play there. So, you know, it really depends on you, how the stroke has impacted you, and obviously the nature of the role.

So, what we often say and suggest on StrokeLine is the most important thing really when having a think about these things is to have a really good understanding about what your rights and what your responsibilities are as an employee. And that's really the key sort of starting point there. And you know, like Ali mentioned, if you're a union member for example, that might be where you turn to. There are services like the Fair Work Ombudsman. That might be another option you want to sort of look into when trying to sort of ascertain, and make decisions about returning to work.

Chris: Okay.

Lisa: It's not a sort of one-size-fits-all approach, and really depends on quite a lot of factors there.

Chris: And I imagine depends on the level of cooperation of the employer as well.

Lisa: Of course, yep. And also looking into whether you involve your health professionals. So that might be an occupational therapist, your doctors as well, to sort of help you make that decision, and looking at whether their input as well would help you.

Chris: That's interesting. So Maree, what have you found in terms of the things that help people return to work. You know, whether it's action ... those adjustments you mentioned by the employers, or is it help from health professionals that perhaps will help people get back to paid work?

Maree: Well, we weren't able to specifically look at what health professionals did to help people return to work. But one of the odd things that we found, or slightly surprising things we found, was that people with health insurance were more likely to return to paid work.

And that kind of went against what we had expected at the beginning, because we thought, "Oh, they wouldn't have the financial constraint maybe", you know because they had some compensation to be able to not return to paid work. But we think it might have… the ability to have, and maintain health insurance, as a marker of usually a reasonably good income. And so, we think actually these people already had highly paid incomes and they wanted to return to work, and maybe they were able to purchase more rehabilitation for example, which then helped them get back to work.

There wasn't too much modifiable, which is what we look for that's really important. Like, the fact that men were more likely to return to paid work. We can't change your sex, or if we can it's not going to be in a way that's going to help you return to work.

So, the really key thing that's modifiable is being free of another person. You know, being able to attend to your daily activities. So that's where that rehabilitation, and if you've got rehab sessions scheduled, going to them and making sure you do the exercises at home, and making sure you're able to use all the devices that you have to assist you, is really key 'cause that was by far and away the main thing that got people back to work. Being physically able to get around.

Chris: Right. And in terms of things like the psychological impacts we were talking about earlier, those sort of things about coping with adjustment to life after stroke, who would you recommend that people talk to about those sort of issues?

Maree: That's a really good question. I think people’s natural tendencies are to want to talk to their friends and their family. And that's important, and you need to have those discussions. But there's something that you get out of talking to a qualified health professional, whether it's a counsellor, a psychologist, psychiatrist, that you don't get from talking to family members. One, they've got and I think the key one, is that they don't actually have a vested interest in your outcome. So they're not needing money from you working, for example. They are not already worried themselves about how you're coping or about how they are coping. They're just there to support you and to talk you through some strategies that might help you get on the right track.

So it's good to make sure you have good, open communication with your family and your friends, where it's appropriate to. But talking to an external person is probably going to give you something you won't get anywhere else.

And there's things like the Better Access scheme where people can have up to ten sessions subsidised, with psychologists, if they go to their GP and say they'd like to someone. So that's really important to know that you can go and talk to someone and you're not having to fork out an awful lot of money to do that. There might be some issues with a waiting list to get in to see that person, but once you're there, you can have the conversations you need to have.

Chris: Right. And Lisa, can people call StrokeLine to find out if, I guess, help accessing some of these services…

Lisa: You most certainly can.

Chris: …and find out what's available? Yeah?

Lisa: Most definitely, and some of the services might be state-specific and that sort of thing, so if people wanted to have a discussion about their specific situation, you're more than welcome to call us on StrokeLine, definitely.

Chris: Awesome. And counselling also was one of Ali's takeaway tips earlier that she gave us for other stroke survivors. How about you, Maree? Do you have any other advice and tips that you would give young stroke survivors, in particular?

Maree: Not necessarily advice, but just some ... talking about some of the things that we have had people say to us. It's not all negative. And one of the really odd things about the end of the POISE project. These interviews took upwards of an hour for most people. We asked about every aspect of their recovery: physical functioning, schooling if they had gone back to school, voluntary work, paid employment.

So, they were long, cumbersome interviews, and at the end we said "Is there anything else you'd like to tell us?" And people told us positive stuff, not just negative. There were all the things that we've already discussed. But people told us things like, "I feel lucky that I had my stroke, because it's made me value my family more", or "It's made me actually cut down on work." "It's made me give up smoking, eat healthily." "I've got more support, my family stepped up when I hadn't seen them for years." So there are some really, really positive things that come out of a terribly negative event.

And it's okay to be positive about the fact that you've had a stroke. You don't need to feel strange that you've seen some benefit in this event.

Chris: Great. Well, thank you for that very positive message to end on there. And thanks again for talking to us today.

Maree: Oh, it's my pleasure. Thanks for having me.

Chris: That was psychologist and researcher Associate Professor Maree Hackett. And I'd also like to thank Lisa Mangwiro once again for coming in. Thank you, Lisa.

Lisa: Thanks Chris.

Chris: Now remember, if you want to speak to Lisa or another health professional, you can call StrokeLine on 1800 787 653. That is actually 1800 STROKE, or if you like you can go onto EnableMe and you can ask a question there and get a response from health professionals and other stroke survivors.

Announcer: EnableMe is Australia's online stroke community.

It's a place where stroke survivors, their carers and supporters, can find information, share their experiences, and inspire each other with their recovery.

Signing up is free, and takes just a minute. It allows you to post questions and comments, set and track your own recovery goal,s and connect with people who understand exactly what you're going through.

It's filled with evidence-based resources, videos, and stories. It's everything you need to grow stronger after stroke.

Sign up now in seconds at enableme.org.au.

Chris: And that is all we have time for today. If you like what you've heard, please take the time to give us a good rating and review on iTunes, as that will help other people find this podcast. And thank you once again to our guests Ali Earley, Maree Hackett and Lisa Mangwiro.

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.