I’ve had a stroke. Now what?

Podcast transcript

Announcer: Welcome to the Young Stroke Podcast, a podcast for young stroke survivors and their support crew. Bringing together younger survivors to share their stories along with tips on living a good life after stroke. The advice given in this podcast is general in nature. Discuss your situation as needs with your healthcare professionals. This series is presented by Australia’s Stroke Foundation and funded by the National Disability Insurance Agency.

Simone: Welcome to the first episode of the Young Stroke Podcast series on recovery. Stroke recovery is a huge topic and in this series we’ll be exploring that early phase. From there we’ll take a look at recovery mindset and finding the new normal after stroke.

And in this episode, you’re going to meet two amazing young stroke survivors with two very different stroke recovery journeys. You’re going to hear about their experience of the early days after their stroke. Be sure to stay till the end so that you can hear their top tips on navigating those challenging early days and also living a good life. Let’s meet young stroke survivors, Adrian O’Malley, disability advocate and horticulturalist, from New South Wales and Beth Browning, a social student nurse from WA. So welcome Ade and Beth, it’s fantastic to have you on our first episode in this podcast series.

Adrian: Thanks for having me.

Beth: Thank you for having us. Thank you.

Simone: Pleasure. So Ade, you’re a bit of a veteran in the stroke community now. So I might start with you. Could you share a little bit about your stroke journey?

Adrian: Look, Saturday morning, August 2006, woke up found coordination going, feeling a bit funny. Went to hospital, got out nine weeks later with a stroke and life-saving heart surgery, then months and months of rehabilitation. And chuck in childbirth 10 days after getting out of hospital into the mix and you’ve got a pretty busy time in my life.

Simone: Wow. And the stroke impacts that you’re living with at the moment.

Adrian: The main one is the one that I can’t see and you can’t see and that’s vision impairment, which means no license, which meant career changes, it meant loss of independence, a whole lot of stuff. So I have what’s called a hemianopia, “hemi” meaning hemisphere, so one side, “anopia” loss of, so I’ve lost my right vision in both eyes. Which means I trip into things, I bump my head, all that kind of stuff. I’m also lucky to be left-handed because I’m right side effected. So I have a hand and arm that are functional but only in the growth sense, I don’t have any fine motor skills and my walking is a bit affected as well.

Simone: And so a lot going on for you at the time of your stroke, about to become a first time dad, what was going through your mind in those early days?

Adrian: My wife Connie was really good to me in that I was not in a nasty way, but very selfish. I said to her that I couldn’t attend birthing classes or prenatal school or any of that kind of stuff, I’m stuck in hospital, I can’t get there. And I said, “I need to get well.” And she just said, “You do what you need to do.” Because I was just motivated to get out of bloody hospital so I could be a dad and be around. And so Connie very kindly just let me be so that I could do what I needed to do.

Simone: Wow. So Beth, in contrast to Ade’s story, you’re relatively early on in your stroke journey and I believe have just recently passed the one year mark. Could you share your stroke story with us?

Beth: Yes. Yeah. So I had my stroke of also in August, but it was last year in 2019. It was just a normal night for me, I went to bed and then I was on my phone my typing just started to going just complete gibberish. So obviously I went to emergency and I was at hospital for about a week and a half. The only thing that was really affected was my speech. And that recovered after about 15 hours, I’d say. But we had lots of tests done and they found a hole in my heart, which ended up being the suspected cause of my stroke. So I had surgery to fix that on my 20th birthday in November. So for me, my recovery has been a little bit different in the sense that my speech did recover. I was very lucky for it to recover within that day.

Simone: Huge, huge for somebody to go through. And what was going through your mind at that time finding yourself in hospital with a suspected and then confirmed stroke?

Beth: I was honestly terrified when it was happening, in a panic. Obviously, you don’t think that something like that can happen at 19 and the ability not being able to communicate and pronounce my words. And then when I was saying words they were coming out different and I knew what I was saying was wrong, but I couldn’t correct it.

So I think the first few days while I was in hospital I was just scared. I was lucky to have my family around me because I still don’t remember I reckon half of my hospital stay and the things that were said. So I think the thing that was going through my head most was like, “Why?” Like, “Why me?” Everyone thinks that and just the confusion because everyone around me was also confused with me being so young. So it was a very daunting experience, but like I said, I did have the support around me from my family, which made such a difference.

Simone: Thank you for sharing that what’s been most challenging for you to have had a stroke at such a young age, do you think?

Beth: I think for me because my main deficit you could say from my stroke would be fatigue. On the surface everyone’s just like, “Oh, she had that stroke last year.” I can still go out and see my friends. And I think in everyone else’s eyes, I can still look and act the same as I used to. It’s very hard to try and explain myself because some things I don’t understand myself. Why I get so tired all the time, or why I have to go have a nap at 20 years old in the middle of the day.

So I think that has been one of my biggest challenges is getting used to my new normal and realising I can’t really do things that maybe I used to do. And realise that I am still very recent since my stroke. So just getting used to everything and fatigue is definitely something that I’m still learning to manage.

Simone: And there tends to be the stronger focus perhaps on the physical side of recovery, getting back to walking, for some people that’s talking and eating, showering, getting yourself home and work if that’s a goal at the time. And Ade do you feel like there’s enough on the mental side of recovery and what was your experience of that part?

Adrian: I have felt this almost from the get go in hospital, the focus is on getting your body right. But I recall a social worker coming and seeing me and asking how I was going and in talking to me, she said, “Oh, you’re doing well.” And that was it. There was no conversations around your mental health.

And I’ve felt this for 14 years now of the 14 years I’ve had a stroke that the focus needs to be on getting… My personal opinion is get your thinking right from day one, so that you can accept whatever your recovery pathway takes you. Because you can make a great physical recovery, but not want to leave the house because you’re depressed. You can make a mediocre recovery, but still want to engage in life if you’ve got your thinking right. And I’ve been hammering on about this for years, I would like to see the thinking change a bit around recovery to how’s your thinking? How’s your acceptance, that kind of stuff. Are you upset because a lot of people are going to be upset about stroke.

And stupidly, for me, I accepted that I would never drive again, but I used to get really frustrated and angry about not doing up my shoelaces. Not being able to drive is a bloody big thing in life, I wear slip on shoes now. I don’t have to deal with shoe laces. But I used to get angry and upset and being angry and upset is not a good way to go through life. I think acceptance with stroke is going to be a lifelong arm wrestle. And it’s the stuff that you won’t accept is the stuff that you’re going to have to deal with. The stuff that you accept move on. But the stuff that you struggle with is the things that you might need help with between your ears.

Simone: Beth, have you had to ask for help or receive help in these earlier stages? And how was that for you?

Beth: I think for me, because I was only 19. I was being treated as an adult but then also because my mum was there a lot with me thank goodness through all of that time. I was being treated half and half because obviously my mum was there and she remembers a lot more stuff from that time than I do. And I think that I didn’t ask for that help that I needed at the time. I think the same thing with the whole mental health side of things, I think people kind of saw me as, “Oh, she can walk, she can talk, she’ll have this surgery and then off she goes.”

And because I had my mum there and my dad and my whole family, I think they just saw me as a very able, supported person going through a traumatic experience. I think they saw me as just, “Oh, she’ll be good.” But I think that maybe I didn’t ask for that extra help when I was in hospital or I was asking questions without getting many straightforward answers. And I think that if I were to go back and change something it would be in the hospital maybe when I was alone just to go and talk to someone, even just a nurse manager or clinical nurse specialist just to be like, “Hey, I’m struggling a little bit, where do I go from here?” Because I think I just got handed everything and got all the clinical side of things down. And then when I got home, I was just thrown into this limbo of I’m going to have my surgery at some point soon but where am I at now?

Simone: And Beth you’ve just passed that really crucial or big milestone of one year after your stroke. If you’re comfortable sharing, how did you spend your first anniversary?

Beth: It was a weird feeling I think that whole day. Because I had it at 10 o’clock at night, so it was almost like it was like the whole day. We would countdown to the exact time that I it had last year, which is weird. But even though I knew it was not going to happen again at the same time and the same day, I still had this really almost anxious feeling, but a little bit like I was waiting just to pass that exact time. But I think I just spent the day just trying to keep myself busy and then I went out for dinner with my family to our favourite restaurant. More of just spend time together and to do something less of a big celebration or anything. It was more just to keep busy and just spend time as a family. So it was a very just weird day for me. I think that I didn’t really think about it much until the day after. And I was like, “Oh wow, okay. It’s been a year.”

And you see the memories pop up on your phone of those days that you’re in hospital or if I took a photo of something it pops up. So I think that was more daunting than anything just being like, “Oh wow, okay. This time, last year was very, very different for me.” But I just stayed busy and that was just the best way I could cope with it really.

Simone: Ade how do you spend that milestone every year?

Adrian: Some are better than others. Some stick in my mind more than others often with rock and roll actually, Simone. I love to go and see bands. And there’s often one of my really favourite bands plays around about the weekend of stroke-aversary. So I just go to a gig and say up yours stroke and do what I like to do. But as I said, some are better than others.

The 7th anniversary, I was walking from the station to pick up Eve our daughter from the after school care and as I do sometimes I tripped on a crack in the footpath and ended up in the gutter. And I just wanted to cry, I just wanted to cry because that’s what stroke can do to me. And I literally and figuratively picked myself up and dusted myself off and kept going and stop the bleeding because I had to go and pick up a little person from after school care. So that was a bit of a sucky one.

The 10th anniversary, I contacted one of the OTs that I dealt with. And I went back and I visited the stroke unit and the rehabilitation unit and the cardiothoracic unit where I had heart surgery. Because if we didn’t have that surgery I’d be dead. And after 10 years I wanted to go back to where it all started, and reflect on where I am today to where I was 10 years ago. I saw people die in a stroke unit. I saw lives wrecked in a stroke unit. So it was a good reflection just to remind me to keep on living well.

Simone: Yeah. So I love that reflection and reminder to keep living well. And it sounds like your experience each year varies really depending on the stage that you’re at and what you’re feeling. And while I’ve got you both here, Beth is there anything you’d like to ask Ade, as a peer who has been through this journey and is a little bit further on down the track.

Beth: Because for me my main recovery at the moment is still struggling with fatigue would be, how did you deal with it? Did you experience fatigue in your earlier years, or do you still experience it today? And how did you learn to get around it and keep going and work and live, especially with a newborn and everything.

Adrian: I’m not going to work, and this is a decision I made when I got back to work. I’m never going to work full-time. So I work a four day week, which instantly is a 20% pay cut for the rest of your working life and at 34 that’s 30 years. But if I’m going to get to 65 and be okay, I don’t think it’s sensible to work full-time. And so unfortunately that has a financial impact upon my wife and my child and the hip pocket effect of stroke is going to over the years cost me hundreds of thousands of dollars. But from a mental health and a physical wellbeing point of view, I don’t think it’s sensible to work full time. Think about how much and how hard you want to push yourself because that might be an unfortunate financial decision but a wise decision in the long-term.

Beth: Thank you. Yeah. I’m just learning to listen to my body and see if I’m too tired, I’m too tired. Go have a nap and yeah. It sucks sometimes, but it’s just looking after myself. So thank you for that.

Simone: Ade being a number of years since your stroke now, what are your top tips for someone in the earliest stages of their recovery? How can they best prepare for what might be to come?

Adrian: I was thinking about this, be kind to yourself, but also no one else can do it for you so flog yourself as well. And stroke recovery there’s no one there to hold your hand or not in my case. It is climbing a mountain and as a bush walker, I have climbed quite a few mountains and that’s difficult. So don’t set yourself up to climb a mountain, just think of recovery as a series of speed humps. And you go over speed humps all the time and you add up all those speed humps and you’ve actually climbed a mountain. For me, it was the second day in hospital, I was completely hemiplegic. So completely paralyzed on one side, and I was talking to my best mate and I said I wanted to be bushwalking again this time next year. 12 months time, I want to be bushwalking.

And no one else owns that goal. The only person that owns that goal is me. So if anybody else had said, “That’s a stupid goal.” I would have not liked that. But Pat, my best mate said, “Yeah, let’s do it.” And so that dangles the carrot in my mind and I worked towards that and I did it. I did a four-day bushwalk. I started at exactly 12 months from discharge. But at the point that that goal was set I was a broken human being. I was not in a good way and I went over a lot of speed humps to start that bush walk. But if I’d have looked at it as a mountain that would have been difficult. So that’s that set yourself up for failure, set yourself up for success and it isn’t going to be easy but no one else can do it for you.

You’re the only person that can learn to walk again, or how to cut your steak or not belt your head on things that you didn’t see. So you’re going to have to become an expert in yourself. The other thing and I talked about it before was acceptance. Acceptance is not easy, but it is gentler than being angry. And I think anger is a waste. This is a personal opinion. Other people love to get angry and they love to latch on to anger and use it as a motivation. But I think anger to me was a waste of energy because I needed that energy to get well. So if it works for you, don’t use anger. I think anger is a cancer that you put in your head and you let it run around and you feed it, and it doesn’t make you happy or feel good. And I felt this for a long time, do the things that make you happy not the things that make you angry.

Simone: Thanks Ade, some really practical and wise tips. Beth what are your top tips at this stage for someone that maybe in the early days, what would you say to someone?

Beth: I think just asking for help. It sounds so simple and so basic but letting people know that, “Hey, I’m struggling or I need help with this and this.” Reach out to people that are there to help you and use the resources that people are suggesting. I think for me it was everyone was focused on, “Oh wow, you’re young.” And I was given a packet of information that had a lot of old people and it was just them getting ready to go back into care or just have a very slow life. And I was frustrated and like, “Well, can I go out and see my friends? Can I go on holiday? Can I go on an airplane? Can I travel? Can I do things by myself?” It was all of this unknown.

So just pushing for your answers. I was lucky again that I had my family and my mum’s a nurse and I’m studying to be a nurse. So I had a bit of a knowledge about stroke, very basic knowledge about stroke when it happened. But I think that I didn’t push enough even with the people that were looking after me straight away. I think I definitely would say don’t be afraid to really push until you get the answers because everyone’s handling me off to, “Oh, well you go see the heart people, you go see the head people.” It was very just no one really knew, no one was really managing me.

So just telling people that you’re struggling, reaching out, finding peer support. I didn’t know much about what was out there. So Googling it, going on Facebook, there were so many great people out there that are ready to help and be there for you. So I definitely say, reach out, you’re not in it alone, you’re not there by yourself. You’re not the only person in the world that it’s ever happened to. People are there to help you and help you get back on your feet. So that would be just my main tip. You’re not alone and people are there. So that’s probably my main thing.

Simone: Fantastic. And both of you are involved in the Young Stroke Project, the Stroke Foundation’s Young Stroke Project. And I think hopefully we’re going to address some of those gaps that you’ve mentioned as well around some of the information and resources. So just to finish up, I’d love to know Ade what helps you to live a good life, maybe one, two, three quick pointers.

Adrian: There’s going to be a kid walk in the back door shortly, she’s going to be 14 in two days. I’m going to cry. Eve came into life as ridiculous as it sounds, she came into… My stroke had to happen and it did cause I was a ticking time bomb and I was always going to have a stroke, I didn’t know it. She came into life at just the right time because I get to be a dad. She grows up with a dad, my wife isn’t a single mum. What else helps me live a good life? I’ve always done what I want to do in spite of a stroke trying to elbow in on what I want to do as much as possible. So going, I remember the first time I went and saw a band again and I love seeing a band. And the first time I got back in the saddle, I was like, “Yep.”

Adrian: And at 48 in COVID and not seeing bands, I got a big hole in my heart. And as soon as that part of my life returns, I’m straight back into going and seeing live music. I’m from a huge family. It’s very often the case that people who experienced trauma have people fall out of their life. And I have more friends now than I did at 34, and that’s all people I’ve met through stroke. So use it to your advantage. And I could have given Beth virtual hugs there because she had some great tips around you’re not alone and you’re not, you’re not alone. So if I could give three tips, one, don’t be too hard on yourself, two be really hard on yourself and do the things that make you happy because I would much rather go through life happy than, “Woe is me. Stroke sucks.”

Simone: Love that. Thanks Ade. And Beth, what helps you to live a good life after your stroke?

Beth: I think for me, it’s definitely doing, like Adrian said doing the things that I love. I really got back into uni as quick as I possibly could. I think everyone was like, “Oh, okay. Sure, off you go.” So I think that was a massive thing for me because becoming a nurse and using this experience to my advantage. And treating people how maybe I realised people need to be treated as a patient in a hospital bed. I have so many notes and tips of do’s and don’ts that I’m like, “Oh, I didn’t enjoy this and I enjoyed when someone was like this with me.” So for me, it was getting back into uni because I didn’t want to delay my course. I wanted to get out and keep going.

Beth: So for me, that really helped me and it still does. Giving structure to some of my days even if I study for three hours in the morning and then I have to nap for another three. It just was a major thing that just keeps me busy, keeps me going. And then obviously family, friends, keeping those people around me that mean the most to me. And they’ve all been amazing throughout my whole journey and still are today and very understanding, especially my friends. So it was definitely just keeping my uni going because I enjoyed it and it’s as simple as that. Like Adrian said, just do things that make you happy because it just makes the journey that much better.

Simone: Thank you so much Beth and to Ade for both of you for coming on this podcast episode, we’re going to wrap it up there. I just want to say thank you again. If you found this episode helpful, please share the episode with your family and friends. Subscribe to the podcast to be notified about future episodes, or leave us a review so more of the stroke community can find us. Thank you again, Beth and Ade for coming on this episode, join us for the next episode coming up, which will be on recovery mindset.

Announcer: That’s all for today’s Young Stroke Podcast. Find out more about Stroke Foundation’s Young Stroke Project by visiting youngstrokeproject.org.au. You can listen to dozens of other podcasts on our stroke recovery website enableme.org.au. StrokeLine’s health professionals provide practical free and confidential advice. Connect with them on EnableMe or call 1800 STROKE that’s 1800 787 653. The advice given here is general in nature. Discuss your situation and needs with your healthcare professionals. The Young Stroke Podcast series is presented by Australia Stroke Foundation and funded by the National Disability Insurance Agency.