Episode 2, 29 October 2020 (Duration: 23:05)
Guests: Paul Fink and Nicole Christodoulou
This episode explores recovery mindset. The word recovery means different things to different people. We know that for most, recovery after stroke is lifelong. It’s a journey, rather than a destination.
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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 and 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 second episode in the recovery series of the Young Stroke Podcast. Today on the podcast, we’re going to explore recovery mindset. The word recovery means different things to different people. We know that for most of you, recovery after stroke is lifelong. It’s a journey rather than a destination. Joining me on the podcast today are two phenomenal human beings. Nicole Christodoulou, a determined high school teacher, football mad, lover of life from New South Wales. And Paul Fink, a busy father of two, proud husband, sports mad, public speaker from Victoria. Welcome Nicole and Paul. It’s fantastic to have you on the podcast.
Paul: Thank you very much.
Nicole: Thank you, Simone.
Simone: Now, Nicole. Pardon the pun. But could you kick off the episode by sharing your stroke story?
Nicole: Yeah, sure. When I was 21, I had two strokes in my sleep. That meant that I spent 10 weeks in hospital. I had to learn to walk again. I had to learn to do everything again because if you were to draw a line right down the middle of my body, everything on the left-hand side was affected. It was all paralyzed. So I spent the 10 weeks in hospital learning to do everything again, writing, reading, walking, using cutlery to feed myself, everything.
Simone: And what are the main stroke impacts that you experience today?
Nicole: I’ve recovered so much, but I’ve been left with, when I run for a little bit too long, my left leg gets fatigued and it just slows down and it gets weak and uncoordinated. My short-term memory isn’t the same. I used to have elephant memory pre-stroke. So I would remember everything. But now somethings just leave my brain, they don’t stay in there. So frustrating to deal with, but I can’t complain.
Simone: And how many years after your stroke are you now?
Nicole: So now I am six and a half years after my stroke.
Simone: Yeah. Thanks for sharing that, Nicole. And Paul, do you mind telling us a little bit about your stroke story?
Paul: I was 34 years old. I had a AVM hemorrhage stroke. Previously, I was pretty fit and healthy, living an sporty life, I guess. Married and my son was born seven months before my stroke. And I was working full time with computers or IT. So with no warning sign at all, I had a shocking headache and I was in an altered conscious state. Luckily I was home and my wife called the ambulance. After 30 minutes, I passed out. I woke up two weeks in a coma, including three brain surgeries, but I was unable to speak and move. And I stayed in hospital for six months.
Simone: Yeah. Wow. How many years now since your stroke?
Paul: Coming up seven.
Simone: And what are the main impacts that you would say affect you now after your stroke today?
Paul: My impacting of my stroke was pretty significant, mainly with my speech and movement. I have aphasia and right side paralyzed. And few hidden disabilities, like epilepsy and fatigue. Yeah.
Simone: Yeah. Thanks for sharing that. Now I’m really keen to find out a little bit around how important goal setting’s been in your recovery journey.
Paul: Yeah. Goal setting was a little bit difficult in the beginning, but very important, obviously. Being a relatively inexperienced father, I was sometimes too hard to plan because I was living in the moment and trying to be busy all the time. So, short-term goals were more useful, especially in the early stages, but also important to never lose sight of the long-term goals also. My goals will center around my family and try to be more independent, I guess.
Simone: And Nicole, how important has having something to work towards been for you?
Nicole: Having goals to work towards for me were very useful, they were very important because they gave me a clear vision. So when the physio came for the first time to my room in the hospital, they asked me what my goal was. I said, “I want to be able to play soccer again.” And the first thing I had to do was to learn, to stand up. Following on from that, I had to learn to walk. And then the last thing I learned to do was run.
Nicole: I asked my physio one day, when I was towards the end of my hospital stay, if I could run. And she put on a Pelican belt for me and she was holding me. And she put the speed up on the treadmill and she goes to me, “Okay, run.” So I started running, but then my left leg was fatiguing. Little by little, with more practice, I got to playing soccer.
Nicole: At the end of the gym sessions at 4:30, when I was in the hospital, after the patients went to back to their rooms, I was allowed to kick the ball around. So that was working towards my goal as well. Also, one of my goals was going back into uni to finish off my teaching degree because I was in my last year of my degree when my stroke happened. So that’s been very important. Getting the support that I need to work towards where I wanted to end up, really helped. And it worked.
Simone: And so, obviously, you’ve overcome so much in your recovery and had a lot of breaking down bigger goals into smaller steps. Paul, I know you’ve described yourself as an introverted person before your stroke, having aphasia and being a naturally more reserved person, what has led you to public speaking?
Paul: That’s true. I was pretty softly spoken guy, but was very social also. I guess I was not ready to work, I guess full-time anyway. But also, it was good opportunity to search for something else, especially always keen to helping people. And lots of benefits, public speaking, I guess with me. For example, with any conversation, including this one, is amazing therapy with me. Also, is pretty satisfying feeling, making a difference also with people’s lives.
Simone: Fantastic. Nicole, I believe you were told that you would never work full-time again. And you’re now a full-time high school teacher. How did that affect you being told that? And how did you overcome the odds or perhaps those kinds of comments?
Nicole: Yeah. So that comment from my doctor really upset me. So the next day, my auntie took me to her school. She’s a primary school teacher and I volunteered there for two hours. And I came back home and I was so tired and I went to bed. Anyways, I did that for one term, 10 weeks. The following year, when the year started back again, I asked my boss and I said, “Can I stay the whole day? I want to see how I go.” And she said, “Yeah, that’s fine.” So I stayed, I volunteered. And I kept volunteering for a whole year to prove to everyone that I can do it.
Nicole: The reason what I mean when I say that, if you expose yourself to these things, little by little, your body builds resistance to it and it gets used to it. And then you get better at it. So I basically owe this volunteering experience in a primary school, everything. Because this is the reason why I’m able to work now in a high school and do my job. This is why I can last a whole day without feeling fatigued. That fatigue, it used to really knock me out for a good four hours. But I don’t feel that anymore. It’s all gone.
Simone: And you’ve built your way up to full-time hours. And what I’m hearing is, really, being open to using volunteering as an avenue to get to where you want to go. I think that’s really powerful for people to hear, that maybe not having these expectations that you’ll get back to full-time work straight away and that there’s a different pathway. It might look different to how you imagine, but it sounds like you weren’t willing to take no for an answer. You were like, “I’ll find a way to make it happen.”
Nicole: Don’t get me wrong. It wasn’t easy. It was hard work. It didn’t happen overnight. It took a few years, but I’m happy. I’m so happy. You don’t understand how grateful I am that I’ve got a second chance to do what I love because I love what I do.
Simone: Fantastic. And this question is for both of you. I’d love to know what motivates you. You’ve probably given glimpses of what your motivation is. But Paul, I’m going to go across to you. Could you share what motivates you? What keeps you on a day-to-day basis?
Paul: I’m pretty self-motivation anyway. But my motivation is my kids and my family, and trying to be as independent as possible. And be a good father and not be a burden for my family.
Simone: Yeah. And Nicole, what motivates you?
Nicole: Back a few years ago, three years ago, I did a few sessions with a neuropsychologist. And they showed us this video on what happens in your brain when you make a new neural connection. And that to me, made the world of a difference. What happens is that, when your brain forms a new connection or when you’re learning a new skill, these two lines just join up. The more you practice this skill, the stronger and the bigger this connection gets. And that just made me feel like, wow, the brains an amazing thing. I’m just going to keep doing what I’m doing. And I just get better and better and better at it. I’m a very, very determined person. So tell me, “No,” I say, “Yes, I’m going to prove you wrong.” And the last thing is that we’ve only got one life. So, just make the most of it now that you’re here, because we’re still here for a reason.
Simone: We know that finding the right support crew in stroke recovery seems to be key. That could be a team of therapists or cheerleaders, that might be your family and friends or other companions or peers. Paul, I’m keen to know who are the key players in your recovery team six years on?
Paul: My therapists, my wife, definitely, my family, my friends, and I guess my community. And my community who are always and together and supporting me every step of the way after my stroke. If not this support, I will be far worse this stage in my recovery.
Simone: So really important to have that key support crew. And Nicole, I think that you would probably agree. Do you have anyone else in your team or your support crew, so to speak?
Nicole: I agree with Paul. My family, they’ve been with me throughout my experiences in hospital. They’ve taken me to every single therapy under the sun. I’ve had people at university and at work to support me. And that believe in me and my abilities and that see through the stroke. And they honestly, I think of them as angels. They’re God send. And they’re here to support me and to keep me going.
Simone: And I’d to touch on this word plateau because it comes up a little bit in the stroke community. Nicole, what advice would you give to someone who might be experiencing significant gains in their early rehabilitation stage, but then maybe over time starts to see less obvious changes to them as time goes on?
Nicole: So, my doctors told me that I had one year worth of recovery. That is not true. Especially with us being young stroke survivors. I think what the doctors or most of the medical practitioners tell us, are based on what they have learned at university or the statistics they know. That it’s based on older people because mostly older people have a stroke. But we all know that younger people can have it too. I’ve been recovering for the last six and a half years. And I still feel like I’m still recovering. I would write in a notebook every year on the anniversary of my stroke, the different things that I’ve achieved that year. It’s insane. I’ve done so many things, I’ve achieved so much. Yeah. Plateau, that word, just don’t let it get you down because it doesn’t stop at the end of the time the doctors give you. So, you just keep improving.
Simone: And again, coming back to having that really good support crew as well to keep you going. And Nicole, I’m really curious, because you’re a ball of energy. You’re full of energy and full of life. Do you ever lack motivation or have days where you feel a little less motivated, not as focused? How do you overcome this?
Nicole: Most of the days I’m super motivated, but when someone puts me down, it does put me down. But then again, what I think of is that the only person that’s going to make myself happy is me. I just think to myself, “Is that how I want to live? Do I want to listen to what these people were telling me? Or do I want to go ahead and live life to my fullest?” I think that having experienced a stroke, it changes the way you think about things. If I didn’t have the stroke, I wouldn’t have been so… I don’t know. I think I would have had the different view of life.
Simone: Yeah, absolutely. So really, almost the stroke has shifted your way of thinking or looking or seeing the world. Paul, I’m curious to know, how do you decide what you keep working hard at or what you focus on? Where do you decide where to focus your energy and maybe what you’re willing to let go of or accept at different points?
Paul: I think acceptance is almost second nature with me. Mainly because the stroke was so quick. And the positive of that, I can’t remember the acute stages as much, so I’m not really traumatized. But also, I’m pretty practical person and I focus on the things I can control, not can’t. Yeah.
Simone: And what I really, really like about both of your stories is this ability to focus on the possibilities and opportunities rather than potential difficulties or limitations is what I’m really hearing from both of you. It’s your chance now to share what has helped you along the way? So, what are your top recovery mindset tips? Paul, I’m going to start with you.
Paul: I guess positivity is very important with me. Also open-minded attitude. And maybe also trying to be less self-conscious and comfortable in your skin. Yeah.
Simone: Fantastic tips.
Paul: Thank you.
Simone: Nicole, what are your top tips? Your recovery mindset tips?
Nicole: I agree with Paul. Being positive really, really helped a lot. Seeing all the different changes that were happening really, really excited me and I was just getting so happy. Be happy that you’re still here.. Focus on the things you can do and you’re able to do you’re still here with your family. Life’s amazing. Just don’t give up. Never, ever give up.
Simone: I’m going to wrap this episode up with one last question for you both. Paul, how do you live a good life after stroke?
Paul: I think being healthy, exercising regularly, continuing with strong connection with your family and friends. And also being active and using your brain a lot.
Simone: Fantastic. And so, Nicole, to finish up, how do you live a good life?
Nicole: So after my stroke, I thought to myself, “I’m just going to go ahead and do everything I love to do. Because one day I may not be able to do it. We’re only here once.” And since the stroke, I have achieved so many things. I have gone, I’ve traveled to so many countries. I have learned to play an instrument that I was told I shouldn’t be able to learn to play. I’m playing soccer for Australia soon. Hopefully next year it happens. I finished off my degree as a teacher. I have done some work with UNESCO. And my embroidery has been on display in France and in Cyprus overseas.
Now, all these things have happened because of my stroke. If I didn’t have it, I wouldn’t have done any of this stuff. I wouldn’t have achieved anything. The view on my life has changed because of the stroke. And I just go ahead and do everything I want to do. Not what everyone else wants me to do. So, that’s how I live a good life.
Simone: So really focusing on what’s important, what lights you up.
Simone: Amazing. Thank you so much, Nicole Christodoulou and Paul Fink, for being on the podcast today. You can find out more about Paul, including his recovery journey and survivor tips over at iampaulfink.com.au. The next episode in this series is finding the new normal after stroke. Be sure to listen in for more tips from your fellow stroke survivors. If you found this episode helpful, subscribe to the podcast and you’ll be notified about future episodes. Share the episode with your family and friends. And please leave us a review so more of the stroke community can find us. Thank you again to Nicole and Paul for being on the show.
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. StrokeLines 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 health care professionals. The Young Stroke Podcast series is presented by Australia’s Stroke Foundation and funded by the National Disability Insurance Agency.