Podcast: Stroke – a mother and daughter's story
Transcript
Zoe McDonald: Stroke. It's one of the most well-known neurological disorders in the world and one of the deadliest. In Australia, over 50,000 Australians suffer a stroke every year. However, actually having the stroke is only a tiny part of a much larger picture. A stroke is an event which can haunt the remainder of a person's life, whether that be five years or fifty. To put this in perspective, around 470,000 Australians are currently living with the effects of stroke. However, this number doesn't include the countless friends and loved ones left damaged by the aftermath of stroke. A number which, unfortunately. I can count myself in. At 31 years old, my mother suffered a stroke, which happened in an instant, but whose effect will span her entire life. She is now a stroke researcher here at QBI and will be talking with us today about stroke and its effects on the people around it. My name's Zoe and I'm your guest host for this special edition of ‘A Grey Matter’.
Hi Mum, or should I call you Dr. Codd?
Dr. Lavinia Codd: Took me a long time to get that PhD; you can call me Dr. Codd.
Zoe McDonald: So, stroke. It's not something that you would expect. being 31 years old and a young mother of two; what was your immediate reaction when you were told that you'd had a stroke?
Dr. Lavinia Codd: Well, from what I remember, I mean I was in a lot of pain at the time, so I was probably a little bit more concerned about the immediate pain that I was experiencing and then once you sort of take it all on board that you know the doctors have left the room and you think about what they've said – and I knew what a stroke was. I knew then that that meant part of my brain had died. It's sort of disbelief because you still feel like you that part of what makes you, you, is dead. So, there's a feeling of disconnect and then there's fear because I was terrified because they couldn't tell me why I had a stroke. You know was I going to have another one? And, just not… not really being sure of what was going to come after this. What would happen? What would my deficit be? How would we tackle it as a family? How would I look after you two kids? You know, lots of thoughts go through your head.
Zoe McDonald: So, how do you think that has impacted us, as a family?
Dr. Lavinia Codd: Well, it's so pervasive. It's sort of it seems to come up all the time and you know, me working in this profession probably doesn't help because my work is involved intimately with stroke. It's what I researched. I talk about it home a lot. We talk about it a lot. You are involved with the Stroke Board and fundraising, so it's sort of this ever-present thing in our lives that we can’t ever really escape. I'm not saying I need to escape it, but it's yeah… it's pretty dominant force in our lives I think.
Zoe McDonald: Has working in neuroscience being helpful in dealing with the stroke or has it been more frustrating being constantly surrounded by it?
Dr. Lavinia Codd: There are definitely times when I've wondered why I've done this to myself because I can never escape stroke. It's always there. It's always a constant reminder that I've had a stroke, and because I've recovered so well, I sometimes think if I’d gone into a totally different profession, would I have just left it behind by now? But, the other side to that is that because I'm studying stroke and because I'm involved in raising awareness about stroke, I feel in some respects, like I'm getting a measure of control. So instead of stroke controlling me, I'm getting to control stroke a little bit and force it to do my will, as opposed to being a victim. So, I'm enjoying that aspect and that sense of control.
So, what was it like growing up with a mother with a dodgy memory?
Zoe McDonald: Because I was so young when you had the stroke, I guess it's all I've ever known really. So, there hasn't been a time where I haven't had a mother with a dodgy memory, really.
Dr. Lavinia Codd: But, do you think it's changed our relationship? Do you think we would have had a different relationship or is that just too hard a question?
Zoe McDonald: Oh, I mean I can't know obviously, but I think possibly in a way it's maybe made us closer because when you do have those moments where you struggle or your deficits may come out, I have to help you I guess and then that reliance on me maybe has brought us closer in a way because I have to be that. I can't get annoyed at you and say: “Mum, just figure it out”; because that's a really mean thing to do. So, I think that has probably brought us closer. It's not nice, but I guess that you seek my help sometimes because as a daughter, I'm always leaning on you, so to have you lean on me sometimes, it's a good way to strengthen our relationship a bit.
Dr. Lavinia Codd: And, I really like your involvement with the Stroke Board. I think that's been a positive thing that you and I have experienced. I've actually really like you being involved in that because it doesn't feel so selfish then and it feels inclusive and I've just enjoyed our interaction. So, I think you know, that's probably changed our relationship a little bit because that's not a normal thing for a mother and daughter, especially somebody your age – you know you're only eighteen – so it's that's been an interesting thing for you to be involved in; and I love watching how responsible you are and how you interact with everyone else on the Board and how invested you have become in my quest; that means a lot to me. So, I think that's been really good.
Zoe McDonald: What was the hardest challenge that you faced after the stroke?
Dr. Lavinia Codd: Well, that changes over time, so at the time of the stroke, it was just dealing with the deficits that I had. So, my memory and my navigation, they were the worst things and also not being able to drive for the first twelve months. The ongoing hardest challenge that I've had to face though, is probably problems with self-confidence. I think when you’ve been a fairly intelligent person, you’re used to things going right for you, when that's taken away in an instant and you get lost and you're not in your own home and you can't remember things or people or places, and you’re not totally sure what's going on all of the time - tou lose your connection with reality; you lose your self-confidence. And that has probably carried on for my whole life since the stroke you know. People probably look at me and think that I'm fairly self-confident, and I can be so confident, but I think there's always this underlying current of what will I do? What mistake will I make this time?
Zoe McDonald: So, have you seen an improvement though in your confidence since the stroke?
Dr. Lavinia Codd: As I've taken on greater responsibilities at work and as my results from my research have come in and I can see that I'm getting somewhere, the confidence is better there as well, but there's always still the fear that things will go wrong.
Zoe McDonald: So, what's an example of where you've had that moment and you forgotten something important or you've gotten lost getting somewhere important?
Dr. Lavinia Codd: We have group meetings every week and somebody different presents each week and sometimes we do journal clubs and I did a journal club once and then you know the next week my boss was talking about that particular journal and I had no idea what he was talking about and it took quite a little bit of the conversation for it finally to sink in and that's a little scary. So, that then in turn feeds into the loss of self-confidence, so it's sort of this cycle.
Zoe McDonald: You always talk to me about how people who have had strokes to do with speech, they lose a speech or their movement is impaired. You always talked about how there is occupational therapy post-stroke for recovery for them but you really struggled to find anyone who could help you because you didn't have those same impairments. So, how did you deal with that?
Dr. Lavinia Codd: You know that was pretty tricky. I think, you know, I really, really wanted to be proactive my own recovery and I did get help from a neuropsychologist, who was wonderful. He helped me deal with my anger issues that I had after the stroke because I was a fairly grumpy person. And it was really after he tested me and you know looked at my I.Q. and did a little cognitive testing and he actually suggested that I go back to university to finish the science degree that I was doing when I had the stroke and the way he put it he said I'd be challenging the very parts of my brain that had been damaged with the stroke and that's exactly right. So, it was a sort of… it was an easy choice in the end, once he'd convinced me that I'd be smart enough to return and I'd gotten over the lack of self-confidence. It was… it was the best thing. It did challenge those parts of my brain. I was forcing myself to memorise things and I learned things by rote over and over and over and it was during the course of that you know, rote learning that other aspects - you know part of my navigation did improve. So, I'm sure I think you know it had some… some of the learning that I was doing just in terms of say a chemistry subject did have a generalising effect on improving all the aspects of my deficits that had arisen from the stroke. You know it was pretty good from that point of view. I think it was the best sort of therapy that I could have had.
Zoe McDonald: So, what do you think about the recovery plateau?
Dr. Lavinia Codd: So, this is the plateau where a lot of strokes survivors are told that they’ll recover gradually for the first year or two after a stroke and then they'll plateau and there won't be much recovery after that time. But I just personally have not found that to be my own experience. It may be so for motor deficits. I don't know because I haven't had motor deficits and maybe that's what happens when you having physiotherapy. But in terms of my deficits, so for the cognition so the learning and memory and the navigation, whilst the recovery has slowed down a little bit what has… it has slowed down a lot. It hasn't ever stopped. So, I still notice changes. Sixteen years now since my stroke and I still notice improvements and I don't see why they should stop, and I really personally fully plan on recovering for the rest of my life.
Zoe McDonald: Because I've seen you recover over my lifetime, it's been interesting for me. I guess seeing you when you were younger and at parent-teacher interviews you’d often forget teacher’s names and I have to remind you. While that was still happening in high school, I don't think it was to the same degree and the same with navigation and driving. I feel like you're a lot more confident now than you were when I was younger with driving and while there's obviously still that I guess fear sometimes when you're driving and you get lost, it's definitely not the same as when I was younger and closer to when you had the stroke.
Dr. Lavinia Codd: No, definitely you know, I agree with that.
Zoe McDonald: What's people's initial reaction when you tell them that you've had a stroke? Because from the outside you wouldn't necessarily look at you and think, “Wow! She's had a stroke.” It's all things that you see a little bit over a long period of time.
Dr. Lavinia Codd: Sure! Well, it's usually the first thing is: “Gee! You're young to have a stroke.” Although, a third of all stroke survivors in Australia are actually under the age of sixty five and then it's almost always you don't look like you've had a stroke and then I have to have the conversation about all stroke deficits a difference, so depending on what part of your brain is being damaged will determine what deficits you have. So, I’ve damaged the parts of my brain involved in learning, memory, navigation and sight. I haven't damaged the parts my brain involved in motor function and speech. So, there is no way anyone would be able to tell from the outside looking at me that I've had a stroke. Often when I do public talks now, I actually show my brain scan, just because it's interesting for people to see that somebody can have actually quite a large hole in their head and look perfectly fine.
Zoe McDonald: Why do you resist telling people? Is that you don't want people to treat you differently because they think that you've had a stroke?
Dr. Lavinia Codd: No, definitely. I mean I didn't want people to look at me as if I was different and because you can't tell like from the outside that I've had a stroke. It was easy to get away with that and I didn't want to be perceived as not being intelligent, a core characteristic of mine I guess something that I've always felt confident in was my intelligence and having that stripped away instantaneously, as I said, knocked around my self-confidence and I just didn't like the thought that people would look at me and not think I was smart; that killed me a little bit.
Zoe McDonald: The big question, do you wish that it never happened?
Dr. Lavinia Codd: Yes! I wish it didn't…that it never happened. I don't… Even looking for the positives out of the whole thing - I know I'm meant to be Zen and say: Oh! I'm you know, whilst I thought I was being tested in that was it was good to be tested, I didn't really need to be tested. I'm doing what I'm doing because I like it. I'm studying what I'm studying because I like it and because I think I can make a difference. I don't think I needed the impetus of the stroke to get me to do that. I would have done it anyway. I wouldn’t have done it in stroke. I would have done it in plant biology but I would have been a researcher anyway because this is what I was aiming for and I loved what I was doing.
The fact that I now study stroke is you know it's selfish because they can't tell me why I had a stroke and I might have another one and I want to be able to fix myself. The ultimate aim was always been to fix myself and in the process if I can fix other people, that's great. Whilst it has pushed me in the direction of stroke, it hasn't changed the fact that I would have been a researcher.
So, what about you Zoe I cannot bring myself to see a silver lining with the stroke. I just can't do that emotionally. Do you see a silver lining?
Zoe McDonald: Yeah! I mean I think because I'm a little more removed from it than you are, I do see some positives. I mean there's obviously a lot of negatives that I see and probably a lot of other people don’t because I live with you, but positives in your work and like creating the Stroke Board and doing all this incredible fundraising for stroke research. Not only are you finding hopefully a cure or treatment for yourself, but also for the millions of other people all over the world, who have stroke. I think it’s brave of you to talk about it so openly because it's a very personal thing that you went through and there's a lot of personal stories.
Dr. Lavinia Codd: Well, thanks! That’s lovely to hear.
Zoe McDonald: So, you were a young mom when you had the stroke. I was about two-years-old I think; my brother Sam, was eleven months. So, what was it like dealing with the stress of being a young mom on top of the fact that you just had a stroke?
Dr. Lavinia Codd: Well, soon after the stroke I really wasn't behaving like a mother. I wasn't left alone with you guys for a while because I couldn't remember how to do anything. Sam was still in nappies and that was a bit too much to ask of me at the time. So, in the beginning, I wasn't really mothering you guys and my own mother - she didn't move in with us but she did spend a lot of time with us and we spent a lot of time at her place; and she really probably took on a lot of the mothering role, which was great, but also when I finally started getting better then gave me something to be jealous of. So, that was a little confronting when I finally got better and became more myself and realised what was going on and then I felt perhaps I'd stepped too far back and was missing out. So, that was an interesting effect on my role as a mother. Part of me is really quite glad that you were so young when I had it because you've only known me with this stroke. My personality with the stroke and, for me, personally when I had the stroke, I felt like I became a totally different person. I felt like the person that I had been before had actually died and I was a new person and it took many, many years for that feeling to go away. So, I mean, your father's always been fine with it, but I wonder as a young… if you'd been a teenage child, would you have felt that personality change and would it have impacted on you seeing your mother have a changed identities. So, in some respects it was probably good that you were so young.
Zoe McDonald: Well, I think because I was older I never really stopped thinking of you as Mum because you've been there for long enough that it was kind of cemented in my mind that that's mum, but I think because Sam was so young when Grandma came in that maybe confused him I guess and he was like; “Wait! Is this my mum or is this my mum?” Because he was so young and I think that would have been really difficult and I've seen you struggle over that… that he got really confused when he was younger about who was the mother figure and that would be quite upsetting, I imagine.
Dr. Lavinia Codd: Yeah, it's funny. When we have spoken about this before and it was upsetting, especially you know there was that time when he hurt himself and you know he fell over and he was crying and then I put my arms out and instead of running to me he ran to my mother. And that… that's a story that we talked about quite a bit because it was so confronting. But hand in hand with that I guess is also a feeling of relief that he did have someone to run to, so I was very lucky having this this big, extended family that could step in and hope. So, you know children can be opportunistic and he was young and so he was a bit… it was a bit easier for him to transfer some of his affection, and part of me is glad of that because it meant that he never felt unloved. But yes, I'll probably always feel a little bit sad about that story because we talked about it so often. It's really cemented in my head, but you know I was very lucky having my parents as well as all my siblings; my sisters and brother were very heavily involved in my recovery. One of my sisters had additional car seats put on her car, so she could drive her two kids and my two kids as well as us around and yeah, taking me to appointments and things like that. So, everyone was very involved. So, I was really lucky and I had this fantastic husband who took over all of the home duties. And you had started kindergarten and he would actually go to work early, get a few hours done and then come back to pick you up, to drop you at Kindy and then go back to work, so all in peak-hour traffic, so he was a bit of a Superman in all of this. So, I was very lucky to have these people in my life.
Zoe McDonald: We've just gone downstairs to the lab at QBI, where Mum does her work, so Mum can you tell us a little bit about your research?
Dr. Lavinia Codd: So, I'm particularly interested in memory following stroke, because cognitive deficits, all problems with forming new memories are very common in stroke survivors, regardless of what other deficits you have. So, even if somebody doesn't have direct hippocampal damage like I have, the hippocampus is really involved; it's critically involved in learning and memory. Even if you haven't damaged that part of your brain, stroke survivors will often experience atrophy or a shrinkage of that part of the brain and in the hemisphere in the side of the brain in which they had the stroke. And they’ll also have some learning and memory difficulties. Because that’s so common we really wanted to research this in more depth. Also, interestingly, the hippocampus is one of the parts of the brain when new neurons are formed continuously throughout our entire lives and this is a process called ‘neurogenesis’. So, new cells you know the stem cells in the hippocampus divide and produce new cells that mature and differentiate into neurons and then integrate into the preexisting circuitry and this is an active process that goes on for around our entire lives and it's necessary in the memory formation process. This rate of neurogenesis, though, isn't static and it can be changed by a lot of things and so we're looking at ways of stimulating the production of these new brain cells and the impact that this has on learning and memory. And in my case, I'm examining that following a stroke and other members of our lab are examining that in terms of the ageing brain as well as with depression.
Zoe McDonald: So, what's, I guess from your perspective, the biggest thing that you've learned within your research?
Dr. Lavinia Codd: That in the particular model that we're using, that recovery is possible. Of course, you know, we're using a very defined version of a stroke, so it won't generalise to everything and we are using an animal model. Again how far this generalises into a human translational situation is open for debate, but the fact that I can see recovery in animals that have had a stroke and then we've stimulated the production of new brain cells is really encouraging. How far if we can take it, I don't know, but it's really exciting that just taking this one narrow view that the brain is capable of change it's really a plastic organ and that we can impact on recovery in cognition following stroke is very exciting.
Zoe McDonald: That was Dr. Lavinia Codd, speaking to us about her personal journey with stroke. That's all for this week's episode of ‘A Grey Matter.’ If you would like to find out more about stroke research here at QBI or make a donation, please visit qbi.uq.edu.au/stroke. I'm your guest host Zoe McDonald, journalist and university student at the University of Queensland and our podcast is produced by Jessica McGaw. If you enjoyed this episode, let us know on Twitter or Facebook. Tell your friends or you can give us the review on iTunes. Thanks for listening.
