Living With Epilepsy

Torie Robinson of Epilepsy Sparks

Advocating for people with epilepsy and increasing epilepsy awareness are passions for Torie Robinson, founder and CEO of Epilepsy Sparks. 

Torie’s lived experience and experience as an advocate and spokesperson gives her great insights in to care needs for people with epilepsy. In this insightful and personal conversation, Kris and Torie talk about the work they do, how they are trying to bridge the gaps in care, and provide tips for parents and carers of those with DEEs.

You can listen to and subscribe to the SCN2A Insights podcast via Apple Podcasts,  Spotify, and Google Podcasts or in your podcast app.

Guest interview:

Torie Robinson is a keynote. speaker and advocate living with epilepsy. Having had both brain surgery for her epilepsy and stints in psychiatric hospitals; Torie provides a gripping, deep insight into the real worlds of disability and both psychiatric and neurological illnesses.

A charismatic and engaging speaker, Torie Robinson employs her personal and professional knowledge and experience of the worlds of epilepsy, mental health, diversity and inclusion, to speak candidly on what it means to be different, how her disabilities (and abilities!) affect her, and how organisations can be both inclusive and save lives.

Torie is also an active advocate for people with epilepsy and is the founder and CEO of Epilepsy Sparks.

Regular Hosts:

Ms Kris Pierce RN MHSc MWellness, is a rare disease advocate and mother to Will who has SCN2A. Kris has held a range of board, project management, advocate and consumer representative roles and has been instrumental in working with local, state and federal governments to secure funding for multi-million dollar projects. Kris is highly skilled in building teams to work together collaboratively and is a co-founder of Genetic Epilepsy Team Australia (GETA) and SCN2A Australia, and a RARE Global Advocacy Leadership Council member.

Follow Kris on LinkedIn or Twitter.

Dr David Cunnington is a sleep physician and father to Will who has SCN2A. He is director of Melbourne Sleep Disorders Centre, and co-founder and contributor to SleepHub. David trained in sleep medicine both in Australia and at Harvard Medical School in the United States. David’s clinical practice covers all areas of sleep medicine and he is actively involved in training health professionals in sleep. David is a regular commentator on sleep, both in traditional and social media.
Follow David’s posts on sleep on Facebook or Twitter
 

Transcript:

Welcome to SCN2A Insights bringing you the latest research and clinical updates on SCN2A and genetic epilepsy from around the world.

Dr. David Cunnington: So welcome to this episode of SCN2A Insights. I’m David Cunnington.

Kris Pierce: And I’m Kris Pierce.

Dr. David Cunnington: And what a great job you did in this episode, Kris, setting up that interview with Torie Robinson.

Kris Pierce: Yeah. Look, Torie is great. We’ve connected over the years and she is real energy amongst the epilepsy community and she brings a lot to the table and a lot to share with her own personal experiences.

Today, we’d like to welcome Torie Robinson to our podcast. Torie and I have met across the waves through the internet and through our shared passion for improving outcomes for people with epilepsy. We both visited each other’s countries but have not actually met face to face but one day we will. And today, we are going to talk to Torie about not only her work in this space but her lived experience of someone that has epilepsy and she is going to talk us through her experiences and also just her experiences might help parents who are raising with epilepsy, which is what we – the space in which we work.

So Torie, can you introduce yourself and let us know what you do.

Torie Robinson: Sure. It’s great to be here. Yeah. So – well, yeah, so my name is Torie. I’m 40 now. I’m CEO and Editor for Epilepsy Sparks, which I founded about four years ago. I’m a public speaker regarding epilepsy and psychiatric comorbidities and other stuff that goes commonly with epilepsy. I’ve got a podcast and a YouTube channel, which new episodes come out every week. And it’s really fun because I get to interview some inspiring people. Our upcoming will be a person called Kris Pierce at some point.

But people including clinicians, geneticists, researchers, as well as carers and patients because epilepsy and all the delightful stuff that comes with it is not just about one point of view. It’s not just about what happens to the patient for instance. It’s also about what happens to moms, dads, and carers. And it’s important to see things from the perspective of medical providers and staff so that we can better people’s lives. And it’s really exciting as well and I get to learn – we will try and learn lots of new [0:02:27] [Indiscernible] and long words.

Currently, I do blog myself. And so, I’ve got like TorieRobinson.com and I get other people from around the world to blog for Epilepsy Sparks.

And gosh, I do have this on the list. But I’m a Governor at South London & Maudsley Trust so it’s a local mental health trust where I was formally a patient I might add. I’m on the Patient Representative – Advisory Panel for the Complex Epilepsy MDT at Kings College. Again, so that I can sort of give a bit of a patient point of view to the clinicians and hopefully bring up things that other people might be maybe a bit nervous to say. For instance, I brought up recently the impact of epilepsy on the sex life of people affected by epilepsies.

I’m on live experience groups for different companies who were developing things to do with epilepsy and epilepsy tech.

I’m a Trustee for Epilepsy Action as well, who has really helped me get through things especially since my brain surgery, which I’ll tell you a bit more about in a minute.

Kris Pierce: You alluded too at the start to a long list of things and I think many people will be grateful for the work that you do and the voice that you give. So do you want to give us some background on your history with epilepsy, what you are happy to share with us?

Torie Robinson: Oh, there’s nothing I would not share really because I just think that it’s really important that people recognize that epilepsy is a – well, whether you want to call it condition or disease, it is something that is not your choice and it’s not something I believe anybody should be ashamed of, and that goes for carers as well as patients.

And so, it’s questionable whether what I’m about to say was, is, or has been relevant to the development, of my epilepsy genesis. But I did have a – or go into [0:04:18] [Indiscernible] when I was little when I was about 10 months old. It lasted about an hour or they say over an hour. So I don’t know. It could be a coincidence. But then I developed certainly epilepsy itself later on.

I remember almost walking into the classroom in my undies when I was about six because of a focal seizure and I hadn’t been diagnosed at this point, right? And anyway, so I got to about 10 years old and then, only then did my parents recognize, “Yeah, she is a bit more weird than normal. Let’s take her to the doctor.” And then I got diagnosed although my EEG showed no abnormalities at all which we know is really common.

As I grew older, my epilepsy became more severe. So rather than [0:04:59] [Indiscernible] as only having focal seizures, I started having secondary generalized tonic-clonic seizures and a number of accidents, falling on the railway line in rush hour, falling off the skis, falling asleep in the snow, lots of different things like that. I was having clusters of seizures.

I had always been open about my epilepsy because I’m lucky I love science and I like to stand up for other people who didn’t have a voice I guess. But I basically went from when I was little to when I was 31 before it was suggested to me, “By the way …” by my amazing neurologist at the time, “… your life expectancy isn’t great. Would you consider surgery?” And I just like laughed. I love this guy. And I said, “Yeah, definitely.” And I’m very lucky that I was suitable for the surgery.

And so, I had temporal lobe resection in 2013. Since then I have had much – well, my number of seizures has gone significantly. I’m still around. I still have seizures but far fewer. So I had like a little focal, very mild, a couple of days ago but I went to lie down and I was absolutely fine. I’m very lucky. So I still take my anti-seizure meds. I wish I could come off them but obviously, I can’t. I’m sure it’s not just a correlation that since my epilepsy has improved so significantly since surgery, that’s when I really started to try and give other people a voice, other people affected by epilepsy. I guess I had a bit more energy. I was less stoked up because my dosage of drugs had gone down. And yeah, I just kind of got frustrated with humans, in general, coming across so many people who have been discriminated against which I hadn’t before honestly because I didn’t know of any epilepsy charities until I had my surgery. It was just outrageous.

And in addition to that, I didn’t know of any rare epilepsies, which I just think is shocking. It’s absolutely shocking and quite disgusting, to be honest.

Kris Pierce: We are working on that. It’s taking time.

Torie Robinson: Indeed.

Kris Pierce: What you’ve just shared with us, to me as a parent of a child with epilepsy, it kind of really got me a little bit, not emotional, but thinking about what our kids go through, it must be very scary for you to have been through that and to know that potentially hopefully with surgery, but there is the potential of seizures to come. And how do you deal with that?

Torie Robinson: You know what I’ve learned is that I consider myself really lucky in that I’ve had seizures almost all my life which just meant that I’ve grown up to the kind of not be so scared about it because it’s kind of normal. You know what I mean? Rather than – like I’ve met people who have developed epilepsy like in their 50s and then they lose everything that they once had like they can’t drive anymore for instance, whereas I never had that anyway.

Kris Pierce: Do you have fear of seizures coming?

Torie Robinson: Yeah, I guess I do. Every – I was talking to somebody about this recently and it’s always in the back of my mind. I never really thought about it but it’s always – like no wonder there’s such a high, high rate of anxiety in both patients. And patients I swear like must be patients even who are nonverbal and their moms and dads because you just never know, right? It’s always there in the back of my mind. I’m worried about it. But I’m again, lucky in that I’ve had support over the past few years from a partner and he is just like, “Dude, you’re tired. Go to bed.” I’m like, “Well, yeah, but I can’t. I can’t because I got to …” No, just try and relax.

And so, post-surgery for instance, I was having a tonic-clonic still once a year. I was having other seizures during the year but this is a way fewer so I classify my surgery as a real success by the way despite that. My expectations were managed.

Since I’ve been able to relax a bit more and get way more sleep, just trying to look after myself, I haven’t had a tonic-clonic in about three and a half years now, which is amazing because I’ve just been trying to relax, again, get that sleep. Like I knew my whole life that, well, I was an adult anyway, that I needed to get enough sleep and try and reduce my stress but it’s not so easily controllable sometimes especially when you have psychiatric comorbidities which is another thing, I think we should maybe talk about. I still worry about it. Yes, I still never know when it’s going to happen. I’m lucky that I get an aura or a focal prior to any secondary generalized tonic-clonic so I do get a little bit of a warning, which I’m very lucky to have.

But you know what? The last time I had a tonic-clonic was after I flew back from Australia. I had a really long trip on the way home, coming back to London and I had stopped for seven hours in the Middle East and I hardly been able to sleep. You know what it’s like when you travel. And then the day after I got back, I was like, “Whoa!” And this focal lasted so long. I have never experienced anything like it and then I went into tonic-clonic but I’m very lucky that’s all it was and I wasn’t in – well, tonic-clonic seizure epilepsy so that’s good. But I’m just like, your body is telling you something, try and look after yourself. Because I’m very aware of the risk of SUDEP and I didn’t know that one when I was younger either. I could die of SUDEP so yeah.

Kris Pierce: I think that’s a big fear of many of our families who are looking after young ones. Like you said, they are nonverbal and so they can’t tell their parents when something is coming. Obviously, many parents are very vigilant in watching their children and have different technologies to monitor but SUDEP is a really big fear amongst many of the rare and genetic epilepsies so it’s something we certainly got to raise more awareness around.

Torie Robinson: You know what? Talking about SUDEP, because I work with SUDEP Action as well actually because I do think it’s outrageous that so many families are not informed about SUDEP. I mean it’s an awful thing kind of to know but imagine if you didn’t know and then your kid died of SUDEP and then you would always blame yourself, “What could I have done?” I think anyway. And loads of people with – I mean my epilepsy is classified as rare epilepsy because it’s refractory despite all the treatments I’ve had. If people don’t know about it, how can they try and minimize their risk, right?

And also, strongly I think that knowledge or learning is empowering. And the more you learn, the more you realized you don’t know, right? But at least learning about different things about the epilepsies rare or not because they are very closely linked, let’s face it, it’s empowering and at least then you can apply that knowledge into fingers crossed, a way to better care for a child.

Kris Pierce: Many of our families as their children get older into sort of older teens, young adults, we are finding that many of them are presenting with psychiatric comorbidities that are very hard to manage. And you mentioned that that was a challenge that you faced.

Torie Robinson: Past tense. I mean I still struggle to be honest. I’ve had psychiatric comorbidities for the majority of my life. How much is down to how I’ve been experiencing fellow homo sapiens, I don’t know their reaction to my disease and how much is potentially down to biology. I really don’t know. But since I’ve been young, I’ve had – I’ve struggled with anxiety and depression and suicidal ideation. And I really wished I had had somebody to talk to when I was little and I just didn’t. And like you’re taught that you just keep it to yourself, mate.

As I got older, things progressively got worse. And again, I wished that I’ve just had somebody who could understand what it’s like to or you know what? You don’t have to understand but empathize and listen. That is huge. Like I’ve got a mate who said to me when I was very ill as in I just come out psych hospital and then I was going to go back in actually, but then she said to me, “Do you know what, mate? I really don’t understand what you’re going through but I’m here for you.” And I just like laughed and I just hugged her and I said, “That’s all we need.”

And it’s the same I think for families. I think it’s really important that we don’t expect necessarily other people to understand but just that they are there for us. And I wished I had had that growing up and as an adult. That would have been amazing. But I was taught to be ashamed of it. When you are ashamed of it, it’s harder to ask for help. And then there’s always that thought that “Oh, well, there are other people out there who got things worse than me so kind of get over it, mate.” Or like we don’t have enough people or professionals who are in psychiatric care or counselors or whatever and other people are going to need it more. At least you’re doing this and that.

And today, although I still struggle with that, trust me, I think we’ve got to say, “Solve that, mate. You have to look after yourself.” And by that, I mean your child and literally yourself because if mom and dad are not well or whoever is caring for you is not well, your kid is going to know if your mom and dad aren’t well. And so, it’s so important for your moms and dads to get the support that they need.

And honestly, do you know what? I said in a government meeting quite recently, if they invest in care for, yeah, kids or however old they might be, adults, and the ones that love them, you are going to have less of a drain on our country’s health sector treatment because we’re going to – although it might be an investment initially, we are going to be in the best state of well-being and the same goes for carers and you can have more moms and dads and sometimes patients as well in employment and we’re going to pay more taxes, mate, and more vote for you. Join me because we are making our lives better.

Kris Pierce: Yeah. Well, I don’t know if I told you but one of the jobs I do is working for Kids to Adults Alliance which is a national network of health researchers in trying to do exactly that with the same impetus that if we can improve outcomes in childhood and set up a better system to support not only them but their families, inclusive of siblings, grandparents. We might transition from adult – from pediatric to adult who would service health services. We are actually going to improve outcomes not only for all those people involved but also for the health economy as well because we are getting better outcomes for those people, which is in turn going to reduce the burden. I don’t like that word but in this instance, it’s fitting.

Torie Robinson: And we need reminding of what you’re doing. Moms, dads, kids need reminding of the amazing work that you are doing and other people who are putting so much in because well, let’s face it, a lot of the time, we are so stressed or depressed or people on these drugs, that we will forget all these good things that have been done and I think it’s really – we need that reminder that we are not forgotten.

Kris Pierce: I think that’s really important. And I think to your point earlier in our conversation that there has kind of been a stigma related to epilepsy and nobody really wants to talk about it and they certainly don’t want to see it in my experience. And I think it has actually been detrimental to getting good health services for our loved ones because people don’t understand. They think it’s just a seizure. And that seizure is not particularly palatable watching someone have a seizure to the general population and I think it’s really something that we’ve got to – we still need to shift that rhetoric around what epilepsy is or what it isn’t.

And the fact that what you and I talked about is it’s not just seizures. It’s so much more than that. For our families, these kids have intellectual disabilities, autism, psychiatric comorbidities, many PEG feeds and wheelchairs and need 24-hour support. And this is what our complex and rare epilepsies look like.

Torie Robinson: And I’m speaking to somebody from [0:17:06] [Indiscernible] UK the other day about how there are these private groups where moms, dads, carers talk about things that their kids do that they are ashamed to talk about in public like smearing feces on the wall. I get it totally but it’s so wrong that our mom and dad should feel ashamed of that. It’s never your fault that that happens. I think that there should be support for families when this happens and support for the child. There’s a reason that these things happen, right? I want to poop myself when I had a seizure. Well, maybe more than once, only one time that I know of. But I talk about it because I’m not ashamed of that. I didn’t do it on purpose.

Kris Pierce: But you’re right. Like it’s things we talk about in secret Facebook groups or other social media channels, we’re in the safety of a small community. But if people don’t know the challenges that we face or the hardships or the needs that our families have, how can we fix them and address them? So I think no matter what it is, whether it’s pooping your pants or it’s behavioral issues, these are the tough conversations that need to be heard in order for us to get better services.

What would you like to advise parents who have got a child with epilepsy whether it’s straightforward, not that any of it is straightforward epilepsy or a more complex epilepsy parent, what would like them to know?

Torie Robinson: I want them to learn more about the epilepsies and let’s explore there. Know that the epilepsies are so diverse in the different types but again, they have so many similarities. And the more you learn, the more you recognize that that is the case. Learn statistics. Know that you’re not alone. God, mate, this happens. It’s so common. I mean there’s the rare ones of course but you know what I mean. It’s so common for a human to have neurological issues, and that’s what epilepsies are.

And also, think – but you go and discriminate or not support your kid or not talk about your child, if your child had diabetes, no, you wouldn’t, right? Yeah, it’s different. I know. But then there is complex diabetes as well. And would you like your child to be feeling more alone and recognized that you are embarrassed about them? Because I swear that that happens a lot, not that anyone would miss it or maybe outside of the groups but it happens for sure.

And I – this is brutal but I do think that people should be a bit ashamed if they don’t learn about it. If they choose to be ashamed of their child or if they choose to – and I think we also need to be able to see things from the point of view of outsiders who are unfamiliar with epilepsy. If we can teach ourselves then we learn how to speak confidently about it to our clinicians, to social services, to mates, etc. and ask for the help that we need.

And I realized that there’s a kind of just like – sounds like some spiels. She doesn’t know what she is talking about. But trust me, mate, I have had this for at least 35 years. I wish somebody had been there for me growing up and been able to support me with this. And I guess that’s kind of why I do what I do. I want other people to know that they’re not alone, as alone as no doubt as so many people feel. But we know that there are so many families that are affected in this way, not in an identical way but a very similar way. Let’s try and put the, “Look at me!” to one side and realize that we can achieve way more by working together.

Kris Pierce: You’re speaking to the converted on that one. It’s probably one of my biggest frustrations working in this space is people not willing to collaborate for whatever reason they come up with. It’s just the most frustrating. To be honest, it really gets me down that comes about – it becomes about ownership, it becomes about ego. And at the end of the day, particularly for our group and families that we are supporting, we are talking about children. We are talking about children’s health. We are talking about children’s lives in many cases. And all that needs to be put aside and we need to surge forward as a collective, collaborative, one voice, stronger together. But it’s not always the case and that’s unfortunate.

But that’s why I love Torie that we’ve connected because in many ways, there are so many things that we can do together and I know just through our connections that many people have reached out to you and vice versa and we are supporting each other’s causes and awareness and even that is a step in the right direction. And I’m certainly grateful for the work that you are doing.

Torie Robinson: Same here. Same here. And you know what? I was having just kind of along those lines, a conversation with somebody just yesterday about how within many groups of people affected by the epilepsies, and by affected I mean the moms and dads too, is that it becomes all about them and it becomes all about their own specific individual goal for their child. And I totally get it.

But we can achieve so much more together and I do think that I’d like to look at the organizations as more like a business. And I mean that in a way that if people are going to be productive, great. Let’s do this work together. We can step into it as a whole and let us create a plan for the mid, long term, the future. These are our goals and these are the parliamentary bodies we are going to be speaking to. These are the da da da da da and so that we can get more care health and education regarding these diseases. Not, “OK, how do we create like a leaflet about this particular rare disease? And that will be great and it’s only important because that’s about my kid.” I empathize. Trust me. I do.

But if that was in a for-profit company, you’ll be sucked, mate, or you will be disciplined because it is not productive. We want to achieve a better quality of life for these people long-term by working together, not by stressing about little things that are all about ego. I think that’s a massive thing.

Kris Pierce: In my experience, that often, many of these issues, for want of a better word, come up because there’s a lack of communication and lack of, you used the word before, empathy. Many of the people working in this space have very sick children. Sometimes you got to give them the space to work through whatever it is in their personal life before they can move forward and do the kind of work that you’re talking about. And there are some amazing people working in the rare and genetic space who are doing amazing things and most of them are extremely collaborative.

One of my key goals is kind of always to keep re-orientating people around particularly in the rare space that it’s global. So what you do in England is going to be applicable at least on some level in Australia. So are you working with those people? The same with the United States, across Europe, and that’s why we make those connections to try and say, “Well, what have you done in this space?” And we don’t need to reinvent the wheel but we might need to adapt.

Torie Robinson: We are all of the same species, right? And let’s not duplicate things unnecessarily. It’s a bit like when you see different labs and different countries and you think – OK, I’m not an expert, but I swear there’s duplicating going on. Let’s collaborate. Let’s achieve more together. Gosh! It’s so cheesy. Let’s achieve more together as one, man.

Kris Pierce: But it is frustrating like for example, you’ve got a group that has done it. You’ve got a natural history study going and instead of utilizing that, another group will set up a different study and call it something different and essentially doing the same work. And it’s a waste of time and resources, and to be honest, it’s a waste of money and it just slows things down. If only that is what I would say. If only.

I wanted to touch on one other thing that you raised early on in our conversation. And that was around consumer engagement, which you know is one of my passions. How do you go from being either someone with an illness or a carer, being a parent or another carer to being that advocate?

Torie Robinson: I made a decision early on that I was going to try, we’ve all got biases, but try not to be too affiliated with a particular body. So for instance with Epilepsy Sparks, I decided this was going to be a separate company and it’s not going to be – I’m going to feature these separate organizations on our website. So it’s almost like a sort of glossary or encyclopedia for different organizations rather than, “I just want to see what’s out there and I want us to be able to work together.” Like you were just saying, let’s not have all these secrets from each other. Let’s work together where we can.

Kris Pierce: I often get – often have other parents who are raising children with these rare and complex epilepsies and say, “I couldn’t do what you do, Kris.” And I’m thinking, well, what is it that I do? I don’t know. I just do it. There’s no – have I made mistakes? Plenty. Every day we make mistakes. But I’m so passionate about improving outcomes for families with rare and complex epilepsies particularly in Australia, if it can be wider than that, fantastic.

I recently had someone asked me what my goals were. And I said, “That’s it. That’s the legacy I want to do.” I want to be able to say at the end of my work that I’ve made this impact. I have been able to agitate enough to get some change, some real change because to be honest, we’ll be 20 at the end of this year and not a lot has changed. Some of my best buddies in this space have got really young kids and they tell me what’s going on and I’m going, “Nothing is different. Things have not changed.” And that ranges from diagnoses to the genetic counseling they get, to the services when they go out – after their diagnoses to transitioning from hospital to home, from hospital to school, from pediatrics to adult care. Like the gap is still significant and I think part of it is because we are too shy in coming forward.

And I guess it’s just interested in if you had any advice about stepping forward into the light to make a difference.

Torie Robinson: I kind of said it before but what gives me I guess the confidence to do it is I’m not doing it for myself. I’m trying to do it for other people who don’t have that voice. And I’m also – I love learning so I mean it takes me longer because I have to read it a million times to try to absorb it. But I just find that really exciting. And my purpose is to bridge that ridiculous, old fashion gap between clinicians, researchers, and patients and families and the rest of the public because I want people to see that even if they are not directly affected by an epilepsy whether it would be rare or not, they are actually affected because it affects, for instance, the economy massively. It’s one of the most expensive diseases to the economy.

We could save so much money if we say to politicians and actually, I said this recently to my local politician, “You will save heaps of money for this borough of London if you invest more in care for carers and kids or adults with epilepsy. And you will better the lives of everybody in your borough and you are going to be able to save, dude. Look at me. Look at the higher income of this part of London, la di-da, darling.”

And I just – and so I think a really important thing is seeing things from the perspective of other people. I’m not sure how – I bit like you, I’m not quite sure how I realized that I have to do that. I first started working with charities after my surgery but I just realized that too many people affected by the epilepsies were pretty unknowledgeable. They didn’t know what they are talking about at all and they still are talking about it as one may have done 10, 20 years ago or even 50 years ago. And I just think, “How on earth can we expect the rest of the world to understand not just what we are going through but what we need and how it will benefit them if we don’t look through the lens of these other people?”

And I think statistics just – they are so powerful. If we can say like this many – like I said to my local [0:29:51] [Indiscernible] like, “OK, look, dude, percentage says that we have this many …” I can’t remember what the numbers were, “… but these many people in our borough affected by epilepsy with the diagnoses. But then you got the carers as well. So add another sort of like huge percentage on that and times it by 3 maybe then you got their siblings that are affected and this is all negatively affecting like for instance potentially them at school. You are having less people working in the workplace effectively achieving their potential. And this is a disease that doesn’t solely slap down the person with the diagnosis.” And it’s not just about the seizures like you was saying before, epilepsies are not about the seizures alone.

Kris Pierce: Yeah.

Torie Robinson: It’s almost like this awful thing kind of on the side sometimes. It depends. Obviously, we have some people who are having 300 or 400 seizures a day and all that type of stuff. So I know things are very different. But isn’t that interesting? That just shows how diverse things are.

Kris Pierce: Thank you genuinely for all the work that you do and just raising awareness, putting it out there, and being open and honest about not only your experience but how this impacts families and people with epilepsy themselves. I think it’s an extremely important story that you’re telling over time and it is making a difference. So I really want to thank you for that.

I want to finish up by asking you one last question because most people listening to our podcast will be parents of children with epilepsy. Have you just got any tips for them in caring for their children?

Torie Robinson: I would say remind your children every day that you love them no matter what’s going on inside their head or their body. Know that your children or the people that you care for are going to generally be aware of how you feel as well whether that’s subconscious or not. So it’s really, really important that you look after yourself too.

I would say ask for help where you can. Imagine it’s someone else that you love who wants you to be well so even if you think that, “Oh, I’m not worthy,” or that somebody else is more important, ask for that help, mate. And don’t just ask for it once. Know that there are always going to be frustrating individuals out there even within these communities who say things that you don’t agree with or who can be negative. I’ve experienced it and don’t be slammed down by them. Know that there are other people out there around the world who are on your side.

I would say that you are not alone in struggling sometimes to understand what your child is going through. They find it difficult to communicate with you for instance. It’s totally understandable. You are thinking, “What on earth is going on in their head?” And again though, I think that that’s a really important reason to reach out.

And I would say, don’t just reach out to other moms and dads and carers. I would say, reach out to your clinicians. And if that person does not provide the support you need, seek another one. I wish that I had done that when I was younger then maybe I wouldn’t have gone two decades with refractory epilepsy without getting the treatment I needed. I should have been only on these drugs for a couple of years before they realized, “Yeah, the others aren’t going to work either. Let’s consider her for surgery.”

Kris Pierce: Just listening to you then actually made me a little bit emotional hearing some of the things that you were saying. So I really appreciate that. And I just also – your energy and your positivity, Torie, are infectious. And as I said, grateful to have connected with you and really appreciate your time today.

Torie Robinson: Likewise. Thank you so much, Kris. Take care.

Dr. David Cunnington: Great job with that interview, Kris. Lots of things came out, just lots of really good information. And she is such a great advocate for epilepsy and people with epilepsy.

Kris Pierce: Yes, she really is. And she speaks to people within the epilepsy field right across all topics related to epilepsy and she really sorts of challenges us to consider the impacts of epilepsy aside or as well as the seizures.

Dr. David Cunnington: And listening to the interview, there are a lot similarities between yourself and Torie. God forbid the day you guys get together in person because that’s going to be an interesting day.

Kris Pierce: Yeah. Well, there is a conference coming up in Europe that potentially COVID will prevent me from going to but yeah, I think there will be a day where Torie and I sit outside of the conference one day and have a pretty good chat.

Dr. David Cunnington: Yeah, absolutely. When you guys join forces, I reckon there’s nothing you guys couldn’t do.

Kris Pierce: She is a really great advocate.

Dr. David Cunnington: So if you’re interested in more information on these topics, you can subscribe to the podcast to let others know in the field that the podcast is available so they can also keep up-to-date.

Kris Pierce: And that can be via any of the podcast apps so via Apple Podcast. Follow us @SCN2AAustralia via social media feeds on Facebook or Twitter. And yeah, thanks a lot for joining us.

Dr. David Cunnington: Thanks a lot.

This podcast is not intended as a substitute for your own independent health professional’s advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider within your country or place of residency with any questions you may have regarding a medical condition.