Supporting Brain Injury Survivors with Jenny Clarke
Show Notes:
What if there was a way to truly support and understand the long-term challenges faced by young adults who have suffered from brain injuries? Join us as we welcome Jenny Clarke, co-founder of SameYou, a nonprofit organization that focuses on mental health and emotional recovery for brain injury survivors.
Jenny shares her personal experience with her daughter Emilia's brain injuries and how it led them to create Same You, with a mission to advocate for better recovery and rehabilitation services for those affected.
We explore the hurdles faced by people living with brain injuries, delving into the importance of mental health support. Jenny discusses how SameYou is striving to make a difference in the world of all brain injuries. We also touch upon the challenges of explaining the long-term effects of brain injuries to people who don't understand them, and the need for increased public awareness.
Learn more about the SameYou campaign: sameyou.org
Find the 33 Steps to Brain Injury Recovery Resources here: https://www.sameyou.org/resources
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Bella Paige
Host
00:00
Hi everyone. I'm your host, Bella Paige, and after suffering from post-concussion syndrome for years, it was time to do something about it. So welcome to The Post-Concussion Podcast, where we dig deep into life when it doesn't go back to normal. Be sure to share the podcast and join our support network, concussion Connect. Let's make this invisible injury become visible.
00:25
The Post-Concussion Podcast is strictly an information podcast about concussions and post-concussion syndrome. It does not provide nor substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you've heard on this podcast. The opinions expressed in this podcast are simply intended to spark discussion about concussions and post-concussion syndrome. Do you feel constantly overwhelmed by your concussion symptoms and life changes? This is where Wombat. WOMBAT can help you, a new breathwork and somatic therapy app powered by neuroscience. Let's slow down those racing thoughts and give ourselves the ability to breathe. Wombat is designed with an understanding of the impact of trauma on individuals, ensuring a safe and supportive environment for users dealing with stress, anxiety or post-traumatic experiences. Go to their website today at hellowombatcom.
01:35
Welcome to episode number 105 of the Post-Concussion Podcast with myself, belle Page and today's guest, Jenny Clarke. Jenny, together with her daughter, Emilia, are the founders of the charitable organization SameYou, a nonprofit that supports young adults who have suffered from brain injuries, including stroke. We are sharing this episode in honor of their current fundraising campaign, 33 Steps to Brain Injury Recovery. Their vision is to transform the way brain injury survivors and their loved ones are supported through emotional, mental health and cognitive recovery services. Did you know that one in three individuals suffer from a brain injury that's 33% of the population. Don't miss out on Jenny's experience in the brain injury world and be sure to check out the 33 Steps to Recovery campaign by SameYou. Welcome to the show, jenny.
Jenny Clarke
Guest
02:23
Thank you so much. It's a pleasure and a delight to be here.
Bella Paige
Host
02:27
So, to start, do you want to kind of tell us about what instilled you into starting SameYou, what happened in your life?
Jenny Clarke
Guest
02:37
Yes, absolutely Well. As with everybody else, what happened in our lives was a complete shock, a huge, catastrophic experience. In 2011, my daughter Emilia was filming Game of Thrones the first season, and she had her first brain hemorrhage, so we felt that this was something that we had no experience of. We didn't expect it.
03:02
2013 came around after she had recovered pretty much completely, apart from fatigue, and, as I'm sure you know and everybody else knows, once you've had a brain injury, you're not exactly the same again, but you really try to be. So in 2013, she had a preventative surgery in the States and it went very badly wrong, and so, instead of a very simple procedure, it was huge an open-head surgeon. So those two things together because of her aneurysms that we didn't know existed, led us into a completely new world, and because she has a platform, we felt that there could be something that she could do to push forward the cause for people to demand better, and the demanding better that we saw was so important was demanding better recovery and rehabilitation services. So that's simply why we started.
Bella Paige
Host
04:03
Yeah, i think that's absolutely wonderful. Not the brain injury part, but what led you to start seeing you? I think it's incredible how people always kind of end up on their journeys For me. People are always like How did you get here? And I'm like that's actually a really long story And it's actually kind of really tragic in one way. But in other ways it's benefited so many people in a different way, as I get to help people each day with all of this. And so what same you is all about? you've kind of mentioned the rehab part, but you kind of want to talk about what same you does and how it helps people. Yes, of course.
Jenny Clarke
Guest
04:44
So we took quite a long time familiar to feel strong enough to be able to tell a story in public because there's obviously so much interest. So, without going into that background, we have talked about it on our site, on our videos, before We launched in 2019, which, in retrospect, was a pretty rubbish time to launch because the pandemic hit pretty much straight away.
05:08
And it showed that we weren't perhaps as organised as we might have been, but what Emilia had been doing before the launch was to raise money and raise some funds. So, as well as our own contribution, we raised funds and we decided that what we wanted to do was to seed fund innovations. We're never going to be a large charity. We are a global charity because of the reach of for Emilia, but we're a very, very small ship. We've got very few people. We have lots of wonderful volunteers who make the charity work, so we don't want to create any sort of organisation business. We just want to see how to bring money in and then take it out with the least overheads we possibly can. So what we decided to do was to seed fund things that we saw and noticed, because we'd been doing due diligence since Amelia's injuries to try and work out what was needed most and where the gaps were.
06:08
And we saw right from the start that there is sadly, such a lack of innovation, and we focused on three things.
06:16
First of all, education and education to increase the workforce to help people recover after brain injury, and so we funded a unique training programme that links nurses and their physical training as a postgraduate module, so not early career nurses, so physical recovery, understanding, research and, very importantly and really uniquely, mental health recovery for people after brain injury, and so we see that there is a huge gap in that mental health space.
06:46
We also decided that we really wanted to understand more about what makes one person recover well and maybe another person with a very similar problem not be able to pick their lives up after they've survived the trauma And so we were sporting a hospital in Boston. It's a great research hospital connected to Harvard, so we sponsored a survey, a major research piece, to understand resilience in young adults after brain injury. So we've got a theme here, we've got the mental health, the emotional recovery, and we've obviously got young adults as a real focal point, because Amelia was 23 when she had her first brain injury and it makes obviously such a huge difference in your recovery journey. And then, lastly, we decided that we would want to sponsor innovation, and so we have something that we created in COVID, which is called neuro rehabilitation online, and we did that in England with UCL and that's a terrific group. We have therapy program.
07:51
So, that's one part of it.
Bella Paige
Host
07:53
Yeah, and a huge part, despite when you say it's only one part. I think it's absolutely wonderful. The education piece is so important that you mentioned. I can't count how many people, even today, that I've, like you know, gone to a hospital or gone into appointments and they don't. They don't get it, they don't understand trying to explain something because they can't see it, and that's such a hard part and component to all of this. And you mentioned the comparison aspect, which is something I know a lot of people struggle with. Tons of my podcast guests have struggled. Tons of people in our community have struggled because they're so used to.
08:31
You know, you're in this bad car accident, maybe you break all your legs or something awful, but with the concussion or brain injury it's so hard because you're like, oh well, this happened to them and this happened to me, but this is minor and that's traumatic. And why are they okay and I'm not? Or why are they doing better than me, or why are they recovering faster? There's so many different aspects to the brain that we don't know about, and so it's really nice to see that they are researching that, because I know when I was younger that's actually where a lot of my anger came from was not understanding why I wasn't better while other people were getting better And I couldn't figure out, like, what was so different about my head injuries, what was so different about me.
09:18
And you mentioned the age factor for young adults. I think that's huge. We have people from young teenagers who listen to the show all the way until older than adults the type thing, and it's hard because it affects all ages of life. But one of the hard things is when you're younger it affects your whole life And it affects your whole life in a very different way. And I've had this conversation with my dad because my dad is a Parkinson's survivor and he has Parkinson's and he said Parkinson's, for example, for 15 years. But I've had that this since i was fifteen and sometimes it comes up for it's like i get it. I'm like i don't know. You do get it. Of course you get like being ill. Understanding having something change your whole life From a very young age versus an older age is a big difference. When your life starts that way, you know they're like you're starting your life, you're young, you're starting ill, you're starting with all these problems, so it can be very challenging.
Jenny Clarke
Guest
10:20
I think that's exactly what we've seen from the thousands of people written to me After she told her story, and so the other part of our charity is in response. So it wasn't what we started out to do, but you. What you just said is so important. When you have a traumatic injury, a brain injury of any sort and, of course, concussion, stroke, brain tumors so many complicated things happen to your brain And i think that people really struggle at any age. When you're young, you're starting out in your life. You haven't really worked out who you are. So i think that everybody tells us that identity and lost of identity is one of the really invisible but incredibly vital problems that people have to Manage and get help to manage, and so when you're young, you don't really know what your path is going to be. If it's completely changed because of what's happened to you, it's very, very different story. So we absolutely understand and agree with you yeah, and it did change my life.
Bella Paige
Host
11:29
As everyone who knows that's listen to the show. It's really tough when you're younger. I've had people go from not going to school because of their brain injuries or going to school or changing career paths. That happens a lot too, because I have symptoms and sometimes you have to work around things and or sometimes you're spending so much time in therapy that most typical career paths would not work and just general things in life. So I think that's really important to talk about and i really want to talk about mental health and a wonderful campaign that you're starting called the thirty three steps to brain injury recovery. But we are going to take a quick break before we talk about all that.
12:11
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13:13
Don't delay your recovery any longer. Find solutions at CognitiveFX today. Welcome back to the post concussion podcast with Bella Paige, and today's guest, Jenny Clarke. So we have been talking about Jenny's wonderful campaign and charity same you, and what I want to get into next is actually mental health, which is probably the biggest part for me through all of this has been the mental health aspect. So do you want to talk a little bit about your experience in the mental health world for post brain injury life?
Jenny Clarke
Guest
13:45
Thank you, So when we started and we, we were trying to find out what was available for the whole sort of cycle of rehabilitation and and we, we, we don't really like that word. I think words are so important because we know the stigmatization for some people is really it was really scary. And when Amida told her story, so many people said you're trying to normalize it and you have in some way normalized the problem, because very few people in the public eye actually admit or talk in public about their injury. That's changing, i hope, but it's, i think, important. So the idea of physical rehabilitation, cognitive rehabilitation and emotional and clinical neuropsychology is a broad spectrum, obviously, and so when we were thinking what we could impact most, and as we are advocates for improving brain injury recovery services, we saw such a big gap between what people have written to us. Thousands of people have written to us who say me and Emilia, and explained their stories and explain what they feel that they need and they want. And then I talked to clinicians around the world, wonderful, fantastic people who devote their lives for finding new ways of helping people recover. But as somebody in the middle, somebody who has been a carer for my daughter for a short while and also I have aneurysms. So I've had one coiled and two not coiled. So I have you know that that it's quite a strong mother daughter story actually is, and so we have these elements that I think many people can relate.
15:28
So what we have seen is that people don't understand that once you've survived a brain injury, a trauma, and you look okay, they don't understand that actually you're really not okay And that recovering from brain injury is a chronic condition. So in our world we accept that somebody has an issue, a disease, a problem, covid, and you're in recovery or you're recovering. You have a chronic condition. What people don't understand is that when you've had a brain injury, it's a lifelong condition that you're living with. And we were really amazed and shocked when, with Amelia, people just didn't have any comprehension that that could be the case because she looked fine. So therefore people think you are fine.
16:19
So when we really looking with clinicians about what services and support and and systems there are to help people, we saw that there was this big gap that we started to talk about as emotional recovery, as neuro psychological recovery, because that's what the clinicians, that's how they described it. But when talking to people to try and explain things that they didn't understand about brain injury. It really got a glazed look. It got a black people just didn't connect with that. So it did take me a while to start to describe it as mental health issues, because of course, we all know that you have anxiety, you have depression and you have terrible feelings of your life slipping away from you and your loss of identity is so fundamental And your brain is so fundamental to that.
17:10
So what we figured out is that if we started really talking about the mental health issues people experience after brain injury and focus ourselves as a charity on being advocates to talk about young adults in particular and the mental health challenges, that would be hopefully a useful thing for us to do. So that's how that started, and the campaign 33 steps to brain injury recovery is all around that.
Bella Paige
Host
17:39
Yeah, that mental health component is huge And you mentioned the invisible. You know people can't see it And I've struggled with that the last 10 years And I know a lot of other people have as well. And understanding something that's chronic, i think it's really hard for people. For example, people who listen to the show on a regular basis know that about five months ago now I got diagnosed with four chronic health conditions and illnesses from my multiple concussions, and understanding that is something that people have a really hard time with. I have very good friends that understand it, but when you meet new people, i find when you try to tell someone that like I have a headache, they don't understand. Like if you're saying you have a headache, you're in a lot of pain or you know those types of things, and I've had people mention oh well, this week was really bad for you. Next week will hopefully be better And it's a really nice thing to say but they don't understand that this is who I am. I am sick. I do have a chronic condition.
18:50
Yes, some weeks are good, some weeks are bad, some days are good, some days are bad, and that's how it works. It is a roller coaster of symptoms. It is a roller coaster of emotion, but that mental health aspect of understanding from other people can be a really big thing and can really help Like how much it's helped me for having friends recognize when I don't feel well before I say something because they've started to notice the very subtle signs that I may give. Those types of things can make a really big impact on you as someone who is suffering, and that 33 steps to brain injury recovery is a huge thing that I am so excited to be joining in and being a part of. So do you want to talk about what all that is and where the name came from? Yes, no of course.
Jenny Clarke
Guest
19:39
So if I just go back just for one second and just say why, same you is the name that we chose, and it's because everybody is the same inside, whatever's happened to them, and that's not just if you've had a brain injury. But I think particularly with a brain injury and the loss of identity, you really want people to acknowledge that whatever issues you face and you overcome or you struggle with overcoming, you are still the same you inside. And as you move through your recovery journey there are times when you really need people to acknowledge that. So that's just fits what you just said.
20:18
So the 33 steps campaign we started as a third year. We've run it And the idea is it might be a bit obscure 33. What does that mean? And it's our attempt to try and start people to understand the scale of the problem of brain injury around the world.
20:36
So the shocking fact if you need any more shocking facts and allies, but the shocking fact is one in three people will suffer some sort of a brain injury At some point in their lives And the figures, i believe, are really underestimated because people with mild to moderate brain injury, people that don't readmit, people who get on with their lives, are not necessarily counted in the numbers. So there are estimates for a couple of years ago of around about 155 million people worldwide are living with this condition And of course it's not just one condition, it's multiple conditions, it's multiple ways of people having to adapt and change their lives. So we said, ok, let's call it 33 steps to represent 33 percent of people. So a little bit obscure, but hopefully, if we keep on doing it and we spread the word and people can see the campaign, more and more people will understand that.
Bella Paige
Host
21:37
I think it is shocking. It is shocking, you know. A lot of the facts around brain injury and mental health are shocking. There's statistics about suicide rate, depression rates. All those statistics are insane. Actually, it's a very easy way to say it Four times as likely, five times as likely. All these facts. That can be a lot to understand. So 33 is definitely a great number to talk about, because people need to realize how big of a problem it is.
Jenny Clarke
Guest
22:08
And then you know, the challenge is also how do you really make that resonate with people? Because it's happened to my daughter, happened to me and because of the people who have written to us, you know we really believe that a human centric approach to looking at the issue is really important. And that's so complicated if you have data on one side and you have the human emotion on the other. And so, again, how do we really try and influence the amazing medical profession to maybe be a bit more open about the emotional issues and to provide more holistic support for people after a brain injury, because they do what they do And it's fantastic. If there can be more innovation, it will improve. But there's also an element that there used to be medicine and healthcare and recovery, you know, was so patient centric, so human centric. So it's how you, you know how people looked after each other. But now, with the obvious, essential need for evidence-based medicine and making sure that people are looked after really properly, there is an imbalance. And so one of the things that somebody, when we started this journey, said to us somebody with a brain injury, a very eloquent young woman in the state, said brain injury doesn't just happen to the brain, it happens to the whole person. So the concept of brain, body and mind, or brain, body and spirit, which is what we like to say so special to a brain injury. And so with our campaign, what we're trying to do is to provide some resources for self-help, and particularly using peer-to-peer help, because that, as a charity, we've seen that that's, you know, there can never be enough people but supporting other people with the same type of issues, because once you know that somebody has gone through the same thing, you know you're not alone, you're not as desperate, because you know it does normalize what you're going through. Thank you for your time today.
24:10
So we have started the campaign. So clearly it's to fundraise, to spread the word, to help same you do more things to spread the word about the issues around brain injury. But we also have three sections to the campaign and we have resources from nutritional advice, from exercise, yoga, mindfulness, meditation, and I'm really excited that you're joining and we can spread the understanding that brain injury and what we represent we're not just a stroke as such, because there is a good pathway for stroke at least, but, goodness me, there is really no real pathway that connects all brain injuries together. So we're just trying to put together some resources on our website saying youorg to help people as they go through their daily lives, and the challenge is to ask people to do 33 of something, 33 steps.
25:06
If you're just a had a brain injury and you're trying to recover motivation to get going because that is the big thing, isn't it You want to add something and you sit there and you think I really can't do this. It's the motivation to keep on because you can't give up. You've just got to keep going every day and do more, as much as you can every day. So 33 of something, 33 miles in a walk in a few days a week, 33 sit ups, 33 patting your dog on the head, 33 times things that you can ask people to sponsor you for to be able to help seeing you spread the word.
Bella Paige
Host
25:47
I think it's absolutely wonderful and I love how you mentioned all the different components of how brain injury really affects all of you and all the different parts of you, and it starts really soon and it'll have already launched once this is out there and I will make sure to have all the links and everything in our episode description and on our website for everyone to find, and we have talked about a lot in today's episode, from mental health to brain injuries and all of everything in between. Just a little bit, i don't know how much to talk about, but is there anything else you'd like to add before ending today's episode?
Jenny Clarke
Guest
26:27
Well, thank you. I would just say one thing One of the why our charities evolve the way it has is because of the people writing to us, and so what we started and now it's quite a formal, you know, organized process, not very formal, but it's a process People writing to us and telling us their stories because, as part of your therapy to get past the trauma, it's very, very important to be able to speak and to have your voice heard, because you know we are facing, you know, the silent problem. Nobody really talks about brain injury. So we've got a program called Portraits and what we would love to do is to ask people to send in their stories and if they want them, we can publish them. And so there is a process where you can send your photograph, where people who are volunteers in.
27:22
At same, you will talk to you and help you articulate what happened to you and what you might need and what help you don't get at the moment. Because the ultimate goal is why can't we all work together collaboratively to really call for change, create a revolution from the ground up, from the people that really care about what happens, because they're going through it. So we need to use a led a consumer led, a survivor led campaign going. If we all speak together and it starts with having one voice heard and then if we have the millions and millions of people asking for change, there will be changes in systems and government and healthcare funding to make it better.
Bella Paige
Host
28:12
I think that's amazing and I hope everyone does do that. If they have any questions, they can always reach out at same you or to myself, and I can help you through that. And I just want to thank you so much for joining us today and sharing all of your work with same you and, of course, as an individual, helping the brain injury community.
Jenny Clarke
Guest
28:30
Thank you Very great, very honored to be involved. Thank you.
Bella Paige
Host
28:35
Need more than just this podcast. Be sure to check out our website, postconcussioninccom, to see how we can help you in your postconcussion life, From a support network to one-on-one coaching. I believe life can get better because I've lived through it. Make sure you take it one day at a time.
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