Table of contents:

00:45 Lindsay Wilson and CENTER-TBI
05:06 Post-concussion side effects
12:22 It can take long to recover from a concussion
15:08 Emotional consequences of a concussion
20:27 A concussion is an invisible injury

Introduction to this episode on the long-term effects of a concussion

In this episode, Lindsay talks about the long-term effects of a concussion. Particularly the mental and emotional experiences that a lot of us know all too well.

This is the first of 2 episodes with Lindsay, who is a Professor of Neuropsychology and one of the researchers studying Traumatic Brain Injury (TBI) within CENTER-TBI. You may remember the Concussion Stories episodes with Andrew Maas, who is the coordinator of this research group.

Concussion Stories

[0:00 Melanie] Welcome to Concussion Stories, a Lifeyana podcast series filled with hope. I’m here to let you know that you are not alone in your concussion recovery. I’m Melanie and I spent more than six years experimenting, training and learning in order to heal myself from a very bad case of post-concussion syndrome. And today, I feel better than ever before.

In Concussion Stories we dig deep while discussing hopeful stories of recovery as well as the hard stuff in the messy middle. If you’re struggling to focus, be sure to take breaks. Down in the description of each episode, you can find a table of contents in case you want to skip ahead. Let’s dive right in.

Lindsay Wilson and CENTER-TBI

Today, I speak with Lindsay Wilson, Professor of neuropsychology at the University of Stirling in the UK. Just like Emeritus Professor Andrew Maas, with whom I spoke on a previous Concussion Stories episode, Lindsay is part of CENTER-TBI. This is a large European research project that aims to improve the care for patients with traumatic brain injury.

Lindsay’s research is focused on traumatic brain injury in combination with quality of life, coping strategies, as well as PTSD. He has also dedicated a lot of time to unmistakeably point out that the medical field needs better methods of diagnosing brain injury.

Almost immediately after contacting him, even though he was on leave, Lindsay answered that he’d be happy to be here with us. I’m at least as happy that he is here today. So let’s start this conversation.

Welcoming Lindsay

Welcome, Lindsay to our concussion stories episode today. Thank you for being here with me.

[1:44 Lindsay] Well, thank you for inviting me.

[1:48 Melanie] I wanted to say that I found it quite special that you immediately told me after getting into touch with me that I could leave the formalities aside and call you just Lindsay. And this tells me a bit about who you are already. But I was wondering if you could tell us a little bit more about yourself. So what are the things you like to do and who are people you like to spend your time with?

[2:16 Lindsay] Well, Melanie, I live in Scotland and one of the great things about living here is enjoying the outdoor world. And so we go hillwalking and sailing. And I like to do that with my wife and my children and friends. So that’s how I most enjoy my spare time.

[2:38 Melanie] That sounds wonderful. As I already told you, I live in Amsterdam, and that’s quite a different life.

[2:45 Lindsay] Yeah, there’s not many hills in Holland.

[2:49 Melanie] No, that’s true. And I would say also not as much wild nature as you have, I gather.

[2:58 Lindsay] Yes, I’m sure that’s true.

Neuropsychology and traumatic brain injury

[2:59 Melanie] So can you explain to our listeners, what does a professor of neuropsychology do? And also, what does it mean, to be a neuropsychologist to you personally?

[3:15 Lindsay] Well, your psychology is a combination of neuro and psychology. So it’s really about the relationship between psychology and the brain. And for me, the brain is absolutely fascinating. I think it’s it’s one of the most complex things in the universe, in fact, and one of the most difficult things to understand.

But we can see over the past 50 years, there’s been huge progress and understanding the brain and there will continue to be progress. So for me, studying the brain is part of a journey with many other people.

[3:53 Melanie] It’s wonderful that you see it this way. And I think this imagination is what you would need to really be good at what you do in this field.

[4:05 Lindsay] Yeah, I think, I mean, I think one has to be inclusive and to think creatively about problems and the way that the problems and daily life, for example, relate to problems in the brain itself. And that’s why I got interested in traumatic brain injury, because it gives us an opportunity not just to study the brain as an academic subject, but something that’s of relevance to the individual.

As a neuropsychologist, I’ve seen many, many people who’ve suffered traumatic brain injury. And one of the things that’s very clear is how diverse the consequences are for people. That people can have very, what appear to be minor injuries and suffer considerable consequences and others have severe injuries but can make surprisingly good recoveries. So it’s it’s fascinating to see this.

Post-concussion side effects

[5:06 Melanie] Yes, yes, I can fully imagine, as a scientist, also looking at this from your perspective that it is really fascinating. And of course, for a lot of our listeners, it’s really a very harsh reality. And I was wondering what are the things as neuropsychologist you are looking into? So what are the things that are coming after a concussion really, that people can maybe recognize?

[5:45 Lindsay] Well, there’s a range of different things that come under neuropsychology and they include cognitive changes – one of the keys of expertise for neuropsychologists – and studying cognitive performance and different aspects of it.

But there’s other things that are important as well, such as the emotional consequences of injury – depression, anxiety – as well as the overall effect it has on the person: how they function in daily life, and also their overall feeling of adjustment in daily life. So all of these, all of these things are part of what I’ve been studying as a neuropsychologist.

How normal are these lingering concussion symptoms?

[6:31 Melanie] Hm. And how rare or how normal would you say these kinds of effects that you just described are for people who have sustained a concussion and who need a longer time to heal?

[6:49 Lindsay] Well, they’re surprisingly common. Not major cognitive problems, certainly, but but minor ones and also lots of different kinds of symptoms that people report after mild TBI or concussion. And one of the surprising things is how long these can last and also what a sizeable proportion of people this amounts to in terms of the effects of TBI.

[7:23 Melanie] Yes, yes, Andrew Maas has discussed a lot of these numbers indeed with us in the last episode. And he has really, well, put a finger on the size of this, well, the way he said it: mild TBI is not so mild. And that is really, I think, hitting the nail on its head. I was wondering if you say a minor cognitive… what did you say, minor cognitive…?

[8:03 Lindsay] Impairment? Yeah.

Mild cognitive impairment

[8:05 Melanie] Impairment yes. What would you describe, what are things in this category?

[8:13 Lindsay] Well, for example, people might find that they’re, they’re slower than they were before. Or their memory is not quite as good. And it might not amount to what would be considered a classic impairment in memory or clear slowing if you compare it with the normal population.

But for the person, there’s definitely a difference there. They’ve lost something after the brain injury. So there can be subtle changes in cognition, which can be picked up with testing.

CT scans often can’t diagnose concussions

[8:53 Melanie] Yes, yes. And sometimes also not. That’s something that Andrew and I also talked about. I can, for example, in my case, when I first went to neurologist, and they did all the tests, and I also got a CT scan. They told me that I was… nothing was wrong with me, that were the words. And I said, but I feel that something is really wrong with me. So these are just subtle changes that you also talked about.

And then he said again, no, nothing is wrong with you, this is good news. And I understood that there could have been worse news. Yes. So I was happy that there weren’t any worse things going on with me. But still, there was no good news for me because now I was not only feeling that something was wrong, but also the doctor couldn’t see it.

And that’s something that a lot of us struggle with. And that’s something else that Andrew also talks about a lot the last time, that CT scans often feel to see mild brain injury?

Diffuse axonal injury

[10:05 Lindsay] Yeah, absolutely. One of the most important kinds of brain injury is diffuse axonal injury. That’s microscopic injury to the neurons in the brain. And CT just doesn’t see that at all. Sometimes, in severe cases, it will pick up indications of such injuries, but not in mild cases. So there’s a lot of limitations to current imaging and other ways of detecting the effects of a head injury.

[10:41 Melanie] Yes, I believe that you have also written that there is a need to go beyond the idea that only a single outcome is needed to assess individuals after a TBI, right? Can you…

Consequences of a mild traumatic brain injury

[10:57 Lindsay] Yeah. Yeah, certainly. And that’s really to do with what I was saying a bit earlier about the need to look at different aspects of the consequences, including emotional factors. And also cognitive factors.

Traditionally, what people have concentrated on after brain injury has been people’s functional outcome, that is: return to work, return to independent living, these aspects. But there’s a lot more to it than that. And certainly in in mild TBI, it’s clear, there’s a lot of different consequences.

[11:33 Melanie] Yes, yes. Because you have already touched upon the subjects of anxiety and depression, both of which I’ve experienced myself as well. And I fully recover from so it’s very important for people, I think, to know that that’s possible. But these are things that no doctor ever told me about when I had my concussion.

And I also had… I think I was very late in diagnosing myself with them. So saying that something was wrong, and that I needed help. But also, because I’d never knew before, what was hitting me. I never knew all of these things that were washing over me that I never expected. Do you recognize this from your research as well?

It can take long to recover from a concussion

[12:22 Lindsay] This is really very common Melanie, this is a common experience. And particularly in the early stages, it’s exceedingly common to have some symptoms or problems after a mild TBI. And for most people, these will go away, but it takes quite a long time.

And we know that it can take up to three months, for example, for symptoms to subside for people with mild TBI. I mean, there’s a group also that suffers for longer, but for many people, it will be months, weeks or months that they have symptoms.

Anxiety, worries and expectations

And people don’t expect that, they don’t expect to have symptoms for such a long time. And it’s quite disturbing that to have these symptoms. And it means it can affect your work and so forth. And you’re not expecting it and it produces anxiety and concern about yourself. If you expected that you would be you would be better prepared and it might be less of a problem.

[13:29 Melanie] Yes, exactly. And it’s also not exactly one of the subjects that we were taught in school, how to deal with adversity.

[13:38 Lindsay] Well exactly, yes.

Coping strategies

[13:40 Melanie] Yeah. And then, when you’re in the middle of this process, when your brain is broken, and you need it the most, but you cannot really use it, you need to learn all of these, well, the way you say it, coping strategies in order to be able to manage your recovery.

[14:01 Lindsay] Yes, exactly.

Concussion symptoms months later

[13:40 Melanie] Let alone find the way how to recover. So I know that a lot of people indeed recover within the first three months. But also people that are listening now have had their concussion for longer than that time. And it’s been really hard for them to adapt, to find a way, especially when the medical field doesn’t always know what to do with them.

[14:40 Lindsay] I think that’s right. It’s only just becoming recognized that people do continue to have problems after mild TBI. And it really can be quite a high proportion of people, perhaps a third or a half at six months and continuing 12 months and beyond. And even very long term follow-up, we know that people can continue to have problems after an apparently mild TBI.

Emotional consequences of a concussion

[15:08 Melanie] Yes, yes. And coming back to the emotional consequences that you just described. So for example, at first, I think there are a bit milder consequences, like you feel that you can’t keep up with work, it’s harder to fulfil expectations that others have of you. Because you could do things before and now you can’t.

You feel like you’re failing loved ones, for example, because you can’t do everything again anymore. And then after a while, for example, if you can’t go back to work, and if you can’t do sports, and can’t meet friends in restaurants, etcetera, isolation often creeps in.

And from there things like anxiety, panic attacks, depression… people have a bigger risk to experience them than before, right? I feel it’s like, adding up, all piling up. Do you see the same?

Minor symptoms can have huge side effects in daily life

[16:18 Lindsay] Yeah, absolutely. What you’re describing is a common experience. People for example, when they go back to work, and they find that they can’t do things as quickly as they could before, they might find that things are difficult. Colleagues might get a bit frustrated by them, because they’re slower.

And the person themselves obviously feels badly about it and start to worry about it. And in the worst case, they may lose their their job because they’re not performing as they as they should be. So you get you get a whole cycle of problems that can be set up by what at first seems like a fairly, quite a small or a minor symptom, but it can have great repercussions for the individual and their performance in daily life.

Increasing concussion awareness

[17:21 Melanie] Yes, exactly. And how do you feel… because as I as I hear, as I listen to you, I feel that this is something that you would like to see changed, right, the awareness at least of these effects would become bigger. How do you see this? How can we do this?

[17:42 Lindsay] Well, I think there’s there’s quite a lot of things we can do. One is to make sure that the individuals who have a TBI or mild TBI know that there are typical consequences and they’re likely to last – at least several weeks. And so they’re prepared for that. But undoubtedly, it’s also important that employers know, or other people know, that their family knows, that there’s likely to be changes for a while.

And then another thing that we should be doing, clearly, and that’s not done systematically, is just following up people with mild TBI to find out if they still have problems, three months, six months down the line. Because these are people that should be given specific help and more attention from the system.

Follow-up by the care system

[18:39 Melanie] Yes, that’s a very good idea. And do you feel that that should be done by a GP? Or who should fulfil that role?

[18:49 Lindsay] Um, well, it will depend on the on the care system. I think it would be good if the people that are involved in acute care did do some did do some follow up. It can be very light touch. It could just be a matter of a of contacting people with a few short questionnaires that would identify whether they are still having issues later on.

And then if they are, they could be advised to seek appropriate help. And what that help would be would depend on the on the care system and the place. But a lot of people are just left to work it out for themselves, which I think is not the best solution.

Concussion care is developing

[19:41 Melanie] No, I think it’s the worst solution, especially when it comes to psychological problems. But of course, it’s coming from… we’re developing the whole system and all the knowledge about concussions is developing. And that’s something to be really happy about. It’s just, I’m sorry, but it sucks for the people who still have it right now.

But that’s what we’re doing this for. And that’s what I’m working for. To increase awareness and also to help people hands on right now, if they’re struggling. And also this conversation with you will really help, because I know that people feel lost in their feelings, especially in all the experiences that come with a concussion and the isolation.

A concussion is an invisible injury

And I also know, I just came up with this question I really want to ask it, I also know that people struggle with that others, loved ones, can’t see their injury. So it’s an invisible injury. And it’s hard for them to really show all of their troubles and everything they’re struggling with, because on the one hand, when they’re spending time with loved ones, they want to spend it in a nice way, and they don’t want to talk all about their troubles, because when the loved ones aren’t there, they already have all the troubles all the time. And on the other hand, they don’t know where to start. Is there something that you could say about this, something you feel would help maybe?

A silent epidemic

[21:23 Lindsay] Well, traumatic brain injury has been called a silent epidemic for that reason, because it consists of changes and disabilities that are not obvious to other people. So that is certainly a key issue. And part of this is, people with traumatic brain injury understanding that they may need help, and that they should seek help and also involve the relatives and carers so that they’re informed about the kinds of changes that might have taken place.

What do you take away?

[22:08 Melanie] Now, I would love to hear from you. What do you take away from this episode? Is there something that you can apply to your life right away? Head on over to lifeyana.com and leave your comment now.

And if you want to hear and read more Concussion Stories, actionable steps and inspiration, be sure to subscribe to the Lifeyana email list while you’re there, so that you never miss out on new materials we constantly make for you.

If you want to support this podcast, head on over to patreon.com/confessionstories. Thank you for listening to this Concussions Stories episode by Lifeyana. May you be well may you be happy.