90 - Dr James Jackson - Brain Fog, Cognitive Impairment & Brain Injury

Episode 90 of the Long Covid Podcast is a chat with Dr. James Jackson, who is a psychologist specializing in neuro psychology and rehabilitation, and an internationally renowned expert on the effects of illness, including long COVID, on cognitive and mental health functioning.

This was a wonderful discussion with so much help as well as hope!

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(music - Brock Hewitt, Rule of Life)

Transcript

Dr James Jackson  
Hello, and welcome to this episode of the long COVID podcast, I am delighted to welcome my guest tonight, Dr. James Jackson, who is a psychologist specializing in neuro psychology and rehabilitation, and an internationally renowned expert on the effects of illness including long COVID on cognitive and mental health functioning. So there's an awful lot to dive into here. So a very warm welcome to the podcast.

I'm really happy to be with you today, Jackie. Thank you.

Jackie Baxter  
Thank you so much for joining me. So to start with, would you mind just saying a little bit more about yourself and what it is that you do?

Dr James Jackson  
I'd love to. I'm a neuropsychologist. And that means that I work at the intersection of the brain and the body, if you will, we look not only at the brain, but we look at how various illnesses and diseases and things of that sort impact the brain. I've been at Vanderbilt Medical Center in Nashville and in Tennessee, to your international listeners home of country music, they might know it for that reason. Been in Nashville for a little over 20 years. 

And really, before the pandemic started, I had been working largely with survivors of critical illness, people who were seriously ill - ill enough to be in the ICU on a ventilator fighting for their lives often. And we were interested in trying to figure out what the long term effects of that experience were on people - on their brains, on their bodies, on their mood. 

So when the pandemic emerged, we had already been studying, we had an infrastructure to study medically ill patients. And we started studying COVID survivors who had been in the ICU themselves on a ventilator, themselves hugely sick. And as we started doing that a logical extension seemed to be - perhaps we should start studying, working with, COVID survivors generally, regardless of whether they'd been in the ICU. Why don't we expand our work a bit, to include COVID survivors. So we did. 

And in the United States, there's a famous movie, a favorite famous movie, called Field of Dreams. I don't know if you've seen that or not - Kevin Costner, and there's a famous line in the movie. If you build it, they will come - famous line. And so I think our experience since the pandemic has been, if you build it, they will come - that is we created a program, we created some support groups, we started seeing patients with long COVID, we built it. And then they started coming, you know, first locally then nationally, then really people around the world. And it's been one of the great privileges of my life, to work with COVID survivors, to do research with them, to get to know them, and to advocate for them.

Jackie Baxter  
Yeah, that's wonderful. And I love what you were saying about, you know, both the ICU patients and the non-ICU patients, because I think, initially, a lot of the kind of narrative around COVID was that, you know, if you weren't hospitalized, then you would be fine. And of course, we now know that that is, you know, not the whole story, because I think, I think the majority of long COVID patients were not hospitalized. Certainly many, many of them were not. So yeah, the kind of both cohorts being important. I like that.

Dr James Jackson  
Yeah, really, we have three groups of people, if you will, I think we've got people who were in the ICU, typically on a ventilator, they were profoundly ill with COVID. We have COVID patients who were never in the ICU, but were in the hospital, there are many of those people. And then the largest group, as you said correctly, the largest group is this vast number of people - 10s of millions of people around the world - who were not only never in the ICU, they were never even in the hospital. 

And as you know, many of them were not strictly speaking that ill right. Some of them will tell you that they had just a touch, if you will, of COVID. And the story that has been surprising for them, and I think to us, is that although they weren't that sick, the outcomes that they have experienced and that they continue to live, are quite dire in some cases. They're very derailing. They're profound. And that's been a little mysterious, I think. And that's been surprising. 

And those are the folks again, this huge number of people. Those are the folks who are especially likely to be overlooked, marginalized, dismissed because family members, friends, bosses, whatever, shrug their shoulders and say, you know, you really weren't that sick. I really can't believe that you're struggling a year later, because you really weren't that sick. So that is the group in some ways, where the greatest need is because they're the ones who have been pushed to the side the most.

Jackie Baxter  
Yeah, yeah, that's absolutely true, and the worst thing that you can say to somebody, you know, the sort of, Oh, you're too young to be sick, or you know, you were healthy so how come you're sick? And these these things that you get told. And I think people probably mean well when they say them, but they don't really understand quite how hurtful it can be to somebody who is extremely sick, despite the fact that they were young and healthy, or, you know, whatever their circumstances were beforehand, I think.

Dr James Jackson  
Absolutely. As we interact with patients, they tell those stories a lot. That is someone says to them, you know, you, you're really young, you're really fit, you can't be this sick. I think some people take that quite personally. I think some people are able to say perhaps, you know, they meant well by that. But regardless, I think it's hurtful. I think it's confusing. And I think that is the lived reality for so many patients - that people in their lives, including close loved ones, they don't necessarily get it, they don't really get it. 

And I think that's one of the reasons the support group program we've developed at Vanderbilt, which includes five support groups a week, close to 100 patients a week. I think that's partly why it has been so successful. Because you're in a community, a group with other people who get it, you know, they get you, and they're not saying, Jackie, you look pretty young, you look pretty fit, you know, you can't be that sick, quite the opposite. They're affirming and they're nurturing, and they're respecting. And I think that's really what people are looking for. But all too often, in 2023, shocking to me, that's not what they find, you know, they find gaslighting, and they find dismissal, and they find invalidation and all of those sorts of things.

Jackie Baxter  
Yeah, yeah, you're right. And it's sort of insult after injury, isn't it? You know, when you're not believed? When you're gaslit. When someone tells you that you look fine. So how can you be sick - on top of being extremely sick. But yeah, yeah, validation is just so incredibly powerful, isn't it?

Dr James Jackson  
It's hugely powerful. And I think it's one thing people are looking for, I think we need to not stop there. You know, people need more than validation. But validation is crucial. You know, I wrote a book, c"learing the fog - from surviving to thriving with long COVID, a practical guide." That's a mouthful - that's published in the states and published also in the UK. So that's lovely. But in one of the reviews on Amazon that I happened to read the other day, it said, "reading this book is like a warm hug for someone with COVID. It's like a warm hug." And that made me really happy. Because I think what is needed in this moment, culturally, is more kindness, more caring, more tenderness, all of that. 

But I think it's important to know, we don't have to stop there - we need to offer people validation, admittedly, 100%. So true. And in addition to that, I think we need to say, we can do more than validate you, we can steer you in the direction of treatments that need to be studied more, but things that are hopeful, we can do more than validate you, we can put you on a path toward finding ways to recover and toward trying to find ways to live a meaningful life, even if your symptoms don't improve. 

And that's my message all the time. You know, every day of the week and twice on Sunday, as the saying goes, that's my message - that you can find a way to live a meaningful life, even if your symptoms are still percolating. We need people to believe that I think,

Jackie Baxter  
yeah, definitely. And certainly that, yes, validation. And support and kindness  is the baseline, isn't it? You know, it's what we build upon. That should definitely always be there, I think. Yeah. 

So I'd love to talk a little about sort of brain fog and cognitive impairment. And are they the same thing?

Dr James Jackson  
It's a great question. There was a big paper that came out this week. I think it was published today in the Journal of the American Medical Association here in the States. And the paper described what they view as the 12 primary symptoms of long covid - paper is just out so it will be controversial, a little bit provocative. But brain fog is one of the key symptoms mentioned among the 12. 

And I think that's lovely on the one hand, that is cognitive problems are clearly in that hierarchy of difficulties. But what I think is unfortunate is that - I have no idea what that term means, right? You can sample 50 people with long COVID with brain fog. And you could get 40 different definitions, I think, maybe 50. Right, maybe 60, of what that means. So that's a problem. 

I think there's no doubt that when we think of severity, there's a huge range. And we certainly interact with patients on the one hand, who tell us that their cognitive difficulties are a nuisance like swatting a fly, right, swatting a mosquito, they're a nuisance. That would be one end of the spectrum - all the way to the other end, where they're so severe, that they are disabling, right? They're not hugely different functionally than quite a severe brain injury, than a significant dementia, there's a huge range. 

So some of those symptoms, I think, not only reflect brain fog, but they clearly reflect what I would call cognitive impairment - they clearly reflect what I would call a brain injury. And I think that's the term that I prefer to use - brain injury - because as with brain fog, as with long COVID, brain injuries come in all sorts of shapes and sizes, meaning you can have a very mild brain injury, after you hit a ball playing soccer or football after a concussion, right? You're a little woozy. That could be a very mild brain injury all the way to you fractured your skull in a car accident, right? There's a penetrating injury, everything between. 

And long, COVID related, neurologic problems are the same. They're mild, they're moderate, severe. The term brain fog is probably not as helpful as it might be in describing those problems. And I think more importantly, for many patients, when they hear that term, they feel dismissed because they say, you know, I don't know what you think fog is, but what I've got is a lot more severe than fog.

Jackie Baxter  
Yeah, I mean, I think, like we were talking about earlier, when we're saying that the sort of, Oh, you look well, kind of thing. I've realized throughout this experience, that language is so important. And how we say things and how we interpret things other people are saying, and that they might not necessarily be meaning to be hurtful, but that is how it's coming across. So I've become much more aware, I think of how I say things to people as well. 

And I think that's probably a good thing. I think we should all be aware of what we're saying and how that will impact people. But you're right, you know, the term brain fog, it kind of, to me, sounds a bit like the more of the sort of mild annoyance end of the spectrum, you know, something that's, you know, it's a bit annoying, it's a bit like a mosquito, or well in Scotland, midges. Whereas you know, when you're talking about people who are really very severely affected, it's almost like calling it brain fog could always be a bit of an insult, really?

Dr James Jackson  
I think that's right, I, you know, many of our patients - I have a patient, big, strong COVID Patient Advocate, an ardent Patient Advocate named Frankie, and I have this conversation a lot. And he has talked many times about feeling like that term brain fog, it's really minimizing, can be to the point of being insulting. And I think that's right. 

I think the other problem with it is, I think two things. One, it doesn't have a lot of specificity. So when we think of cognitive problems that long COVID patients have, at least the patients I interact with, they're pretty specific often - often their problems with processing speed, meaning the wheels in my brain are turning pretty slowly, you know, I'm getting to the answer, it used to take me no time. Now, it takes me five times as long - processing speed. Sometimes problems with memory, sometimes problems with something called executive functioning, which has to do with planning, strategy, multitasking, etc. 

So brain fog doesn't really inform a provider, or a patient about which of those problems exist, about which of those issues are true for you. And I think it's important for patients to be able to have that level of focus, partly because - this is second point - partly because we want to know, need to know, what your problems are, if we're going to figure out how to rehabilitate those. So we're gonna send you to cognitive rehab, which with my patients is consistently effective. It's not necessarily like a magic pill, but it can be vastly helpful for many, it can be a game changer. 

If we're going to send patients to rehab. We need to know what to rehab. Do we rehab memory? Do we rehab executive functioning? Do we rehabilitate processing speed? What do we rehabilitate? And brain fog - that doesn't inform any of those conversations. If that makes sense.

Jackie Baxter  
Yeah. So it's almost like it's a sort of underwhelming umbrella term, isn't it?

Dr James Jackson  
Exactly. Exactly. 

Jackie Baxter  
Yeah. So I mean, you, you mentioned a brain injury earlier. And you know, we know that COVID. And I'm sure the same is true for other post viral conditions. This kind of, yeah, brain fog, or cognitive impairment or whatever it is that you call it. Do we know what causes it? Is it the same mechanism for each condition?

Dr James Jackson  
It's a great question. And I think it highlights a conundrum, which is, we talk about long COVID. You know, and we could spend a whole session on this, and you may well have done that, right. We talk about long COVID and the fact that that term itself, right, is hugely amorphous, right? The definition is very wide. It's a little unclear what people mean by it, right? There are symptoms that you might have with long COVID, someone else with long COVID might have totally different symptoms, there may be no overlap. So I think that's a challenge. 

But what we know is that for people with long COVID, they often have primary cognitive problems, they often have primary mental health problems, they often have primary fatigue, let's say - those would just be three that I have started to call the unholy trinity - cognitive, mental health, fatigue. We could go on and on and on and on with this. And probably, to some extent, depending on the manifestation of the symptoms, cognitive versus mental health versus fatigue, there are some similarities in mechanism and likely some differences in mechanism. 

And likely, if you had COVID, and were in the ICU, and you had COVID, and were sick for only a minute, but still have long COVID. Those mechanisms are very different also. Right? So ICU survivors, they may have been resuscitated in the ICU, they likely have what is called a hypoxic brain injury, they were delirious. So those are very different pathways to a brain injury than people in the community may have had. 

We've done so much research on long COVID. Often people say, we need to do more research. I don't disagree. But I often say I think the real thing we need is we need to do better research. We need to do better, more focused research, we need to do research with bigger samples, richer methods. And that research hopefully will inform a little bit more specifically about mechanism. 

With that said, I don't think we need to know necessarily - I want to know, we should know - but I don't think we have to know what the precise mechanism is of cognitive impairment in long COVID patients to begin the process of rehab.

Jackie Baxter  
Yeah, yeah. I mean, that's, uh, we were talking just before we started recording, weren't we about the post-its that I have on my wall. And listeners may may have remembered me talking about this before. And it's this "Don't let what you can't do prevent you from doing what you can", you know, don't let what you don't know, prevent you from starting to try things. 

Dr James Jackson  
Exactly. 

Jackie Baxter  
Mesaybe we will never know all the answers. But that doesn't mean that we don't have things that we know will make some sort of a difference to people. You know, I think it's you know, it's the 1%, isn't it? You know, if you are sick, then if someone says you can do this, and it will make you 1% better, then who wouldn't try it?

Dr James Jackson  
Exactly. Yeah, I think it's a really good point. I mentioned support groups before, and we have a lot of those. And the model here has been really helpful and effective. And they're more common in Europe and the UK. The UK, I know is part of Europe. But they're more common across the pond, let's put it that way than they are in the States. But I thought in the states, that this model would take off - this support group model would take off, there's a lot appealing about it. 

One appealing point is you can touch a lot of people, impact a lot of people at the same time. In a support group, right. Another point of appeal is people can be anywhere and everywhere. They can join you via zoom or teams or whatever. There's a lot to commend it. And yet it really hasn't taken hold in the main, as a model of treatment. And I don't know why. But I think one reason is just what you've alluded to - there are people really well meaning who have said, you know, I don't really want to start a program, a support group program for long COVID survivors, until I have all of my ducks in a row. 

To which I say, Gosh, When on earth will you ever have all of your ducks in a row? You know, I think of that In the context of things like marriage and family. My wife and I have three kids, they're getting older now, we have a daughter still in high school, two who are done with high school now. But if we would have waited until we were ready to have kids, I don't think we ever would have had kids, right. 

So for me, the challenge is, let's do something now. Let's not be reckless, let's not do anything that would be harmful, we have an obligation, moral and ethical not to do that. But let's not wait to lead support groups. Let's not wait to do cognitive rehab for patients who desperately need it, until we are perfectly ready to start. Because if we do, you and I are going to be having this conversation in 2033. Right, about what we haven't done. And I think that's an area where we can improve and grow a bit as healthcare professionals, be a little more action oriented, I think.

Jackie Baxter  
Yeah, yeah, absolutely. I think I've always been a try things first, you know, I'd always rather have tried it than not tried it. And, you know, I think we make a lot more mistakes that way. But you probably learn a lot more from them, and you're more likely to find something that does work. And, you know, there's obviously the question of sort of safety and all of that as well with that. And I think many people with long COVID, I know myself, have basically been hacking our way through this. And we've been trying anything and everything. And you know, we find all the wrong things. But we do find quite a lot of the right things as well.

Dr James Jackson  
I think it's a great point. And I think related to that, there's a phrase that I use a lot you know, it's been made popular, this phrase, "you can do hard things", you can do really hard things and we can define what hard is right? I mean, hard could be climbing a mountain. You know, when I was in the United Kingdom years ago, we climbed Mount Snowdon, and that was really amazing and wonderful, little rainy, also, I might add, but it could be climbing a mountain. 

But more often, in the context of long COVID, long COVID hard things are, hey, let's find a way to move out of our comfort zone, right, let's find a way to consider that maybe there are things we can do that we have closed doors to, perhaps we still can do them, right? Maybe you can go to Boston on an airplane, as one of my patients did to visit some family members. You're cognitively impaired, you're afraid that you will get lost, but maybe you can actually do it right. Maybe there's a way to try it, you can do hard things. 

And I think too often - this isn't unique to long COVID. It's true with chronic illnesses of many kinds. It's true for mental illnesses of many kinds. Too often the idea is, if I've got this challenging illness, it follows somehow, that there's this vast array of things that I can't engage in anymore, I can't do them. And until these problems go away, I can't even try them. I understand why people feel that way. I mean, I absolutely do. 

A different frame, though a different framing is - maybe there's a way to coexist with hard things, right? Maybe there is a way, even if these symptoms don't go away, to do really hard things, right, to pursue really hard goals. And when patients do that, sometimes the hard thing is as simple as - I'm on a zoom call. I'm in a support group. I feel ashamed and embarrassed. The hard thing is, I'm gonna say a few words today, right? The hard thing is, I'm going to turn my camera on today, right? I'm going to be vulnerable today. That can be the hard thing, right? 

But you do one hard thing. And then you realize, oh, my I've done a hard thing. And then you do another hard thing, right? And you're stringing these together like pearls. And before you know it, you've accomplished so much more than you thought you could. The hard thing might be, I can tell my story to a reporter. It's really scary. I'm going to try it. I would say to people with great respect and compassion, come on in, right, the water's fine. You can do hard things. I can do hard things. We can do hard things together.

Jackie Baxter  
Yeah. I love that. And it's, you know, finding a way to do it in a way that works for you, as well, isn't it? You know, it might not be the same way as other people do things. But you know, maybe yeah, you know, finding a backdoor, you know, can you join your friends party via WhatsApp or something even, you know. I think one of the maybe silver linings of this pandemic is that we have proven how many things can be done remotely. So that should be something that stays for those people that it works for, you know, it should be an option - hybrid events. I loved hybrid events. It was amazing. You know, I could go to concerts from my sofa,

Dr James Jackson  
I agree with that. I think that has been a revolution - telehealth to name one, right, seeing patients or seeing doctors remotely. It's a shame that it took the pandemic, at least in the states to kick that into gear. But that's a really good outcome. 

I've learned a lot about this, this issue of hard things in the context of my own recent history in 2018, or so. I was diagnosed with OCD - with obsessive compulsive disorder. And it came on pretty acutely during a really stressful season. And I didn't know what was going on, I thought I was losing my mind. And I went to see a psychologist, a psychologist I already had a relationship with. And I said, you know what's happening, and it didn't take her too long to tell me this is OCD. And so she said just that, you know, you have OCD. 

And I said, Okay, let's get rid of it now, that can't be too hard. And she said, you know, some version of Hold the phone, right? Hold on here. It's not quite so simple, right? Yeah, there's no magic wand you wave. She said, You know, maybe that we're going to have to teach you how to live with this. And I said, No, no, no way. That you know, other people can live with this. I don't live with things like this. I think it was arrogance  - there was certain arrogance. I'm going to conquer things like this. I eat problems for breakfast. I don't live like this. 

And she didn't say, Well, we'll see. You know, she's too kind of do that. But she may have thought that, and we worked and worked and worked and my symptoms got better. They got worse. But generally I didn't make much progress. And then about a year later, I remember really vividly calling her on the phone, you know, talking to her via telehealth, not in her office, during the pandemic. And I remember saying to her, Jenny, her name is Jenny, Jenny, I think I'm ready to accept this. And I don't know exactly what that means. But I think I'm ready to really come to terms with this. 

And when I did, and you accept things in part, and then eventually, in whole, you know, it's not like turning on a light switch. It's not all or none. But when I started to accept it, my life really started to change, the whole game started to change. And I started to realize there's a way to make peace with, to alter your relationship with, things that you don't like. And I realized that even as I was sad to have OCD, I was over-idealizing this past that I wanted to get back to, as if my life had been perfect before OCD. 

Well, the truth is, there was no perfect life to go back to right, like these were new struggles. I didn't want them. No one wants long COVID - I desperately don't want anyone to have long COVID. But considering the possibility that even as we're pursuing a cure, even as we're advocating for clinical trials, even as we're trying our darndest to figure out how to fix these problems, considering the possibility that we can find a way to make peace with this, that we can find a way to thrive with it. I think there's not much that is a lot more important than that, even as we are working for a cure. 

Jackie Baxter  
Yeah, yeah, definitely. I think I struggled with the concept of acceptance. You know, it was something that was banded about, you know, and it was like, oh, you know, you've got to accept your situation. You've got to find acceptance, you've got to do all of this. And I just railed against it. I think possibly in a similar way to you. It was like, no, no, this isn't me. This isn't, you know, I refuse to accept this. Absolutely not No, no way. And I fought and I fought and I fought, and I pushed and pushed and pushed, and hey, nothing got better. 

And then it was almost like when I realized that acceptance didn't have to be that this would be me forever. It was that this is me in this moment. Suddenly, I stopped fighting and things started to get better. So you know, I think, yeah, I think I mean, it takes us back to you know, language and and how people interpret things, doesn't it? You know, if someone says acceptance, it doesn't necessarily mean the same thing to everybody. But that was kind of what it meant to me. And that was a bit of a turning point, I think for me, you know, things did start getting better once I stopped fighting.

Dr James Jackson  
I love it. I love your comment. And I think it's very true that often the term acceptance provokes a certain defensiveness in people, because they think - and I understand why you wouldn't like the term if this is what it means. They think it means therefore, I should be fine. I should be happy with this state of affairs, right? All of that. And I think that's exactly not what it means. You know, what it means is in this moment, right now, here's where I am, you know, I might want to be somewhere else. Here's where I am. So what can I find to do about it right now, even as I'm hoping, I'm praying, if you're a prayer, you know, I'm pulling every lever, if that's who you are, to try to get better. Right here right now I'm accepting. This is where I'm at. And there's a certain freedom in that. And I think many people, when they get to that place, they do begin to improve. 

And I think what it highlights, and I think this is difficult to overstate, I think it highlights that what is going on with us mentally, psychologically, emotionally, whatever you want to say, there's no doubt that that impacts where we are physically. So there are a lot of reasons to attend to your mental health, to manage your stress to engage in self care. 

But one of those reasons, several of those reasons, are that the more you do that, the less that causes your physical symptoms to flare. You know, the more stressed I am it makes my fatigue, already bad, even worse, right. The more depressed I am, it makes my brain fog, grounded in biology, even worse. So I think it's important from that standpoint, to attend to mental health.

Jackie Baxter  
Yeah, yeah, definitely. Absolutely. So you've mentioned, was it cognitive rehab, I think the phrase that you mentioned, can we talk a little bit about about that, and how we would try to improve brain fog, cognitive function.

Dr James Jackson  
So let's talk about cognitive rehab. One of the great pioneers of the last 50, or 100 years in the cognitive rehab space, is a woman from a little south of you, Dr. Barbara Wilson. And she is one of the leaders, was one of the leaders, in an area focused on compensatory strategies for the remediation of cognitive problems. Many others have joined her in this effort. 

But the idea generally is you've got some cognitive deficits, whatever they are, they are limitations. So to improve your functioning, we're going to teach you some strategies. We're going to help you learn some skills, we're going to help you integrate these things deeply into your life, so that you can be more effective functioning. We're going to teach you these strategies to offset your death, your deficits - compensation essentially. 

So a simple example would be there's something called goal management training. That is the fastest and most effective approach for the treatment of executive dysfunction in patients with any condition. If you have executive dysfunction, you want to get something called GMT, GMT. And GMT relies on a lot of approaches. But one simple one is a technique called stop and think. 

Stop and think is simply learning to recognize when I'm in a high stress situation, when I'm in a hurry, when I'm tired, that's when I'm likely to make my biggest cognitive mistakes. That's when I'm most likely to drive to the wrong office for an appointment. That's when I'm most likely to back into someone's car in a parking lot, right to leave my stove on. I could go on right, that's when I'm most likely. 

So in this stop and think technique, you're simply recognizing here is when I'm most vulnerable. That is when I need to remind myself, in the moment, to stop, evaluate, think about what I'm doing. There's a simple example. I mentioned it in my book, it's easy to understand. 

We had a patient at Vanderbilt. Vanderbilt is a big place. Tennessee is a big place. He lived 200 miles, let's say from the medical center, he'd had a long day, the clinic, he had to pick some medication up - it was really important. It was Friday, the weekend was almost going to be here. As he was quickly leaving the hospital. He walked right by the pharmacy to his car, took off down the road. Got two hours north of here, only then did he realize, Oh my gosh, I didn't pick up this crucial medication right, by now at six in the evening, the pharmacies closed, you know, what do you do? 

So a simple technique we can teach is - all right, when you come to the medical center, before you get in your car, stop and think, right, stop yourself in your tracks. Reflect for a minute, think about what you're doing. See if you forgot to go to the pharmacy, whatever the case might be, stop and think. 

Other examples that would be easily understood in simple - when you have a complex task teaching people to break it down into digestible bites, if you will, how do you eat an elephant? The joke goes, one bite at a time, right? Develop strategies, use post it notes. This is the essence of cognitive rehab. And when people do it - it's much more than what I've described. When people do it, it's really, really helpful for their functioning. Unfortunately, whether it's in the UK or whether it's in the US, very few people get it, it typically is delivered by speech and language pathologists, an underappreciated group of warriors, I would say, in this fight against COVID. And all too often people don't get it even though they need it.

Jackie Baxter  
But yeah, I mean, that's fascinating, isn't it? I mean, I was just thinking, for myself, some of those techniques sound like they might be useful. I mean, how many times have we got in the car without thinking and driven off in the wrong direction, because we've forgotten where we're going. You know, and this is, like, completely healthy people do this. Which I guess in some ways, gives you a bit of a window into someone with brain fog, or cognitive impairment, of how scary that must actually be

Dr James Jackson  
hugely scary. You know, there's a concept again, in goal management training, GMT, called automatic pilot. And automatic pilot is this idea that for brain injured people, especially, but as you noted, really for all of us, when we're in a high stress situation, when we're tired, when we're hungry, when we're overscheduled. I'm all those things all the time, right? That's my life, that often that's when we are not thinking right, we just turn on the automatic pilot, right? The automatic pilot is flying the plane, we're not paying attention. And that's when we're likely to make mistakes. 

And when you can begin to realize that there is a rhythm to this, there's a rhythm to making mistakes, there's a rhythm to making cognitive errors, there's a likelihood that they're going to occur in certain times and certain places, then you can begin to strategize to try to solve those. And that's the first piece, frankly, of the puzzle.

Jackie Baxter  
Yeah, definitely. You know, it's almost like, you know, breaking things down into sort of bite sized chunks. 

Dr James Jackson  
Exactly. 

Jackie Baxter  
It's like, sort of cognitive pacing, isn't it? You know, we know all about physical pacing, you know, you stand up and brush your teeth, and then you take a break, and then you you know, I don't know, whatever you do next, and then you take a break. But we don't I mean, I certainly don't, remember to do this with the cognitive stuff. It was such a surprise to me when I, you know, I overdid it physically all the time. Because, you know, we don't know how not to to start with. But it was when I realized that, you know, actually, I used to be a big reader, and then starting to try and read a book - couple of chapters, why am I so tired? It just didn't click for so long, that the cognitive exhaustion was actually just as exhausting as the physical exhaustion, but we don't really think about these things when we're healthy, do we?

Dr James Jackson  
I think it's a great point. And I think it's worth noting, just what you said - that cognitive processes can also be very exhausting, right, they can also facilitate, can lead to crashes and flare ups and things of that sort. So often before someone embarks on a cognitive rehab process, although our experiences rehab experts are typically very thoughtful, they're very circumspect and reflective, concerned about this. It is a good idea, nonetheless, to check in with your physician and say, Does this feel okay to you, this could be exerting. Is this okay for you? 

There certainly are people too, I think it's important to note, who don't necessarily have that fatigue component. You know, we see patients, a lot of them, who would say, my primary issue, some would say my sole issue, is cognitive impairment, often called brain fog. So for them, I'm less concerned about fatigue, because that's not a player in their lives necessarily. But for people with a history of significant fatigue and crashes, we want to check and maybe double-check with physicians, we want to monitor, we want to pace. 

And when people have done that, engaged in cognitive rehab, I'm really happy, I'm delighted even to say typically, they get a lot better. And I think it's important because all elements of our body are important, but many people would say, chief among those elements, is my brain, right? You know, if my cognition is working, I can tolerate a lot of other things not working so well. Right? If my cognition is working, if my cognition is working, I can figure out a way to manage at work if my cognition is working. 

So it still is a little bit of a mystery to me, and it's sad I mean, really, that we have some strategies for cognitive impairment, that in brain injured patients have long been viewed as quite successful. And so few people are drinking from the well, so to speak, of rehab. I think it's the best kept secret that the best thing that nobody knows about - cognitive rehab - and I'm trying hard to advocate for it. 

I'm a little like a Johnny one note, which refers to the idea that, you know, you're playing the same note on the piano all the time, you know, you're playing the same song on Spotify. And the song that I play a lot is cognitive rehab, cognitive rehab, cognitive rehab, cognitive rehab, because I think it can be that important.

Jackie Baxter  
You mentioned that it's not always available, or, you know, maybe if it is available, it's got a waiting list, as you know, long as whatever. Is this something that could be done, like remotely, we were talking earlier about, you know, Zoom being like, you know, the greatest invention of the pandemic? So would people maybe be able to access something like that?

Dr James Jackson  
It can be done, it can be done remotely. I think most occupational therapists speech and language pathologist, those are the two main professionals that engage in cognitive rehab. I think most of those are willing and able to do cognitive rehab remotely. So that really helps a great deal, right? Because in rural areas of the country, or rural areas of the world, speech and language pathologists, occupational therapists, they don't grow on trees, right. You can find them in Nashville, you can find them in New York City, you can find them in London, you know, you can't find them in Union City, Tennessee, you know, tiny down down the road from me, I don't know if you can find them in Loch Ness, right? They don't grow on trees. So this is a problem. 

One thing that we do sometimes recommend to patients is a slightly different approach that we have noted can be effective for them. And that is, what you might call brain training, which is a little distinct from cognitive rehabilitation. Brain Training, is trying to take these processes of neuroplasticity that are already at work, or available to be put to work, if you will, and trying to leverage those processes. And typically, brain training is done using computer games, using sometimes proprietary computer programs and software. 

There's a lot of controversy about brain games, whether they work, whether they don't. But I think the evidence in favor of them as an effective therapeutic - that is certainly increasing. And I think it is worth at least exploring really great platforms like something in the United States called Brain HQ, for instance. Those platforms have been shown to work in areas of attentionm in areas of processing speed. 

Another approach that is novel and new, is there are some medications that some researchers believe are effective for cognitive impairment, medications that might be used for ADD or ADHD. And the logic there would be that the symptoms of ADD and ADHD are not necessarily that different than the symptoms occurring in people with brain fog.

Jackie Baxter  
Sure, yeah. And I'll make sure I dropp those links into the show notes as well. So people can follow them up if they're interested. 

Dr James Jackson  
Yeah, thank you. 

Jackie Baxter  
But yeah, yeah, that's, that's fascinating, isn't it? And the fact that you're seeing people improve and even recover, that is, obviously what we want to hear, isn't it?

Dr James Jackson  
It is, it is. And I think, even as we hope for that, and you're living that reality, it sounds like and that's so lovely. And I know many people that are. We're highlighting for people that, you know, long before COVID, there were patients with brain injuries, who went back to work, you know, who went back to pursuing hobbies, who participate in the family. Not all of them, certainly, but many that that can be done right. 

But trying to hack that, as you referenced earlier, without professionals involved, it doesn't get you as far as it might. So connecting with professionals, I think, is really important. I don't know the state of the art in the United Kingdom, in the United States, there are about 195 or maybe 200, long COVID clinics, and we really recommend that that is a great starting point - that people find a long COVID clinic if they can. 

And one benefit I think of that long COVID clinic is often when you're there, A you'll get a diagnosis which is really important. If you have long COVID you'll get a diagnosis and that often is really validating. And B you'll leave with a plan. And I think people are empowered in the context of a plan. They want a plan. And when they have a direction and a plan, they do better.

Jackie Baxter  
Yeah, I mean, you're right. You know, it's, I described myself as flailing to start with, you know, I was trying everything and anything, and all the wrong things. And then once I kind of had a bit more understanding of what it was and what was going on, then it was empowering. Because I was then able to say, right, well, now I have a bit of an idea of what's going on, it gives me a bit of an idea of the things I can look for that might be helpful. And, you know, eventually, you know, hopefully, that leads you in the right direction. 

I would love to touch just briefly on sort of mental health, because I mean this, it's not talked about, I think enough. And I think one of those reasons is because people are worried that if they mention depression, or they mention anxiety, then their doctor is going to turn around to them and say, Oh, well, you're just anxious, it's not long covid, but it's nothing else, you know, and there'll be gaslit all the way back home. 

But, you know, one of one of my soapboxes here is that there are people - myself included - who have genuine anxiety, or who have genuine into depression, you know, as a result of being ill for three years, or however long. And then they both interact with the other, don't they, you know, your anxiety is caused by your illness, but then your anxiety feeds back in and makes your illness worse. So you know, if you could get somebody to actually help you with the mental health thing, then it would actually kind of help. But people are so scared of mentioning it that they don't, and I think this is a real problem.

Dr James Jackson  
I love that comment. And I know you haven't been reading my mail, Jackie, but it feels like you have been, because what people have been saying, and this is what people have been mentioning to me. And I think your comment is really insightful and astute. And that is just as you said that often people will, I would say bravely, right, like, with great reluctance, disclose to their provider, raise their hand, I'm anxious, I'm depressed. And too often the response is, Aha, that proves it. Right. It's just in your head. Right? You just admitted it. 

And I think that response does happen too often. And I think it is incredibly discouraging for people to get that feedback. And when they do, I think some of them, very logically, they make a vow, right. And that vow is - I'm never going to do that again, right? I'm never going to disclose that again. 

So, you know, one of the things that I really urge is, for providers to be much more open to the experience of patients. Not to shame, not to blame, to recognize that you can have both meaningful mental health problems, and meaningful physical problems of many kinds, that we need to really avoid explaining physical symptoms, whatever they are, merely on the basis of mental health, right. 

But too often, that's what happens. And people really retreat. I think there's this incredible stigma that still exists in this mental health space. I know for me, when I was diagnosed with OCD, you know, I told my wife about it, obviously, and maybe a friend or two, that was it. And there were a lot of people really close to me, people who I know love me, who were very accepting of me, would have been, and that was the last thing that I was going to tell them, right, that was a last thing. Over my dead body was I going to disclose this? That's me as a psychologist, right, we should be schooled in these things. 

So people are reluctant to talk. We need to create an environment where people will talk more openly. And one of the reasons is the reason that you alluded, and that is they need to talk openly about these things, because untreated mental health conditions make these physical problems vastly worse, right? And it turns into this vicious cycle, as we say, where one impacts the other, right. The physical symptoms get worse, therefore, you're even more depressed. You're even more depressed, therefore, the physical symptoms get worse, you become more isolated from your sources of support. It's a vicious cycle. 

I would say too, this is parenthetical, but if we could get over using phrases like, "it's just anxiety," that would make me really happy, right? Because for people who have had anxiety, and I've had a few panic attacks in my day, right? I wouldn't choose to put "just" in front of it, right, like anxiety can be profoundly debilitating. It can be terrifying, so can depression. 

So I think we need a referendum, a national conversation really about this. And one thing I've chosen to do, that I think has helped with my patients, and if there are health care providers listening I would encourage them to do the same. I have really chosen during the season and always will, I think now to talk a lot more openly about my mental health with my patients than I ever had before. 

And I think one thing that's valuable about me talking about my own struggle is it gives them permission to talk about theirs. Right? So when I act like, I don't have it together, because I don't have it together, right? And when I act like, you know, I know what it's like to have anxiety because I have anxiety, you know, etcetera, when they understand is one of them said to me in a text recently, Dr. Jackson, it's really lovely to know that you've got some quirks too, I think that bonds us. And it creates an environment where they can take their mask off, so to speak, right, figuratively, share their story, we can connect on a more human level and everything is better when that happens.

Jackie Baxter  
Yeah, absolutely. Because who does have it together? Like, I've never met a single person that has it together.

Dr James Jackson  
Exactly, exactly. I think in some professions, unfortunately, there's quite a pressure to make it appear that you do, right. And I think we need to move past that. You know, there's always a struggle when I use the word grateful, in the context of this pandemic season, because the season has been so horrible. It's been, you know, an unmitigated, challenging, awful season. 

And I'm grateful that one thing that has happened is, I do think the pandemic has brought conversations about mental health to the foreground, much more than they were in the foreground before. And I think some people at least, are much more open about disclosing than they used to be. I look for the day when all of us will be willing to, again, figuratively take our masks off. We're not there yet. But I do think we're getting there.

Jackie Baxter  
Yeah, yeah, definitely. Well, thank you so much for joining me tonight. It's been so fascinating and really lovely speaking to you. I feel like I have learned so much. I will make sure I dropp the link to your book into the show notes because that is absolutely worth a read. And yeah, so thank you so much for giving up your time to chat with me.

Dr James Jackson  
That'd be lovely. Thank you. Thank you.

Transcribed by https://otter.ai