Brooke 00:00:23 - 00:00:49
Hello and welcome to another edition of Brain Injury Bites. Really good episode for you today - we've actually got my treating OT from back in 2008/9/10, was it? A long time ago! Anyway, Julie Meigan. Obviously, I know Julie but this is first time I've seen her in about 10 years, all be it digitally! But for the benefit of everybody else, would you like to explain who you are and what you do, Julie?
Julie 00:00:49 - 00:01:22
Hi, everyone. Hi, Brooke. It's absolutely lovely to see you again after 10 or 11 years. My name's Julie Meigan. I'm a specialist brain injury occupational therapist and I had the pleasure of working with Brooke about 11 years ago, I believe.
So, my job is really the best job in the world because I get to support people after a brain injury in order to be able to be more independent, to have a good quality of life, and basically just to get back to being and doing all of the things that are important to them.
Ashwini 00:01:22 - 00:01:48
That's super. I think that's actually a really succinct summary and was kind of the answer to my next question or one of my questions anyway, because well, no, I think we can expand on this. So, I think it would be helpful to just kind of explain what occupational therapy actually is and dispel the myth that it's just arts and crafts and playing around with scissors and stuff. What is it that occupational therapists do with their clients?
Julie 00:01:48 - 00:03:24
Oh so that's such a massive question. So yes, when I started OT, the myth was that we were bunny stuffers or basket weavers was another one. And that certainly comes from that arts and crafts background, where people would sit around a table and do activities and certainly that has a place in sort of the fundamentals of what OT is because we believe that purposeful activity is very therapeutic and is actually essential for people's well-being.
So how that's evolved over the years is that occupational therapists look to develop independent living skills and quality of life in people who have, for some reason, difficulties with activities. So it could be that after an injury or illness or it could be that the environment itself is just not suitable for or productive for the things they want to do.
So what OTs look at really is the barriers as to why somebody can't do the things that they want to do and start to break that down into components. So it could be a physical problem, it could be thinking or cognitive issue or it could be an emotional problem or it could be the environment itself is just not conducive to that to that activity. And then what we do is try and make changes, write that down into smaller goals and build up from there so that eventually hopefully the individual can reach their goals.
I think what OTs are really good at is working very closely with the person involved and really keen on client centered goals. So we don't set goals for people that aren’t important to themselves, really.
Ashwini 00:03:24 - 00:03:43
Yeah, but I suppose that's the thing if you want to achieve something, you have to be invested in it so there's no point the therapist setting the goals and going right, this is what you need to achieve. The individual themselves need to want to get there and it has to be important to them to buy into the process.
Julie 00:03:43 - 00:04:04
Absolutely, it has to be meaningful. Otherwise, like you said, it's really hard to engage somebody who has no interest. It's the same for any of us, isn't it? You know, we talked a little bit when we were just setting up about Brooke running the Great North Run, congratulations on your place Brooke!
Brooke 00:04:04 - 00:04:07
Congratulate me when I’ve done it!
Julie 00:04:07 - 00:04:55
Yeah, but because I'm not motivated to do that, I'm not going get up every morning and train. If I was motivated to do that, I would be able to set that as a goal and I will be able to put in place all of the little stages that build up that big goal. So, for Brooke I imagine he's going to be going out on a few early morning runs for a couple of kilometers and then building up the length and building up the distance and that's how he's going to achieve that final goal.
And that's the same really with any goal, it's just about breaking it down into the small steps and taking that first step. And OTs are there to sort of break that down for people and to then support them to take that first step in a very safe, graded way. But there's, you know, gradually help people to sort of move slightly outside their comfort zone, but still with that safe structure there.
Ashwini 00:04:55 - 00:05:09
I guess that that's really important, isn't it, that it's safe and graded, that you're not sort doing too much too quickly, setting yourself up to fail and then taking, you know, taking that one step forward and about 20 steps back.
Julie 00:05:09 - 00:06:15
Yes, absolutely and that's really demoralizing and again, that's you know, examples of that within everybody's lives, really, where you set a goal that's just sort of unrealistic. And that's the other thing that OTs are really, really eager to do with clients. So it's important that the client goals are their goals, but also that they help to make that realistic and it could be just about taking that first step to that. So if you think of, you know, again the goal about the run and you know you're not just going be able to go out and run half a marathon, although that might be the ultimate goal that needs to be to be smaller goals. So your first month's goal might be running 2½k.
So it's really important that we help people to understand the barriers and to understand some of the difficulties, but also set the smaller goals, because then when you achieve that goal, you feel really motivated and engaged and that really helps propel the momentum. It’s really important.
It's like you said, if you set a goal that's too difficult and then immediately fail, that's really demoralising and demotivating, which is the opposite of what we want to happen in a rehab setting.
Ashwini 00:06:15 - 00:06:27
Yeah, and particularly where with brain injury, you might already have problems with motivation and, you know, planning and execution. So it's I guess, it's important to make sure that those steps are manageable and achievable.
Brooke 00:06:27 - 00:06:38
Do you have to deal with a lot of people who obviously think they’re better than they are? Which I think was certainly the case in with me. I didn't realise or I didn't want to admit the things that held me back.
Julie 00:06:38 - 00:07:39
Yes, absolutely. It’s a common thread when you work with people who've had a brain injury, that insight can be can be a tricky issue and that people don't always see some of the difficulties that they've got and maybe do set themselves slightly unrealistic goals because of that, but that's also part of the therapy process working together to gently provide that feedback so that people can get that awareness and insight because that helps you then to use the tools that you need to achieve your goals. If you don't know that there's anything that can be helped, then you're not going to take on board advice and strategies.
So it is important that you're able to work together, to have that relationship, that trusting relationship where you can give honest feedback. But again, in that really safe, graded way that that so that you know you still feel like you're progressing and not demoralising. But yeah, you're absolutely right Brooke, insights are a real difficulty sometimes.
Brooke 00:07:39 - 00:08:04
Do you find that some people like actually never get it back? Like, sometimes, I think, what are we 15/16 years now I don’t think I fully… I would say I'm 95% there, but I still think I can do more than I actually can. But I think that pushed me to do things in some ways that I would never otherwise do, so I think it can be good and a bad thing in some ways.
Julie 00:08:04 - 00:08:34
I think you've answered that question far better than I can Brooke because I work with people for possibly a couple of years and then usually our sessions will come to an end and then that person carries on their journey without me.
And that's really interesting to hear that even, you know, after a couple of years of therapy that you're still learning things about yourself and still learning some of the strengths and difficulties. So I think you've answered that question perfectly to be honest, I couldn’t answer any better!
Ashwini 00:08:34 - 00:09:28
So I think it would be helpful to kind of think about some of the specific areas in which brain injury affects somebody's ability to carry out things like activities of daily living and just general independent living tasks and how you work with those issues. You know, the sort of goals that you set or the steps that you look at to help people along the way and in gaining, or regaining rather, that independence. I mean we've talked about through the series we've talked about different issues such as you know, organisation, planning, execution, memory problems, fatigue and I guess with all of those there are lots of different ways in which you can work with your clients to help them get to where they need to be. I mean, do you want to sort of talk us through some of the strategies that you would use in those areas?
Julie 00:09:28 - 00:13:17
Absolutely. I think the thing that all teams do is use function really as the main strategy and the main treatment plan. So rather than writing a goal around an impairment such as difficulty with organising or planning, we would look at what actually does that stop that person doing that they want to do and again bringing it back to that client centered goal. So, for example, if we were talking about fatigue management, which is it is a huge goal for most people following a brain injury or a lot of people following a brain injury. And we would look at what it was that that person wanted to do that fatigue was stopping.
So, I had a client who wanted to sit in the garden with her husband and listen to the birds on an early evening but she was so sleepy and tired that she was in bed really early. So her goal was to be able to stay up till 9:00, which is the real sort of functional goal. You know when you've achieved it, then obviously what we had to do was break that down into smaller steps and to really analyse what was happening in that day to stop, to prevent that lady from achieving that goal.
So really, no matter what the impairment, the important thing is to think about what the actual goal is for the client. And then obviously within that analysing the difficulties and the strength which is really important. It's not all looking at negatives, it's what can that person do that can be helped with the things that aren't so easy. And then, you know, there's lots of strategies OTs really love. You know, what we try to do is give people the tools to be able to help themselves and to learn how to manage impairments as they arise, so it really depends on what we're talking about.
I mean in preparation I wrote a list and I thought right what is it that I do? What does what's the most common things? And I actually just sort of ran out of paper because, you know, we do, you know, washing and dressing, being able to shampoo your hair, being able to blowdry your hair, cooking, meal planning, planning your week, remembering appointments, medication, going back to college, going back to work, sleep, managing fatigue and all of these things have so many elements to them. You know, there's a physical element to everything you do, you know, sort of moving our limbs, being able to coordinate, having strength and dexterity, and also sort of how we plan a task, how we actually initiate it in the first place, how we get up off the chair and start to do our daily things. How we self monitor, you know, how do we know we're doing a good job? How do we know we've made mistakes? How do we know if we've finished the task and then obviously the emotional aspect of tasks. You know if they interest us, if they upset us, if we're anxious, if we're worried.
So all of these things, in every single goal is something that we would analyse and then look at the first step to that and then start building in strategies to help people to get to that first step. So if it was things like weekly planning, you know we would look at helping the client with a diary and in a paper planner and really looking to see where we can put appointments in at the best times, asking clients to review the things like white boards. We just use so many different strategies and it really, really depends on the client and the client's interests and how they adapt to what you suggesting. Some clients really love sort of a physical paper. You know, this is what I do, this is what I need to do in this situation. Other clients really like just to practice the physical and practice it in a session over and over again until that's you know, that's sort of reinforced as their strategy.
Brooke 00:13:17 - 00:13:44
One thing I've come back to recently is what we used to do about the, you know, planning like the meals of the week, what you’re going to eat throughout the week, Monday, Tuesday, Wednesday, Thursday, Friday and you write down what you get for breakfast, your lunch, your dinner.
You then put that on a piece of paper and you'd go out and buy shopping accordingly. So you didn't like, buy too much stuff and, you know, walk around the supermarket and grab random things and end up with loads of stuff left in the fridge at the end of it.
Julie 00:13:44 - 00:14:09
And that's such a good example Brooke because yeah, because also some people might just go to the supermarket without a list or without a plan and buy lots of items that don't necessarily go together for a meal and then sort of come home and think “I've got nothing to eat”. So being able to do that planning before you go to the supermarket is really important and it guides the shopping list but also it guides kind of your route through the supermarket as well.
Brooke 00:14:09 - 00:14:22
We used to do that. We used to plan, I think it was Tesco in Scarborough, wasn't it? Most supermarkets, fruit and veg first and then there's tins and then there's fresh stuff and plan your plan your journey so you're not snaking around the supermarket and missing stuff.
Ashwini 00:14:22 - 00:14:25
Ok, so setting out your list in accordance with the order you go around, ah OK, yeah.
Brooke 00:14:25 - 00:14:25
Julie 00:14:25 - 00:14:43
So that really helps you with route find and attention, and also sort of limits impulsivity. So some people find it really hard not to buy everything that they want. They might be on a tight budget or it might just be that they buy quite a lot of food that then goes to waste.
Brooke 00:14:43 - 00:14:50
Bags of salad. But that’s a problem with everyone I think isn’t it, bags of salad?
Julie 00:14:50 - 00:15:25
Yeah, bags of salad, always in the bottom of the bin, yeah.
So that's a really good example, again Brooke, of things that we did together that was really helpful in terms of maintaining your attention and impulsivity, making sure as well that you weren't spending too long in the supermarket because it can be quite a tiring environment. I hope you don't mind me saying this Brooke, but one of the things we really worked on together was fatigue management. That's what I remember we spent a lot of time working. And supermarkets and places like that can be really fatiguing for people after a brain injury because they're very busy with people.
Brooke 00:15:25 - 00:15:41
One thing that people like who don't have a head injury, don't get, how a supermarket can tire you out because you've got like the bright lights, you've got the noise, you know, you've got music in the supermarket and then you know, if you meet somebody and that can totally send you off track.
Julie 00:15:41 - 00:16:34
And if you think that some people, after brain injury have problems with information processing, so if you think about a supermarket, it's a really overwhelming situation to be in, in terms of the information that’s flooding in. So you've got lots of people coming at you from all angles. You've got so many products on the shelves, you've got usually some music jangling away as well, and people chattering and also you're trying to concentrate and think about the things that you need to get on with as well. So I think that's a great example.
And so something like a meal planner and a shopping list, as well as making sure you've got food which is really important, actually then it really helps with fatigue management because it means you're going to stick to that task, you're going to get round the supermarket in the length of time that it needs to take and you can spend your energy on other things in the day that are more interesting than the Tesco shop.
Ashwini 00:16:34 - 00:16:54
I just wanted to come back to the example you gave before and obviously without breaching any kind of confidence, but you spoke about the lady who wanted to sit in her garden, like at 9:00 with her husband. Did she manage to achieve that goal? And if so, what were the sort of steps that you identified? What was kind of the process to get her there?
Julie 00:16:54 - 00:17:26
So yes, she did achieve that goal, and it's a lot of the time it's a little bit of investigation between yourself and the client to sort of build up a picture of somebody's day and all of the things that they're doing in that day. So in that situation, the person really struggled to sleep, so that meant that her whole sleep pattern affected what else happened in the day. So for example, if she was awake late into the night she would then over sleep the next day and then she would wake up tired. And then she would struggle to sleep.
Brooke 00:17:26 - 00:17:29
Sounds the story in my life that!
Julie 00:17:29 - 00:18:30
Well, yes and that's really sort of not the sleep advice that's thought to be the best now. So she would sleep for extended periods during the day and quite late into the day. And really what was happening was just her energy levels and fatigue levels were not consistent. So what we really try to do is get a really consistent sleep and wake cycle. You know, setting someone a goal of going to bed at whatever time you know seems reasonable and building that up and then looking at what happens in the day and trying to eliminate long sleeps. So you can sort of incorporate in small rest periods throughout the day before, say 2:00 PM to try and sort of manage that fatigue without the extended times in bed.
So really fatigue management it’s… I could do the whole podcast just on fatigue management in all honesty! But basically you know your 3Ps - you need to plan, to pace your activities, to prioritise your activities.
Ashwini 00:18:30 - 00:18:31
I'm writing this down!
Julie 00:18:31 - 00:19:28
Ohh well yeah. Honestly, fatigue management is a separate podcast. The three Ps. And it's really looking at everything that happens in that day and it’s so complicated. It's, you know, do people take medication? Are they in pain? What's their sleep hygiene like? Do they drink a lot of caffeine? Do they drink alcohol before bed? Do they eat a meal before bed? Is their bedroom comfortable? Is the room dark and cool? There's basics in sleep hygiene that some people just don't realise are so important and fundamental to their sleep.
And it's only following something like a brain injury that it becomes really apparent because sleep is so important. And you know that's when we start to look really closely at sleep hygiene. It's something that we don't really, you know, actually quite recently there's been quite a lot of interest in it, hasn't there, about sleep hygiene and the importance of sleep and for everybody sleep is so important and making sure that you get your 8 hours or whatever's recommended.
Ashwini 00:19:28 - 00:19:29
Oh dear, I think I’m running on five!
Brooke 00:19:29 - 00:19:48
8 hours would be lovely, but yeah. It was something that used to obviously happened so naturally. One thing I had no problem with was sleep until I had this injury and it became the bane of my life. People used and you used to get people giving you advice like you sleep through the day and you don't sleep well at night.
Julie 00:19:48 - 00:19:58
Yeah. So the thinking is if you have a long sleep during the day, then that's going to stop you falling asleep easily at night. It's going to affect your nighttime sleep.
Brooke 00:19:58 - 00:20:24
It's something that I've had to put in place, like make myself - no sleep, probably 3:00 is my limit. No caffeine after 12:00. And that's something I've stuck to and honestly, I still now, I notice that if I do have like, you when, in the night, when you're awake at 4:00 in the morning and you like start going through your day - Oh yeah, I had a cup of coffee at 2:00, and that's, I don't know if it's exactly 12, but it's just it seems to be a safe offering.
Ashwini 00:20:24 - 00:20:38
I guess a lot of it is probably like trial and error, isn't it? Like you probably have to work out over a period of time that actually if I sleep during the day at a certain point, I'm not going to get sleep at night or if I have coffee at this time, I'm not going get to sleep at night and wake up.
Brooke 00:20:38 - 00:20:56
The problem the problem with trial and error though is like if you go to bed and rest at like 3:00 one day, and it affects your sleep on the night. Then the next night you've probably forgotten about 3:00 the next day. That's why writing down is so valuable.
Julie 00:20:56 - 00:21:33
It is and that's why you also need a good OT, because that's part of a really good sleep program Brooke, where it is in a way, trial and error. But what's important is that you try one aspect at a time and see if it makes a difference. For example, not everybody's going to want to go to bed at 10:00, so it's no good just giving blanket advice - everybody goes to bed at 10:00 - so we can give general advice on things like caffeine, probably 2:00.PM is probably the best time to have your last coffee and no sleep over 45 minutes.
But then what's important is to work with the person to say, OK, what's going to work for you and what do you want to try first.
Brooke 00:21:33 - 00:21:36
No more than 3 cups of coffee in a day as well.
Julie 00:21:36 - 00:23:29
I can only do 2. That's what I've learned and a colleague once gave me a can of Pepsi Max and told me there was no caffeine in it and I drank it about 8:00 at night and stared at the ceiling all evening. So you know, so I’ve learned that lesson the hard way that Pepsi Max certainly does have caffeine in!
So yes, what we would do, I mean for example Brooke. I don't know if you remember but the first thing we did was set a specific bedtime and wake time and agreed between us that we would create this sort of experiment and that if Brooke got up at for example at 8:00 every day, even if he felt he hadn't slept well, and then we would review that in the next session. And I think that's the important part that you get that review process because it is so difficult to keep changing aspects and you’ve got to remember that if I'm involved in looking at your sleep, it's because there's a problem with it. It's because it needs, you know, it needs addressing. And it's about untangling all of those different threads of why that sleep's gone wrong and trying to help with that. And you can't just change everything at once because it's too big. So it's about saying what's reasonable to try first and then if you try something that you've got a pretty good success rate at, then it's much more likely that you're going to put the next step in place and the next step on place and then the next step in place.
And the other thing to say is that you know with sleep it is really complex and fatigue after brain injury is different to what we would describe as, you know, feeling tired, I'll go to bed, I'll wake up, I'll feel refreshed, Brooke would describe times when he felt really fatigued and really felt like the shutters had just come down and he felt ill. It wasn't a case of just feeling tired, it was a feeling of I've stopped, I've shut down and then that might actually go on for more than one day so it wouldn't be that one night’s sleep was enough to completely recharge the battery. It would kind of have a hangover effect for a couple of days.
Brooke 00:23:29 - 00:23:41
That was one thing it took me a while to get used to like before that if you went to bed, it would just totally reset everything. But the fact that it didn't, and it would carry into the next day, you're absolutely right there.
Julie 00:23:41 - 00:25:00
That’s why your three Ps are really, really important because once you know that about yourselves, because what I always say to people about… fatigue management isn't about stopping you doing things, it's about allowing you to do more things. But it might mean that you have to shift the times that you do them. So the three Ps, you need to plan out what it is that you want to do. So you know, if Brooke said to me, well, I want to go to the pub quiz, I want to have like a couple of pints, but I know I'm going be absolutely wiped for two days, but it's really important to me. Then we would look at the weekly planner and say well look if that happens there what happens the day before? Oh, well I could have a quiet day. So you could actually sort of save up a little, you know, not do anything too strenuous so that your fatigue levels are quite good by the time you get to that place. And then what’s the next day look like? Can we have an easy day that day? Are there jobs that you need to do that aren’t going to have a high fatigue cost?
And again, that's the pacing element. And then the last P, the prioritise and what needs to be done. What can be delegated, what can be left to another time. So it’s really helping somebody have an overview of the whole week so that the important parts get the focus and that's one of the important things that I know I worked with Brooke on with fatigue management. And I think at the time you were at college as well Brooke?
Brooke 00:25:00 - 00:25:03
I started that fitness course didn’t I, at college.
Julie 00:25:03 - 00:25:22
Which was really fatigue and you think about all that new learning and meeting new people and having sort of, you know, the cognitive aspect of learning new information, but also the emotional of meeting new people and physical having to get to college, get up out of bed and get to college, it was a big ask.
Brooke 00:25:22 - 00:25:50
I went to college and I did a level two gym instructors course I did. It was one day a week, but it was a full day a week. So my dad used to have this camper van and he’d give us a lift to college in the camper van. He took his bike in the back of it and he used to he used to cycle home and he left me with the car keys. And on the lunch time, I’d go in the camper van and I get my head down for half an hour and have my lunch in there.
Julie 00:25:50 - 00:26:01
I remember that and it worked really well, didn't it, because you kind of needed to be away from people who were going to chatter to you and you know, ask ‘what’ve you got for lunch’ and ‘how did you find that’. You kind of needed the quiet.
Brooke 00:26:01 - 00:27:14
And at break times, they gave me like, let me go in a dark room and just shut my eyes. But it's just like, not everybody knows that much about brain injury, especially fatigue management, so there was people just walking in and they're like, Oh my God, who’s this strange guy sat in the middle of the room like that, getting 40 winks. But yeah, it's been, fatigue has been absolutely the worst thing I've suffered with.
Going back to what you said about, you know, it carrying on. One thing that, well I haven't done it for a while, but I probably still would do is if I have like a particularly fatiguing day like I used to write myself a note for the next morning to read on my bedside table that I'm going to be tired. Quite often, I'd completely forget what I've done the next day, especially if I'd done something quite strenuous, it would like totally wipe my memory. I'd wake up and I'd just be absolutely exhausted and that would lead into a real morning of depression. So if I read the note that I was probably I was going to be exhausted, I was going to be a bit depressed and then, you know, planned some light activities to do on that morning and that really helped. Preparation – one of the three Ps!
Julie 00:27:14 - 00:29:12
Yeah, absolutely. And that's absolutely great, a great example of how you've sort of taken the strategies we used to use and adapted them over time because what we would have done is written out a weekly planner and said OK, that's going to be a tiring day. So you know when you look at this planner all week that that's coming up and what you're going to do the next day. So you obviously don't need that level of planning now, but that little post it note is just enough to remind you that it's OK, you're going to feel fatigued today. Just take it easy and don't let it, you know, don't let it affect your mood because the next day is going to be different again. So that's a lovely example of how you’ve adaptive strategies and made them your own.
And I think the other thing to remember about fatigue is it's so important because it affects so many other areas of your life. So once you get to a level of fatigue, all your other impairments will become worse. So when you’re fatigued, your memory will be worse, your attention will be worse, and one of the things we really try to help people understand their symptoms of fatigue. So a lot of people don't know that they get fatigued until they reach a level where actually it's gone a little bit too far. So, if you can recognise those little symptoms of fatigue, I call them like Poker tells, everybody has a tell. So for some people let’s say they blink or they learn yawn for some people they just, you just notice that they're not paying attention or they might ask you know, ‘sorry, what did you say there?’
And it's really important that you sort of have that knowledge about yourself because if you can at that point say ‘ohh, OK yeah, I recognise this. I need to go off and have 10 minutes in a dark room or 10 minutes just looking out the window’, then you're more likely to come back to that activity and have enough energy to get it done.
What we don't want is people to go past the point of no return.
Brooke 00:29:12 - 00:29:15
I can totally relate to that, the point of no return, yeah.
Julie 00:29:15 - 00:29:30
We used to talk about this Brooke, all the time - we used to call it being boom and bust. You know, you're doing something, you're writing an assignment, and I don't want to stop Julie because I'm in the flow, I'm in the zone. And yes, I'm tired. And yes, I'm feeling myself getting really fatigued but I'm going to finish, I'm going to finish and then in bed for two days, assignment doesn't get finished.
Brooke 00:29:30 - 00:29:33
And you go too far, yeah.
Julie 00:29:33 - 00:29:42
So it's really important, sort of that recognition of oh, yeah, this is where I need to stop and have a rest. It actually helps you be more productive in the long run.
Brooke 00:29:42 - 00:30:13
I've always equated myself to like a mobile phone in that you if you keep plugging yourself in, as in for a short period of time, it makes your battery keep going. But if I let my battery go to the bottom, then it you can't just plug it back in. You have to wait like 10 minutes for it to go again. Fatigue is more of an extreme version of that. Like if I totally exhaust myself then it takes me like a couple of days to get back on track. Whereas if I keep myself on that level with, you know, with short rests, then I can keep going.
Julie 00:30:13 - 00:30:29
That's a great analogy, and it is, you're right. It's an analogy we use quite a lot because if you let your phone run out of charge, it is unusable. It does not work. Whereas if you keep it topped, you've always got a phone. So it’s exactly the same principle, you’re right, yeah.