Ashwini 00:00:23 - 00:00:40
You must come across patients who have really high expectations of where they want their recovery to go or you know, wanting to get back to exactly how they were beforehand. And it must be very difficult or challenging to manage those expectations. How do you go about that?
Russell 00:00:40 - 00:02:11
Brooke we used the word acceptance before. Acceptance is a fairly complicated term, but commonly think of acceptance as almost like put up and shut up, this is the way it is, just get on with it. But acceptance can almost be a release as well. It's like I know what I'm dealing with now and because I'm fully aware of the difficulties which might go that, I'm in a better position to adapt, to change, to modify and still move forward, and that's the work that we try and do with patients who often say, I just want to be back to how I was.
Usually the breakthroughs in terms of speeding up their recovery comes, this will sound quite cruel, at the point when they realise I'm not going to be like I was, life has changed. But if we've got the support right, if we've involved family, loved ones, services in letting them know we're here to help you move forward from this position and build up a satisfying, fulfilling, happy life, hopefully we can take some of that pain away.
But we've talked about grief before, haven't we, and the analogy extends there with grief. There’s an evitable sadness, isn’t there? We have lost a loved one. We cannot have bereavement counselling with the intention of just feeling happy all the time. There is a sadness about what has happened.
Ashwini 00:02:11 - 00:02:47
And it's a loss of identity. It's such an intrinsic part to somebody's self being, so it must be quite a process to manage. You mentioned the family as well. And I mean obviously and I think we've spoken about this before in terms of, you know, how family and friends can play a role in people's recovery. But how do you involve them as a clinician? What sort of things do you have friends and family doing with you or with your guidance to promote somebody's recovery?
Russell 00:02:47 - 00:05:19
Obviously, it always has to be with the patient, the person’s permission to involve family, but once we've identified that we need a team approach and family, loved ones, friends are part of the team to support this person, it really depends what the person's problems are. But let's say there are cognitive problems, so problems in processing information and thinking, and as a result of an assessment we've worked out that the person's memory problems are affected by their distractibility. So, they've struggled to pay attention and typically this is a mental function that we take for granted.
You think about times when you might be in a crowded room, say it's a party. There's lots of chatter going around, but you’re speaking to one person, your brain automatically is registering there's noise going around, but it filters that out so that you're concentrating on what the person is saying to you. Well, sometimes after an acquired brain injury those filters aren't working, so everything's crowding in on the person and is very overwhelming. So if we've assessed that to be a problem and this person’s struggling in busy family life, we have to work with that family to say, if you've got important communication, let's work out how that communication is given - What environment is it in?
So let's say for example it's a couple with several young children. If the partner, the person with the acquired brain injury has to communicate some important information, let's not do it at a time when you've got the three kids bouncing up and down, wanting to tell you about XY and Z simultaneously, because the person won’t cope with that. So some of it will be helping the family member understand the nature of their cognitive difficulties and set up an environment which helps the person to overcome those difficulties or function better should I say.
It might be that there's work to be done on changes in behaviour, so if a person’s more irritable or short tempered it’s to help the family and ask why that's happening? Maybe they're overwhelmed. Maybe they're sleep deprived, help them not to take it personally, but prompt them to do certain things which might help them calm down or feel, you know, you don't need to be threatened by me here. I'm here for you, reassure you and then hopefully.
Brooke 00:05:22 - 00:06:13
I can massively relate to that, especially in conversations. Obviously you can get overwhelmed by the noise in the room, the poor lighting and you know, the other conversations going on around you. I would just add to that that one thing that used to go through my head is that like people find me boring, they're getting bored of you, leave this person alone. And then you kind of make excuses to get out of the out of the conversation as quickly as possible. That's when my confidence was really at my lowest.
I’d say one thing I've learned to do is to make the situation ideal. Like, if you're going have a conversation, make sure it's in, like a quiet room. Unfortunately, what I wanted be, was I wanted to be back as a young person back in nightclubs and stuff, but the best possible environment for me would have been like Tuesday afternoon in a well lit coffee shop.
Russell 00:06:13 - 00:06:38
But that's learning about yourself, isn't it? That's a brilliant example of the accepting this is the way things are and adapting and realising well, I can still enjoy myself, I can still socialise, can still have a good time. I just have to do it in a slightly different way now so that is a brilliant example of what I was talking about there. Our role for some people is to help them accept and adapt and building those up in different ways.
Brooke 00:06:38 - 00:07:26
I would continue to do these things like put myself in those situations with such as, like, you know, late night bars or whatever. And I would continue to just make me exhausted and when I used to get so tired, especially when you mentioned those exercises where you counting the number of the, the word the is written. I remember the tiredness I used to get from that. It's like it's like a headache and you just used to get this fatigue, tiredness. It was just like an exhaustion that I've never, ever experienced before. Touch wood, it doesn't happen as much now. I mean it can be under very specific circumstances, but it was something that I've really had to do a few times before I realised that this is not working for me. Like you said, socialise in a different way and I think it’s so helpful to have somebody who understands.
Ashwini 00:07:26 - 00:08:21
I guess it’s educating your friends and family; I can't cope with what I used to do and coming back to the grief point
and working with families. I guess it's also, you know, a lot of them will be going through the same sort of grief, like losing the person that was and then adapting to the person that is now. Working with them, trying to find ways to come up with those strategies, as you've mentioned, for example, how to present information but at the same time, you know, realising that we're dealing with somebody who has changed and isn't likely to go back to 100% how they were before and that that can be tough, particularly I think we've spoken about this in previous episodes, particularly in relationships. You know it's a very different person to who they were before and that can be such a huge losson both sides.
Brooke 00:08:21 - 00:08:48
You can just become obsessed with yeah, obsessed with the person who you were before you will be fine. You can look through rose tinted glasses, can’t you and you just think I want to be that person. But you don't realise that what's actually happening now is your life’s not necessarily stopping, it's taking a different turn and other option can open up for you and other doors can open up and if you look in a positive way, it doesn't have to be all negative.
Russell 00:08:48 - 00:10:13
But it's an important concept you're both touching on there, which we call post traumatic growth. So obviously we're all very familiar with the concept of post traumatic stress and all the negatives, which come with a traumatic experience, but we're beginning to understand a little bit more about some of the developments, the positives which can come out of trauma, you know, greater insight, different priorities in life, different degrees of ambition for some people, better quality relationship because people have gone through a reevaluation of what's important to them in life and it's a topic which is a bit sensitive cause when people really are struggling in the early days, they probably don't want to hear somebody saying ohh, you know, these areas will improve and in some ways, you’ll be grateful for these changes in your life. They’re not feeling it at that stage and you can't expect them to.
But for some people you've just got to be alert to the fact that it can be happening. And I think when it does, we have to acknowledge it. We have to celebrate it. Like I mentioned before, there's great inspiration in some of these situations for a lot of people, and for a lot of tragedy and difficulty obviously. But I think it's important to be open minded to some of the developments and the positive changes which can come out of certain situations.
Ashwini 00:10:13 - 00:10:39
And I guess also celebrating those positive changes, the milestones, however small they may be, celebrating those successes can then sort of, I guess create a more positive recovery journey because you can see the progress as it goes through. It's not about you know, running that marathon straight away. It is those small steps and it's like your one minute, 2 minute, 5 minute film thing.
Brooke 00:10:39 - 00:11:12
Acknowledging it as well, because one thing you do have is you have poor memory now and you just don't realise how far you've come on because you know you see yourself every day and you just forget it, don't you? I remember if I'd seen somebody that hadn't seen for like, say, six months, then that they would, well, this is in the early stages, they would say how much better I was and how much they’d noticed I’d improved. But if you just do it, you see yourself each day, you just you just don't see that there's any improvement at all.
Russell 00:11:12 - 00:12:11
And one exercise I encourage people to do sometimes with the help of family and friends is to keep a diary with their progress. If you're working, for example on memory function or concentration, typically what people will do, especially early stages, is compare themselves how they are now, but with the neurological condition to how they were before they had the trauma or became ill.
And with this diary, we said, OK, compare yourself how you are now to how you were just after you became ill or had the accident and then compare yourself to how you were couple of weeks ago. So you’ve always got this awareness. Ohh no, things are moving. It might be tortoise pace, but hey, it's moving in the right direction.
And that's a really useful exercise to do and it's nice for families to get involved in that as well because like you mentioned, the family are going through their own grief but for them to see actually things can get better.
Ashwini 00:12:11 - 00:12:51
It's a very interesting perspective. It's a different way of looking at it. I guess because if you're comparing yourself to how you were pre trauma pre, whatever the incident was before the incident before the trauma you were up there and now you're perhaps down here and it's like that massive mountain to get to. Whereas if you kind of start almost from the bottom of post trauma, this is where you were and then this is where you are now and you know, look at all this space that you've grown just in that short time it's just reframing the narrative in a way and getting people to look at things more positively, I find that really interesting.
Brooke 00:12:51 - 00:13:22
Somebody said to me once that I should video myself and I really wish I had have done. But you're just, you're always thinking that you're as recovered as you're going to get. But to record myself, you know, record myself speaking because my mouth used to lean. Well, I guess I used to be weaker on one side. But I used to speak appallingly and I used to stammer, I used to stutter and I really wish I had some sort of recording of those times.
Russell 00:13:22 - 00:13:43
But Brooke, you're aware of it and you know in some ways, because you've worked so hard on this recovery, you if you like, you've got your mental trace of how things have gone for you because of the amount of effort you have put into overcome these difficult, it's been phenomenal.
I remember those days well, you know, sat in the decrepit office in the old part of the building...
Brooke 00:13:43 - 00:13:59
I was going to say that old office. I always remember going up the stairs in quite a stressed state and then I would always come back quite happy. The trip down the stairs was always happier than the trip up, so credit to you, Russell.
Ashwini 00:13:59 - 00:14:00
Sign of a job well done
Russell 00:14:00 - 00:14:27
But some of those sessions, you could only manage about 10 minutes of me. But there are many people who might say, yeah, 10 minutes of you Russell is more than enough! But in terms of your fatigue and your ability to think through what we were talking about. Some of those early sessions were very limited weren’t they? But again, with building up stamina, you managed to do them, just.
Brooke 00:14:27 - 00:14:41
There's always this big picture in your waiting room. And it said something like ‘don't look back, you're not going that way.’ I thought that was really good.
Ashwini 00:14:41 - 00:15:04
I'd like to sort of go on a slightly different tack, if I may. I just want to talk about some of the different tests that you do when you first start working with somebody. What those tests are, what kind of information they give you. Appreciate you can't necessarily go into too much detail about some of them because of the nature of the tests, but you know how that feeds into your planning then for somebody's rehabilitation pathway and also just the kind of any tips you might have for anybody who is about to undergo a neuropsychological test battery because they can be quite intensive.
Russell 00:15:14 - 00:19:14
Our assessment process, first of all, people always meet a qualified clinician who will interview them, perhaps with relatives, people who know them all around. And they'll have full medical history as well, so we know quite a bit about the person, what they've been through before we meet with them. And then we'll sit them down and have an hour or so with them talking about how they feel, what problems they have, and through that we're observing certain things like we'll be making observations about their memory for names, for example, their confidence in speech, do they have any word finding problems, whether they are struggling to understand some of the questions we're asking, we’re getting a measure of their comprehension.
Those things that we're observing during interview and based on what we know about their condition, our initial observations, and what we find out in. Interview, we'll then come up with a fuller assessment plan.
So typical areas of cognition that we would be looking at are concentration and attention, so is a person distractible, are they easily knocked off course, can they attend to a couple of things at the same time. We will be looking at memory and memory is a very complex phenomenon, so we've got short term and long term memory, we’ve got visual and verbal and auditory memory. You've got recognition memory. So if you recognise something, it shows the information's gone in there you just struggled to get it out spontaneously or free recall memory, so I've introduced a lot of complex concepts there, but I just want to get across that assessing somebody's memory will involve several tests so that we work out where is the breakdown for them. And then we look into what we call the executive functions. So these are functions of the frontal lobes of the brain involved in problem solving, abstract thinking, creativity, a whole range of analytical, mainly problem solving based functions and we've got tests for each of these areas and we've got test for language function and test for visuospatial functioning as well.
So without wanting to go into too much detail, a typical concentration and attention task might be getting somebody to listen to a series of beeps and we're asking them simply to listen to this string of beeps and count how many there are and then, because we’re pushing people a bit and perhaps a little bit cheeky, bit naughty with people we'll introduce a distraction so I want you to count this beep but ignore this other one that's a different pitch, it might be a higher pitch. So then we think can they distract themselves from other things or does that overwhelm them. So that might be one concentration and attention task.
Examples of memory tests might be lists of words that we get people to hear, and then they have to repeat back as many as they can remember. And we do this over several sets of the words to see if they're learning as time goes on. And we might do the same with visual diagrams as well. See if they can copy simple line diagrams and see if they learn those over time as well.
Memory tests, we might get them to try and remember bits of information and then test them with two options. Did I say that the woman’s name is Mrs. Green or did I say it was Mrs. Brown and then, I know, ohh, it was Mrs. Green. You've recognised it, The information's in there, but I'm not so sure you would have got it with free recall spontaneously, you might have needed a prompt.
Various problem solving tasks that we would do separately to that, so little like construction problems, building a tower out of little disks of wood, move it from one place to another according to certain rules. So these are higher level problem solving tasks which we get people to do.
Ashwini 00:19:20 - 00:19:41
You know, it's interesting. I was talking to a colleague the other day and I was just saying how I would absolutely love to undergo a neuropsychological battery. I'm absolutely fascinated when I read about these things and just think, you know, it'd be really good to have an understanding of where I am now, also because you know thinking a little bit morbidly if anything were ever to happen, it would be really good baseline to understand.
Brooke 00:19:41 - 00:19:45
I absolutely hated it!
Ashwini 00:19:45 - 00:19:58
I think they just take me back to, like, doing a lot of verbal reasoning exercises when I was younger. I don't know, my mum had me doing bond papers for years! Anyway, I digress!
Russell 00:19:58 - 00:21:20
That’s one thing you say to people is it'll feel a bit like being back at school and doing some classroom tests and tasks. So part of your question is how do people prepare for them? Well, I would say a way less preparation is better, because if you get yourself anxious about it or you get worried about what if it shows this, what if it show that, then when it comes to doing the tests we’re not always getting the picture of how your neurological condition has affected your performance. We're possibly getting an effect of how your anxiety or these worries are affecting you because if you're trying to list remember a list of words, but you're simultaneously thinking I'm really bad at this and what will this mean and you’re not listen to the list of words.
We do try our best to relax people try and make them as comfortable, try and reassure them if they've got specific worries, make sure that you know they've got a cup of water or let them know that we can take a break at any point if they want, always feeding back to us how they're experiencing it. We can't really sure and say oh, you're doing great because we simply don't know that - they're being tested. But in terms of their engagement with it, we'll just try and let them know, yeah, that's fine, you're doing exactly what we want.
Ashwini 00:21:20 - 00:21:41
I guess my question in relation to preparation was more things like you know, making sure you get a good night's sleep, perhaps having the testing at a time of day that works better for you, a bit like Brooke’s Tuesday afternoon in a quiet coffee shop thing, you know, just not when you've had a really bad night and you've not slept or not like late on in the evening, that kind of thing, finding the optimum time.
Brooke 00:21:41 - 00:21:57
A good trick is to go for a nap just before - 20-minute nap. I heard this on GMTV or whatever r it's called these days. It's that caffeine takes 20 minutes to kick in, so I usually have a cup of coffee, 20 minute nap and I'm good to go.
Russell 00:21:57 - 00:22:04
There you go, you heard it from Brooke first! Brooke is teaching us ace all of our cognitive test.
Brooke 00:22:04 - 00:22:11
But don't drink caffeine after 12 because then you'll regret at 4:00 o'clock in the morning when you thinking why can’t I sleep!
Ashwini 00:22:11 - 00:23:03
Well, I think that's been really, really interesting. And so much food for thought for our listeners. A lot of it also, you know, touches on but expands upon what we've discussed in in previous episodes. Thank you very, very much for taking time out of your day to join us and I know I'm sure what I won't speak for Brooke, but I'm sure he's been very happy to see you again.
Brooke 00:23:03 Speaker 2
Thank you, Russell, yeah. It’s the first time I've see you in three years.
Russell 00:23:07 - 00:23:14
Let's see if we can meet up properly and see you Brooke. Thank you for inviting us, it’s been a pleasure.