Podcast Ep#2 - Barbara Chalk - SayAphasia
[00:00:00] A lot of people's experience of aphasia is that nobody knows what it is and it's a hidden disability. Not being recognised as having something seriously wrong with you is incredibly frustrating. Hi and welcome everybody and we hope you enjoy this podcast called on the tip of my tongue. Now I'm Rob Edwards and I'm Jonathan Hirons and this podcast is a follow up to a film which Jonathan made about aphasia.
So, what is aphasia? Well, it's a condition caused by some kind of injury to the brain, which is often, could be a stroke, or could be just falling off a bike. And it affects your ability to use language in all its forms. Speaking, writing, reading, sending texts, whatever. 350, 000 people in the UK suffer from a debilitating condition called aphasia.
Fewer than half [00:01:00] this number suffer from Parkinson's and yet most people have heard of Parkinson's whilst almost nobody has heard of aphasia. I'm Barbara Chalk. I'm a retired speech and language therapist. I've worked with adults with neurological difficulties with language and speech all of my working career.
I'm now a trustee of Say Aphasia, which is a charity that supports people with aphasia. So, hi Barbara, and welcome to this On The Tip Of My Tongue podcast. Thank you so much for giving of your time and joining us. Uh, great to be here. Well, I hope you're saying that we'll see, we'll see, we'll see, you know, reserve judgment, reserve judgment.
Anyway, I thought before we get into talking about, you know, all the wonderful work you do with people and continue to do with people with aphasia, I wondered if we might, we might start by [00:02:00] just. A bit of speculation, but why it is that so few people seem to know about aphasia, as opposed to say Parkinson's where everyone knows about Parkinson's, even though twice as many people in the UK seem to have aphasia than have Parkinson's, why is it so kind of under the radar?
Is there something, is this an insightful way to kind of talk about aphasia? Is there something inherent in the condition itself, being something to do with the voice rather than the body, if I may make that kind of crude distinction, that, anyway, I think that's really, really useful. And I think it underpins a lot of people's, experience of aphasia is that nobody knows what it is and it's a hidden disability and not being recognized as having something seriously wrong with you, as it were, is incredibly frustrating.
People label you with kind of, Oh, he must have [00:03:00] dementia or some cognitive, or he's a bit do lally, or he's a bit confused, or he doesn't know what he's doing. It's all. Nonsense, because it isn't that at all. I think there's loads of things that make aphasia difficult. The one thing is the name of it. I mean, it's a Greek word for goodness sake, but it's the most difficult word to say probably if you have, you know, if you don't have aphasia, lots of people say it wrong and it's not a memorable word, though the name of it is.
The two is you can't see it. So that's really difficult. And I think the other thing is it's just about language. Now that's really weird for the public to understand. You know, it's like, can you imagine not being able to find your words, but you know, what's going on? I think that's really difficult to put into words.
Put across to the public because they, they kind of, yeah. And also, so that's one thing, but the other, I mean, there's so many challenges. It's a really, really good question to start on. [00:04:00] The other one is everyone I've ever met with aphasia is different. Now, everyone you meet with Parkinson's is kind of similar.
They, they have the kind of flat face, the, the stooped walk, you know, the slurred speech, easy. They're nearly always the same and they go from, from being without Parkinson's and they progressively get worse and you can see the pattern and it's, it's really kind of understandable. Now people with aphasia are so different because They can all have brain damage to a different degree.
So some people, and also they can have the damage in different areas of their language centre. So some people can understand words really well, but they can't say them very well. Or some people can write and not talk. Or some people can write, talk really well, but their writing and their reading is really bad.
And on top of all that, is they're all different [00:05:00] personalities. you know, that kind of how you cope with it and how you handle it is, is difficult. Do you know that's the beginning of the pot of things that are difficult to, to kind of, you know, for the public to understand it. So how you describe that to the man on the street, God, it's hard.
I was just thinking what you said there about confusing it with Alzheimer's or dementia or something as when you meet someone with aphasia and they can't. get their words out properly. Can we talk a little bit about that? There is a kind of huge, as I'm, I understand as a layperson. There's a huge difference, isn't there?
You know, aphasia is not dementia or Alzheimer's. You're not losing your marbles. If you want to talk in computer terms, your, your main drive is, is intact. You've got your memories, you've got your thought, everything's going on. It's [00:06:00] just a bit of software. In the brain that isn't getting it out. Exactly. In various ways.
No, that's a, that's a good analogy. So that you literally can't find the words. It's not that you can't find the sense of what you're doing. So you know where you are, you know where you want to go. You just can't find the name of the street or how, you know, the directions. You couldn't describe the directions, but you, you know exactly where you're going.
And. You don't have your memory, it's not affected, your ability to cope with daily life isn't affected. I mean, I'm talking, obviously some people do have additional problems because they may have bits of their brain when the brain damage happened. That might have touched the memory bit or whatever, but generally as a kind of pure aphasia is about words, reading, writing, speaking and understanding.
And of course, if somebody can't understand words, you kind of think, Oh, [00:07:00] they're stupid. But no, they just can't understand words. It's like, I don't know what it's like, it must be like going to Russia if you can't speak Russian. You know what's going on, you know what you want to eat, you know what you want to drink, you know, you know who everyone is around you and what's going on.
It's just you can't understand anything anyone's saying to you and you can't ask for the drink or the food you want or the directions or anything. And, and you've completely not lost your marbles, you've just lost your ability to use words. To, to, to function really, to get on with your life. So, and I think that's incredibly difficult for the lay person to understand and for us to describe it.
That is very illuminating, isn't it? Um, perhaps we should talk a bit about your work. So say someone is just in hospital now, coming round after a stroke and they are discovering that they have some form of aphasia, which could be any number of different [00:08:00] symptoms about. Difficulties with language, as you say, what would you say to them if you could talk to them?
I think you have to recognize that I can't imagine what it's like and john will know what it's like to wake up and you kind of know what's going on around You but you're like what the heck? Has happened here. So there's, there's a massive shock about you can't read words or anything. It's just, so I think the first thing is to treat that gently and recognize that that's a massive shock and not to throw loads of information to people, which is like completely bewildering because they've kind of woken up suddenly in a different world, as it were.
It must feel like that, I don't know, but it must be something. I don't know, John will be able to say that better than me. So, and I think the job of a therapist or anyone that's working with someone with aphasia is help them to understand what's gone on. and what their difficulties are and that that can take time and [00:09:00] then how to kind of manage it and how to heal some of it how to kind of get better at some of those things and it's about understanding what's going on and also for the family as well because I mean so many people come to our dropping group.
And they've had a stroke, let's say, and they've had a phase for, I don't know, a couple of months maybe, and they're still kind of going, I don't really understand it. It can take a long time to work out what affects your functioning. If you're tired, if you're overstimulated, if there's a lot of noise going on, if there's a lot of people talking.
talking, that all makes it much more difficult. So you've got to kind of learn to manage that and kind of get used to that. And the family needs to learn to do that as well. And the family needs to learn how to manage how they communicate, you know, maybe slow down a little bit or write something down, or maybe draw some pictures for complicated stuff.
Things they might want to put across to them or, you know, [00:10:00] all sorts of different ways that the family will have to adapt. Because of course we're talking about communication really, and that involves two people. You, you can't kind of have a phaser on your own in a way, because you're going to talk to your wife or your husband and they're going to have to go, well, I don't get what you're saying.
So it's kind of like there's adaption all around. So I think whoever's working with the person needs to kind of. You know, how, you know, work with that as well and how, how, because the best way to manage is a understand it and then kind of adapt your environment a little bit to, to help you be successful at communicating.
Make sure people slow down, they don't go too fast. They maybe turn the radio off if, if you really need to concentrate. All that sort of stuff. And that's kind of what our dropping groups hopefully offer is this place where that's understood, because if you go to the pub. Nobody really gets it, you know, and you'll sit in there kind of, Oh my God, there's too [00:11:00] much talking going on.
I can't focus on what you're saying. You know, there's, um, and there's chatter and everyone's talking so fast and they're changing the topic of the conversation. Well, I've, I want to say something about that and they've moved on to something else and you're like, Oh God, and in the end you just give up.
It's just too exhausting and frustrating. Yes, I can't imagine it. Maybe I can imagine getting Parkinson's in a way. Yes. Or having something physical, ending up in a wheelchair. I mean, horrible as that would be, but it could sort of come to terms with that. We are our voices much more than we are our bodies.
Either way, we live our lives separate from our body. We're in our body, but we're not. But we are consciousness in some way. It's our personality. It's our, the way, it's who we are, somehow. Exactly, and I think that's another, I think that's a massive, massive feature of it. You know, imagine if you're the life and soul of the party.
You're the comedian, and [00:12:00] that's all about timing, isn't it? And that's like getting your word in quick. Well, you know. You know, oh I am the funny man, suddenly you're not the funny man, and you know, so I think it goes really deep aphasia to kind of your self esteem and who you are. I think that, you know, that would account for, you know, you'd have to get your head around that as well as getting your head around Gosh, I can't quite manage my words in the same way.
It's like who you are. Suddenly you're not the funny man. You can't do that. And you're not the, the one who organizes all the paperwork in the relationship. And that's the, all your roles are redefined. You're not kind of the decision maker about things in the same way. Um, so it's really. That's the deeper part of what it is.
You're absolutely right. You, you know, the self esteem and not many people kind of think about that when you read about it, it's always a language disorder, but actually it's a really deep thing. It's kind of part of who you are, your self [00:13:00] esteem, and that's why it's associated with kind of a lot of low mood, which is understandable.
Absolutely. And I think that's why, that's why people with a face especially need. That longer term support that, that say aphasia offers, because yes, you can have your rehab and you can work on your language, which is really important and to work out what you can and can't do and how to manage it. But then you start going, all right, I've got to live with my rest of my life.
It will get better because it will, but you know, I, I, I can't get back to work. I can't manage emails and telephone conversations that are too complicated for me. I can't rely on my words to do. my job efficiently. So therefore you, you then have to live with it and, and kind of work on your self esteem stuff and all that.
So you've got to be able to, it's a longer term project that needs support and inspiration and help with it. You've got to work quite [00:14:00] hard at it. So tell us about your own experience of working with people with aphasia. So did you work I, I was in the NHS and I worked, um, most, I mean, most therapists work with neurological problems.
So I also work with brain problems. Mark multiple sclerosis, Parkinson's, a lot of my case load were stroke patients or other people who'd had a brain injury affecting their aphasia. And it's always been a massive interest to me because of the things we've talked about, because it's kind of your change of your, who you are bigger than.
You know, your hand not working. So I've always kind of been interested in, in that long term support for people. I'm wondering if John wanted to come in there. I saw him flashing up on the screen. What does that mean? I've forgotten how we do all this zoom business. It's a long time since COVID. I'm, I'm listening.
Oh, you're listening. Uh, no, I, I'm speaking [00:15:00] very, very quietly. Bells of wisdom. So, so. That's unusual, John. Thank you. I've forgotten what I was going to say now. I was gonna, so, so, you work, yes, the NHS, I mean, how Is it a kind of poor relation in the NHS? Do you know about the funding side of things? How did you, I know John has told me from his own experience that he had to wait six weeks before he got somebody like you, I mean, got a professional, um, speech and language.
therapist. It, and that's not a good, that's not a good thing, is it? You need to get cracking from day one. I'm really, I'm sad to hear that John experienced that because the NHS does work really hard. Um, especially if you have a stroke, you're on a pathway. So you're supposed to get, you know, speech, language, physio, OT assessments within a certain time and they're, you know, they work really hard.
But I think the, you know, we all know the NHS is groaning, isn't [00:16:00] it? So I, and some areas have such good. Speech and language studies, others. It's a bit sort of a postcode lottery. But I think, you know, that's disappointing to hear that that was a six week wait, because that must've been horrific. I think that's right.
Wasn't it, John? That's what you said, I think. Yes. Yes, it was six weeks. Well, and, and because there were so many slots, basically, you have to wait for somebody to. Stop there. Yeah, what were they? They're they're three six weeks or whatever it is so you can start your six weeks I did have another six weeks later on I asked for one but I even that took A few months couple of months I think before it came through So, I mean people obviously the people at the end the nhs You know staff are brilliant, you know, once you get there, they're they're [00:17:00] fantastic And you know, I had three Yeah, I've had three different people working with me on this and they're, they're all brilliant, you know, so it's a money thing.
I heard, just talking about getting started early with therapy, that's helpful. I heard that as a condition, and this may be true of all sort of neurological, that you can make, because of the plasticity or whatever it is of the brain, it can adapt. If you get working on it early. You can build new pathways in there.
But then it plateaus out, you reach a sort of thing. And then I read something, that's what I thought was received wisdom for a while. So, You can't expect it to go on improving. But then I did read that that's maybe not true. I wondered if you had any, the latest, the latest research seems to [00:18:00] be, you might have to increase the amount of therapy and kind of go at it harder, but you can improve.
all the time, you know, you can keep on going getting slightly better, slightly better. I don't know whether you have any views on that. I would argue you can get better over time, definitely. Yeah. And I think, as I said, the first few weeks, to be honest, you're kind of in such a haze. I often ask people with aphasia because we sometimes look at, you know, that first bit of their experience, what they remember, and they don't remember anything.
It's such a blur. They just remember, you know, I used to say, Coffee for every drink that I had, and I didn't really like coffee, you know, that sort of experience, but, but in terms of, you know, uh, so, but, but, um, yes, you have the therapy, which is the formal, what the therapy gives you, it, hopefully, if it's, if it's, is it your assessment of what you are doing.
what your abilities [00:19:00] are, and I think that's really helpful. So you, you will get an idea of, you know, what you can and you can't do, because finding that out on your own is quite tricky. So it's really helpful for someone to guide you through that, um, and then you will have, depending on what you're doing, what was found.
Maybe some practice work and all that sort of stuff. But I would also, I would argue that then once that's finished, the real work starts, which is learning to live with aphasia. And that's when you can implement all that stuff in a natural environment. Because there's so that you have to be able to ask for a coffee when you want a coffee and how to go around doing that and just by exposure to communication in the right sort of way that you'll, you'll constantly improve because your confidence will improve your self esteem will improve and that will improve how much you can do.
You communicate with people. So how successful you are at living with aphasia [00:20:00] probably depends on how you can adapt to it and get on with your life and, and find things that are, that you can do, not things you can't do. Cause that's, I think the other thing, you kind of, you can keep bashing your head against the brick wall and say, I can't say 10 countries.
Well, I can't say 10 countries beginning with A or something, but you know, you could kind of go on with that sort of, let's do some naming things, but actually in real life, is that actually useful? It's much more useful if you go out and kind of can all do your breakfast or whatever. So, and that's, that's kind of the real life work really.
Yeah. Barbara, tell us about. What is it? It's an organization. It's an organization. The joy of it is it's run by people with aphasia. Now, you know, a lot of people with aphasia are quite young, working age, and if they can't go back to work, they're kind of, all their peers, all their friends will be working [00:21:00] and they'll sit at home going, Oh God, you know, I feel so hopeless, I can't do anything.
So it's really good that it's run by people with aphasia. So at last you can, you could do something useful. You can. Be purposeful. Um, and it is basically a group. It's a place where people with aphasia can meet other people who are experiencing the same thing. And that is a massive relief for a lot. The number of times people walk through the door, even when they've lived with it for quite a while ago, I thought I was the only one, or I feel like the only one.
Really? Yeah. And that, and, and this suddenly they go, Oh, they get it. Everyone's different in, in the group because some can talk, well, some can't, but they get it. They get the frustrations and the, the kind of lack, all those things we've been talking about. And I think that's incredibly important for, for some people to have that sort of support.
Where, where is it? Well, we meet, we meet in Exeter, in a, in a hall, but there, all the other groups [00:22:00] meet in different places and they meet kind of every. Each group is different because it's run by somebody with aphasia and depending on what they can offer. So it could be Every week, every month, every two weeks.
Oh, so it's not you. It's not you. I'm just a trustee. Don't, don't big me up too much. I'm just a trustee, but I did start a charity in Exeter and we just had one dropping group, one group. But I've merged with say aphasia. So my group is now a say aphasia group. Right. And there are 15 other groups that are running on the site.
Is it, is it all charity funded? Is it all you raise money for? Yeah, it's all charity funded. Yeah. So it's not my group anymore. It's say aphasia. I'm not in charge. It's run by, it's run by an excellent lady who has aphasia and she runs it brilliantly. And I'm, I just kind of can't keep away. So I just go in and make a tea and chat to people.
They're not going to fire you any time soon. They're not going to fire me, maybe. No, [00:23:00] we hope not. Yeah. So I kind of help to, you know, I, as a trustee, just help to guide the, the charity so that it, it, it keeps offering this for people. But it is, it's, it's all run by donations, which are difficult because people don't get it as a, as a, you know, problem.
So that's, so you, you kind of have to get, work quite hard to explain what you do. To any funder. Whereas if you say, Oh yeah, you know, we've got broken legs. Can you help us? Everyone goes, Oh yeah, I get that. It would be difficult. Oh, easy money. Yeah. Yeah. But when you try and explain, Oh, I can't, we can't read it right.
And everyone's different. And we can't, some can talk, you know, it just becomes a long speech to try and understand it. And then they go, Oh no, I'll just. support the broken leg syndrome, you know It's easier which brings us back I think to the funding of something like parkinson's It's that's that very thing, isn't it?
Because people can get parkinson's understand [00:24:00] parkinson's Yeah in therefore money can throw flow through them. Does the nhs fund parkinson's much more than phasia treatment? Do we know that? I'd probably argue not and there is a Parkinson's Society that offers the long term support that we do. So I guess, you know, I think every, every illness or condition probably, you know, has some charity that's at the end of that journey for that patient, where they get them, help them to live the rest of their lives with that condition and support them.
Is there anything you'd like to say that you haven't said so far, if you can just think of anything? I would just like to say that everyone I've ever met with aphasia has, even though they might feel a bit They, they've got an amazing sense of humor and I do think that's because they're so frigging frustrated that you have to laugh.
You have to laugh because who could make it up, you know? So there [00:25:00] is a great sense of, and I think when you bring people with faces together, they really appreciate that frustration, which is underlying for everyone. That frustration, It probably never goes away, but on the flip side, I will also say, I mean, I don't want to make it sound trivial because on the flip side, we've got a lady who said the other day, she, she got on the bus and she, she kind of couldn't say where she wanted to go.
And that was so devastating for her, the reaction of the bus driver, that she didn't actually go on the bus again. And so, you know, yeah, yeah, this can be, and in fact, she said that she'd had her stroke 12 months ago. And coming to the group was the first time she got out. Then that's how powerful meeting other people with aphasia is.
And that's how powerful somebody who's a member of the public who responds badly to your fumbling around with words can really knock you for six. Is there any way? Yeah, sorry, go on. Yeah, so, [00:26:00] um, we've, so we, so, I mean, for that lady, we have got a little card and that can help sometimes. So you, you kind of, and now when she goes on the bus, if, if she meets somebody who looks like they're going to be, you know, not really understanding, she'll just show it.
It says, I have aphasia, please take more time. So therefore you are putting the responsibility on the member of public You know to support you, and to give you a break And give you more time Um, but it's very hard to do that Because you have to admit that you've got something wrong And then they're going to go, oh But that, you know, it's And that's what we were saying at the beginning, it really impacts a big part of your life and who you are and your confidence and things.
So aphasia's got about 15 groups across the country and we also have an online group as well for those that can't get out. Really, really invaluable for people who want to meet others and to get some support and get some inspiration on how to live with aphasia. Quickly coming back to your lady on the bus with [00:27:00] a card, is there any kind of or something you can put on your phone to help, you know, like Stephen Hawking's computer voice or some, I, I realized you can't necessarily punch in what you want to say into it because you can't necessarily read or, but if it was pictures or if it was certain everyday situations where you could kind of, Well, there is that I've kind of tried to introduce that to people a lot of time in my work.
I think the crux is that people with aphasia just, you just want to have a conversation. Now conversations usually go off a tangent, don't they? And you don't have a picture to describe what you might be talking about. And it breaks up the conversation. So I think it's better to have a pen and paper to hand.
We had one guy who came and he used to have a little black note and [00:28:00] he, if, because he needed things written down to make fully sense of them, or he could write things down rather than say them. And he always said, he said, people think I'm a policeman. Because of course it's like a little notebook, isn't it?
So he he had a great sense of humor and he was okay with it because he'd had aphasia for a long time But but that was what he did He just kept his notebook in and that was really helpful for him. But of course some people can't spell very well So but I I think having a pen and paper is useful not necessarily for the person with aphasia But for the person who's talking to them.
Well, I I used to I used to rehearse going into into shops You So I want to go to the shop round the corner where I buy bits and pieces. And I had to rehearse what I was going to say to them. Because if I tried to do it off the cuff as it were, I get into a right mess. I had to remember, I had to, walking up the street, you know, [00:29:00] remember, I'm going to say this to them, and they're going to say that.
Hopefully they did. Sometimes they didn't, of course. What happens if they didn't? It's a bit like, isn't it? Your French is, your, your French is pretty good until they, so they, they talk back to you and you think, I don't know, I don't know anything you're talking about. Even that strategy was a really good one for you, Jonathan, but for some people, they wouldn't be able to remember the word, they might be able to practice it at home and then they get out and about and you can't kind of, and if you're under pressure, you know, we're We all can't forget things when we're under pressure.
Pressure is the thing, and in fact, just finishing that story, is that I walk into the, and work into the shop, and I just, I go to pieces, you know, because the pressure's on to get it right. Um, so that's why a little card flashed to someone [00:30:00] means that they have to take the responsibility for the conversation and that's quite important.
Yeah, because, you know, for you with a phase, it's quite difficult to take responsibility because, you know, you're always on the back foot. You can't run, you know, you're not quick with words. So it gives them the control a little bit and they, they can ask the questions and be also, you never know which is the word is going to trip you up.
So you, you say, you know, today I'm fine talking about one thing, but the next day I won't be, because that word disappears. So it is a moving target, as it were. It's, it is, and it's not, I think people, some people might think, Oh, well, you could learn it like you, like a child learns language. You know, once you've learned that word, you'll remember it, but that doesn't work for a phrase.
It kind of pops in and out of your head. So, um, that sort of, Oh yes, just teach him these words and he'll, he'll, that's, [00:31:00] that's not how it works. And that's another reason why it's difficult for the public to understand because we would understand it if you could just learn it. But it doesn't work like that, it's fluid and that's another thing that people go what?
Is there a lot of research being done? There's been a lot of research in the last, you know, recently on supporting someone with aphasia and how, how the best way to use supportive conversation, I, you know, all the top tips that help people with aphasia and do we teach them that, or do we teach them this or that, you know, it, it, don't worry, it's fully researched.
It's just, the brain is very complicated. Um, and the research is getting broader, as I say, not just focusing on language because that, that doesn't really, Um, answer all those things we've talked about. Your self-esteem, your, the, the fact that you have to communicate with someone else, so your environment's really important.
So, you know, there's, it, it's quite [00:32:00] a big, um, area really to research, but there's, there's lots going on. Barbara, thank you so much for being with us and talking to us. You talk so eloquently and well about this whole subject. You obviously understand it. so incredibly well, that it's very, very illuminating.
Particularly for me, I've known John, you know, practically, well, since we were 11. I've talked to him a lot about aphasia, but I didn't know the half of it, shall we say. I feel very much enlightened by what you've said. And you're very inspiring to talk to, it's great. Thank you so much. And maybe, if we could have you back.
That would be lovely. Thank you very much. I've really enjoyed it. Thank you for listening to this On the Tip of My Tongue podcast. We hope you found it helpful and informative. Now, if you want more help and information about strokes and aphasia, please go to stroke. org. uk Say aphasia, [00:33:00] that's S A Y aphasia, or one word, dot org, or the aphasia page of nhs.
uk. Okay, Jonathan, well that was a lot of fun. So, um, we're going to do it all again. What are we going to talk about next time? Next week, I, I, I, I think we should talk about carers or caring. And, um, one of the people we're going to talk to is Michael Shan. Ah, now I think I know who he is. He's the head of Carer Support, Carers UK.
Very important gentleman. And, um, his organization has been making life better for carers. All carers, not just people looking after people with aphasia, but everything else, I guess. So that should be, that should be very illuminating. Anybody else? Have you got someone else up your sleeve? I do. Um, I have, um, Anne Hirons.[00:34:00]
Ah, that name rings a bell. Hyrens, did you say? What's your name again, Jonathan? Hyrens. Yes, so who is Anne Hyrens? Anne Hyrens is my wife. And she looked, she looked after me when I had my stroke. So, we'll talk to Anne who, who helped me out through, um My, um, stroke and, you know, the problem with aphasia. Talk to her about the, from the caring point of view.
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