On the tip of my tongue: Series 1 Episode 1 - Living with Aphasia

Understanding Aphasia: Personal Journeys and Insights

In this episode of 'On the Tip of My Tongue,' hosts Rob Edwards and Jonathan Hirons delve into the challenges and experiences of living with aphasia, a language disorder caused by brain injury. Jonathan shares his personal journey following a stroke, highlighting the struggles and the gradual recovery process. The discussion covers different types of aphasia, the importance of early therapy, and the social perceptions and misconceptions surrounding the condition. The episode aims to raise awareness, inspire hope, and provide valuable information for sufferers and their carers.

00:00 Introduction and Personal Story
00:15 Welcome to the Podcast
00:32 Understanding Aphasia
01:09 The Documentary: On the Tip of My Tongue
01:45 Experiencing a Stroke
02:54 Challenges with Language and Recovery
05:25 Raising Awareness and Offering Hope
06:23 Types of Aphasia
10:16 Road to Recovery
16:16 Social Confidence and Perceptions
21:23 Conclusion and Next Episode Preview

Transcript

Podcast Ep#1 - On the tip of my tongue 
 

Jon: [00:00:00] I didn't know my telephone number. I didn't know my, I didn't know my address and I didn't know my PIN numbers and stuff like that. So I had to relearn all that. That was, that was, I had, I had everything written on a piece of paper.  

Rob: 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. Okay Jonathan, so you were the director of the film On the Tip of My Tongue, so tell us a little bit about it. 

Jon: On the Tip of My Tongue. Is a documentary about the condition of aphasia. It's what happened to me when I had a, a stroke five years ago. And it talks about other people who have aphasia as well. If you want to watch the film, it's on tip of my tongue film.com. And it's on Vimeo and.  

Rob: Why don't we just talk a little bit about you and what happened to you when you had this stroke? 

You know, what that was like and kind of how it, how it developed and what, what happened to your language abilities? I was, I  

Jon: was working [00:02:00] and and, and I, we'd had a break and I came back to the group I was working with. And Somebody said, can you change a word or a sentence on the document we were working on and suddenly I didn't, I couldn't, I couldn't do it. 

It just, everything just disappeared. You know, I couldn't, I could, I knew what, I knew the words, they're in my head. But they, they didn't come out in any way, either on paper or on, to a certain extent, on my in my speech.  

Rob: So, yeah, so when you looked at the, your laptop, am I right in thinking you would be what I imagine a dyslexic person would be? 

You just saw squiggles instead of letters. You saw kind of incomprehensible shapes.  

Jon: It's more that I couldn't Organize the the [00:03:00] letters in the right order to make a a sentence or a word  

Rob: So you knew that you knew what the letters were. Yes, but you had we couldn't spell basically you suddenly lost the ability to spell  

Jon: Yeah, or to make any sense of what was in front of me,  

Rob: right? 

Jon: so that that then I obviously realized that I was something was wrong and I was in the long story short. I was taking the hospital And they did a CT scan and realized that I'd had a bleed on my brain. And and that obviously was, I now know that is what is known as the Brocas area which, which Affects people's language abilities  

Rob: you seem to speak pretty well to me now But you couldn't immediately after the stroke. 

Is that right?  

Jon: That's right. Yeah, I mean you There was a there was a it took probably about a year To get back to the [00:04:00] sort of what we what we can like I can do now But to begin with I couldn't I couldn't read.  

Rob: Yeah,  

Jon: I couldn't write I couldn't I had to relearn writing to a certain extent. So when, when it first happened, if I tried to write something on, on, it just didn't, it was like a child's writing. 

And that came back fairly quickly. But the other thing is that although it's in my head, it's all there. So I, I don't, I've never lost. The words in my head, it's when they come out of my mouth, I suppose, really. So it's the external part of it doesn't work. So it's very difficult to explain. And then sometimes it comes back. 

So it's not something that's, it's constant. And, and, but it's the same with, with, with writing. I can write [00:05:00] a sentence and quite quickly. And sometimes it will take me five minutes.  

Rob: But so you can always. It hasn't affected your comprehension. No. That so you, you always, you can read quietly, you know, silently to yourself. 

I can. And read a novel and you don't have a problem with that. But if I asked you to read out loud. I would struggle. What are you hoping to achieve? Both with the documentary film and now with this podcast?  

Jon: I think the main thing is to raise awareness about the condition. The lack of funding around it. 

Rob: Maybe hope to give some hope as well to sufferers and their carers, people give some kind of guidance and hope for them because you yourself as a sufferer, yours is quite an inspiring story, I think, I think.  

Jon: Well, this is the, yeah. And I think that the. [00:06:00] The film hope, the film does set out to do that to to get people to understand that it's not, it's not there is hope after a stroke and some people, and I have, get better to a certain extent. 

It never goes away, but you can control it.  

Rob: There are different types of aphasia. They do. They kind of overlap with one another. Yes. Should we just do quickly fill in on that side of this? Yes.  

Jon: Because there are, there are, I I, you mentioned brokers. Yes. Just now the  

Rob: brokers area of the brain. So the brokers that you mentioned is also known as a non fluent aphasia and. 

You and people with Brocas, they have a partial loss of language ability. They have difficulty speaking fluently and their speech may be limited [00:07:00] to a few words at a time. So it might be described as halting or effortful. So as well as Brocas, there's also, which is described as a non fluent aphasia. 

There's also another one called Wernicke's aphasia, which is a fluent aphasia. Now this is weird to think about really, because apparently people with Wernicke's aphasia can speak quite fluently. They speak perfect grammar, they make sentences, their speech is not halting or effortful quite often but they talk nonsense. 

So, I dunno, you don't have that? Well, no. Or do you, because these things are mixed up. They're not all completely like separate compartments. Do you have that? That's  

Jon: right. It's not, it's not black and white. It's I do sometimes have a bit of touch of that. Right. And I, and, and I can't, I can't [00:08:00] reproduce it straightly easily, but sometimes something will come out and I'm, I'm thinking about one thing. 

And saying complete others, completely different things come out my mouth.  

Rob: And there's one more called Anomic Aphasia which is something to do with not being able to find the right words for what you want to talk about. You, you, you have your grammar and your speech. Fairly fluently, but the key word that you want just doesn't seem to come. 

Disappears, yeah. Disappears, often the name of something. So you then have to sort of talk around it. Yes. Describe it. That's right, yeah. So you find yourself just  

Jon: But it's all about the brain, isn't it? It's all about how the brain is wired. And this is, this is the thing that I'm trying to get over to people. 

Yeah. Is that It's not simple, it never is with the brain and some people [00:09:00] struggle a lot more than I do, I mean I'm, in a certain way I'm fortunate because I get, I'm at this level of being able to express myself, but some people sometimes don't speak at all. And, and have had the same, the same problem, may have had the same. 

Bleed on the brain or whatever, but it's just hit them in a different way. I mean, in your film, which is great by the way. And I'll say this is you're too modest. It's Won a few accolades, I think, from, well, can you tell us a little bit about that?  

Well, yeah, I think within, within the community, if you wanted to call it that I mean, we've, we've, we've worked quite hard to push the, the film out to the sort of professionals, as it were, so the speech and language therapy community, are very on, on, on board with this. 

[00:10:00] And the  

Rob: Tavistock Trust, I think.  

Jon: Yes, are very supportive on this and in fact they've, we've talked to them about this actual podcast and they're going to, they, obviously they're helping me do this as well.  

Rob: So I think we've got to talk a little bit about your road back to recovery.  

Jon: We'd realised that we had to try and get some speech therapy. 

It was going to be at least six weeks before I could get an appointment. Anne thought, well, because she'd been reading up about it and the. The thing about anything like this is, is the first first two or three months, get the most your most improvement in the first two or three months. This is after a stroke. 

Yeah. Anything like that. Yeah. Anything like that. Get going. Get  

Rob: going as quickly as possible. That's right. Yeah. Yeah.  

Jon: So Anne [00:11:00] decided the best thing to do was to do it, do some stuff at home. She got some flashcards for me to say, this is a cat, this is a, whatever.  

Rob: These will be kids, these will be things kids used in a primary school. 

Jon: That's exactly where she went, she went to the, yeah, and she got some flashcards, and and we started doing that, so what's that cat, you know, dog, and I obviously knew what they were, but I couldn't say the words. You couldn't say  

Rob: the words, so you look at a picture of a cat and you go I know it's a  

Jon: cat, but I mean I mean,  

Rob: you know it is, but you say dog or gibberish or Yeah,  

Jon: or something, or nothing came out right, or at all. 

I wasn't silent, but I, I wouldn't say more difficult, say elephant. That would be hard for me to use the word, to say the word elephant. I'd trip [00:12:00] over that sort of thing. We tried to do some exercises with the reading, reading side of things. And that's where she came up with Cider with Rosie, a wonderful book. 

And she said, just read some of that. And I could do maybe to begin with, I could do two lines and then three lines and then four lines and so on and so forth until I could do a whole page. But, you know, if I had to read, and I did this earlier, I read something off a website, from a website. And I was struggling, not struggling. 

I stumbled over it because I can't get the words out in the right order correctly or not at all. I couldn't, I didn't know my telephone number. I didn't know my, I didn't know my address and I didn't know my pin numbers, obviously, and stuff like that, so I had to relearn all [00:13:00] that. That's scary, isn't it? I  

Rob: mean, how did  

Jon: you? 

That was, that was, I had, I had everything written on a piece of paper. My address. Your name? My name. Yeah. It's a confidence thing as well. Right. You've got to remember that you lose your confidence. Yeah. You know, however you are, you think, Oh God, what will happen if I, you know, so there's this kind of fear of going too far away from home because you might not find your way back. 

And numbers still elude me. And constantly I'm not the right person to ask what a number is because I'll, I'll, I'll see the number, but I'll, I'll say another number. The great example, which always happens to me. If I say, I'll see you in a week's time, I'll say, I'll already have already said a month, a year, or something before I get round to a week. 

Rob: And you say the month, the year out [00:14:00] loud, or are you saying it in your head before you get there? It's in my head, it's a week. It's a week, yeah. As you say, you can make quite rapid progress. In the first few weeks, is that right? Yeah, it's  

Jon: a thing, yeah. But then it sort of  

Rob: plateaus out. You kind of reach a level and then it's much harder to get back to the full. 

Jon: Yeah, and some people do better than others, I think. Some people never even get over the three months or whatever it is.  

Rob: Now, so after six weeks you got your therapy going, the official, this is NHS therapy.  

Jon: How was that? Can we talk about that? Very good. Yeah. Obviously they know what they're dealing with because they get my notes so they knew what I was deficient of. 

So you can get therapy on the NHS? Of course you can, yes. But it's [00:15:00] very short lived. I think I had three, six weeks. Right. I think I might have two sessions, two sessions of three weeks, six weeks or something like that. But it's short. Is that like once a week?  

Rob: Yes, once a week. Once a week.  

Jon: And they'll give you homework. 

So they, they get you to do drills, you know, 20 20 words. And you have to tell them what they are. And I'm, you know, sometimes you wouldn't get them right. You get half of them, right.  

Rob: And your confidence level, that's. That's recovered quite a bit, hasn't it? Yeah,  

Jon: I think so. I still don't, yeah, I'm amazed. 

I mean, you travel  

Rob: around on your own. Yeah, yeah,  

Jon: exactly. I wouldn't have done that.  

Rob: And you drive again, don't  

Jon: you? I drive, yeah. I had to stop driving. Well, that was a combination of my license ran out and they wouldn't give me my license back because I had to have [00:16:00] certain tests, eye tests. But it took six months plus to get my license back. 

And then there's the conference. of actually bang going back to driving you know, so it took longer than How about your  

Rob: your social confidence, you know,  

Jon: it's a slow process to get back to where you were obviously, I mean it probably it took a year to get really more back to my sort of normal self you want to call it in those terms i'm talking about  

Rob: yeah  

Jon: socially  

Rob: I think perhaps we should talk a little bit about When you were making the film and you met obviously, I mean, I don't know whether you met them because you were making it These are people you'd met anyway, who's fellow sufferers as it were. 

Yes. Yeah,  

Jon: I used them as the but you knew them from [00:17:00] from Barbara's group From  

Rob: Barbara's group.  

Jon: Yeah,  

Rob: we have said it before I think but it's very very varied If you know, there are people and people in your film who are really struggling  

Jon: Yeah, I couldn't couldn't do it for you know, physically could not do half of what I've done. 

Rob: Yeah You Yeah, as I say you've done and yeah, Emily who's young.  

Jon: Yeah,  

Rob: I think it's important to say this isn't an old We are oldish people while we're in our There are young people down and then plenty of young who plenty of young people who have strokes and Dan Was in a road accident.  

Jon: Yeah,  

Rob: it's his head It might be a good idea just for a second or two to talk about people's perceptions of victims of stroke and people with aphasia, how other people perceive them. 

And I've heard this, not so much from you, but there can really be, and I suppose it's obvious really, if [00:18:00] someone whose speech is very badly affected, probably more so than yours, that can be interpreted by other people as some kind of Lack of intelligence, or, or impairment, shall we say, of their, you know, full intellectual faculties. 

Yeah,  

Jon: I think that's true.  

Rob: And I don't know whether any of that has ever happened to you, in terms of people perceiving you. Yeah,  

Jon: I  

Rob: think,  

Jon: yeah there is a possibility that that would happen to me an example, one of the things that you can't do, and even at my level, which is the higher level, should we say, is that you can't, Quickly respond to say you know, a bit of banter. 

Rob: Right. Witty  

Jon: remarks, because you're a  

Rob: very witty person. I mean, you know,  

Jon: yeah.  

Rob: You've always been a very witty  

Jon: person. I tried. You tried. [00:19:00] But I find that very difficult to keep that going because I can't, I can't get the words out quick enough. Right. So it may, I may have come up with something. witty, maybe maybe but it's too, it's gone, you know, it's too late because you missed this whizz past, you know, missed the moment, you missed the moment. 

So  

Rob: it's all timing.  

Jon: It's all timing. So in a, in a particularly in a group situation you kind of get lost, lost. Loft left behind because you,  

Rob: I know you are quite, you're a very sociable person and I know you, you play football, don't you? I do. And you've gone back to the, you, you do, you've gone back to that, as it were. 

Yeah. Since, since, since the stroke. Since the  

Jon: spoke stroke, stroke, and even the spoke, but the stroke was worse. The spoke Well, I could, I could live with. Yes, but the stroke now yes.  

Rob: The spoke less. Yeah. So [00:20:00] you, you, you, you play football, some of the team obviously football, banter, banter.  

Jon: All the time.  

Rob: All the time. 

Jon: It's constant.  

Rob: Why else do we do keep the ball round and banter.  

Jon: Exactly. So this is, this is where I sometimes get left behind.  

Rob: Yeah.  

Jon: In, in the, the, in the discussions one-on-one, it's not a problem. But when you're in a, a group. It's it's more difficult. Yeah, and I think and I'm picking up your point about people thinking it's you're not intelligent You've lost some intelligence obviously It's not the case You've not lost anything at all. 

It's not a dementia type situation where your, your faculties have dropped.  

Rob: Yeah. Your memory hasn't gone.  

Jon: No.  

Rob: Your  

Jon: sense of  

Rob: the world, you know,  

Jon: everything's there. Yeah. Everything's there. It's just not coming out in the right way. Quick enough. Or at all, depending on how bad [00:21:00] your aphasia is. So, I think that's, it's worth pointing that out. 

Yes. We're not talking about people who have lost their intelligence. Yes. They've just lost the ability to respond to you know, things. 

Rob: 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. That's S A Y, aphasia, or one word, org, or the aphasia page of NHS. UK. Okay, Jonathan, well that was a lot of fun, so we're going to do it all again. 

What are we going to talk about next time?  

Jon: Well, I thought this next time we'll talk to Barbara Chalk.  

Rob: [00:22:00] Now, she is in your documentary. There's quite a lot of her on the screen there, and she's an absolutely inspiring and wonderful person to listen to.  

Jon: Indeed, and she runs a group of a sort of dropping group for people with aphasia, and she was a speech therapist so she knows, she knows how all this works when people have, start with having aphasia. 

And we're going to talk to her in a bit more detail and give her thoughts on what it's going to be like. 

Rob: This has been a Buffalo Lounge production. Please follow Buffalo Lounge on all the socials.