Jonathan Hirons's journey following his stroke and diagnosis of aphasia is both inspiring and informative. Here’s a summary of his experience and insights about aphasia:
Jonathan's Experience with Aphasia
1. Initial Incident:
In January 2019, while in a business meeting, Jonathan began to feel strange and soon realized he could not communicate effectively. His colleagues quickly called for medical help.
2. Medical Emergency:
He was rushed to University College Hospital, where scans revealed he had suffered a stroke due to a bleed on the brain. He spent five nights in the hospital and was diagnosed with aphasia.
3. Impact on Daily Life:
- Jonathan struggled with basic tasks such as speaking, reading, and writing. - He had memory issues, recalling only his postcode but not his full address or other personal information. - He faced challenges in understanding spoken language but could still sign his name.
4. Support from Family:
His wife, Ann, played a crucial role in his recovery: - She encouraged him to read aloud daily and used flashcards to aid in word recognition and writing. - This early intervention was vital for his rehabilitation.
5. Progress Through Therapy:
With the help of speech therapy, Jonathan made significant improvements: - He regained much of his ability to read and write, although he still experiences difficulties, especially when tired.
6. Advocacy and Awareness:
- Jonathan has turned his experiences into a creative outlet by producing films, including "On the Tip of My Tongue" and "What is Aphasia?" These films aim to educate others about aphasia and its challenges. - He actively shares his story to raise awareness about aphasia as a hidden disability and the ongoing need for support beyond initial rehabilitation.
Understanding Aphasia
Aphasia is a language disorder that affects communication abilities, including: - Speaking: Difficulty in forming words or sentences. - Understanding: Challenges in comprehending spoken or written language. - Reading and Writing: Problems with reading text or writing coherently.
Key Takeaways
- Aphasia is often a result of brain damage, commonly from strokes, and can significantly impact daily life. - Early intervention and support are crucial for recovery. - Awareness and education about aphasia can help reduce stigma and improve support for those affected.
Jonathan's story highlights the resilience of individuals facing such challenges and the importance of community support in their recovery journey.
Aphasia in Popular Culture and Awareness: Exploring the Silent Struggle
In this episode of 'On the Tip of My Tongue,' hosts Rob Edwards and Jonathan Hirons delve into the world of Aphasia—a condition caused by brain injury that significantly impacts communication abilities. They discuss its portrayal in popular culture, specifically referencing a character with Aphasia in the detective series 'Department Q.' The hosts highlight the importance of Aphasia awareness, especially during June, the designated Aphasia Awareness Month. They share insights about various types of Aphasia, mention notable individuals like Maurice Ravel and Bruce Willis who have faced the condition, and the impact and advances in therapy. The conversation also touches on diverse topics including a musician friend, Graham Hall, and a nostalgic reflection on Rob's appearance in 'Doctor Who.' The episode underscores the significance of awareness and community support in understanding and managing Aphasia.
00:00 Introduction to the Podcast and Hosts 00:45 Understanding Aphasia 02:05 Aphasia in Popular Culture 04:51 Interview with Graham Hall 07:27 Famous People with Aphasia 14:37 Rob's Doctor Who Experience 19:58 Podcast Growth and Listener Demographics 21:23 Conclusion and Resources
Life in the key of Aphasia - https://grahamhall.bandcamp.com
There's a character in a very popular detective series, Department Q, recommended to everybody. If you've not seen it. Anyway, there's a character in it who has aphasia. And due to the fact that he had a traumatic head injury, got beaten up when he was a kid by the villain of the piece. But anyway, it's sort of interesting, isn't it? That's the first time I've noticed what sort of popular culture, if you like. 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 Hyron. 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 text, whatever. 350,000 people in the UK suffer from a debilitating condition called aphasia. Fewer than half this number suffer from Parkinson's, and yet most people have heard of Parkinson's, whilst almost nobody has heard of aphasia.
SPEAKER_01
So welcome to On the Tip of My Tongue. It's June, and June is is aphasia month. Aphasia awareness month, more correctly. So uh we wonder as we talk, Rob and I, whether things have uh have actually changed. Because it's about a year since we started doing this. What do you think, Rob? Is it is it has the dial shifted? Yeah.
SPEAKER_02
I'd I have no idea. Right. Next how would how would one find out? Well, our figures have gone up. That's maybe some kind of our figures have gone up. Yes, they've gone up. Which is good. Another little thing that you pointed out to me was that there's a character in a very popular detective series, Department Q, recommended to everybody. If you've not seen it, brilliant. Matthew Good. Anyway, there's a character in it who has aphasia. And uh, due to the fact that he had a traumatic head injury, he got beaten up when he was a kid by the villain of the piece. Anyway, I won't spoil the ending for you. But anyway, there's a character, and it's sort of interesting, isn't it? That that's the first time I've noticed what sort of popular culture, if you like.
SPEAKER_01
Yeah. As far as I know, that's the first. Yeah. And in fact, he goes they when they talk about the character with aphasia, they actually talk about what aphasia is. Yes. Uh which which not rather than saying, Oh, he's got a phasia, and everybody goes.
SPEAKER_02
They feel they have to explain it.
SPEAKER_01
Yeah.
SPEAKER_02
So it's obviously helpful to the plot that he's got very bad aphasia. You think it's global. I think it's global aphasia. They don't say that bit. It's obviously extreme. He can't speak at all, and he can't write or or read, I assume. But he can draw, interestingly. Very well. So yes, very well. And um that's part of the plot that he kind of draws something which helps them solve the crime. So it's interesting that the character actually appears in it with a phasia, but it's also significant that it it has to be explained. Well, yes. You know, another character says, Oh, what's that? Oh, well, a phasia, it's a language who can't speak.
SPEAKER_01
Yeah, yeah. We say every time we go on the podcast, at the beginning of every podcast, you go through the whole thing about what's a phasia, and people still don't know what it is, or can't get their heads round it.
SPEAKER_02
Yeah, so we don't know really whether the dial has shifted, but that is an interesting little thing.
SPEAKER_01
I th I think the fact that there is a an aphasia awareness month is goes to one every year. As far as I understand it.
SPEAKER_02
It's been for several years, I think.
SPEAKER_01
I was gonna say it it's global, but it it's certainly in America and in Australia that people do make an an effort to talk about a phaser as much as they can, obviously not just in June, but but this is everywhere you go, in July, nothing.
SPEAKER_02
Nothing.
SPEAKER_01
We never talk about it.
SPEAKER_02
No. No. It must be the turn of some other condition.
SPEAKER_01
Yeah. Well, it probably is. It's quite often The treaded Parkinson's. Well, they're they're getting everywhere, don't they? Moving swiftly on. So you may remember, Rob. We spoke to a chap called Graham Hall, musician. Yeah. Opera North, where he was the percussionist, Opera North. Yeah.
SPEAKER_02
Which you you've worked with him, yes. Briefly, briefly. I was in a couple of shows and opera. But he remembered them and we talked about. I mean, I never got to meet any of you don't meet the orchestra as a general rule. Except in the stage. Well, yes, except in the pub, but they don't they don't tend to be in the pub. I may be wrong about that. I don't know why.
SPEAKER_01
Perhaps they don't call your the pub that's the singers are all yeah, the singers are somewhere else. Maybe a glass of wine somewhere, yeah, maybe or something. Rather than a pint of beer.
SPEAKER_02
The fiddle section are more white, white, white.
SPEAKER_01
Slight split.
SPEAKER_02
It's a mindfield.
SPEAKER_01
It's another world, isn't it?
SPEAKER_02
It's another world. But anyway, look, Graham, you were talking about Graham.
SPEAKER_01
Yes, sorry. Yeah, so Graham.
SPEAKER_02
Is he?
SPEAKER_01
He's fine. He's doing his uh arranging now. He does orchestrations. I'm gonna do a little film about him actually. I'm doing it sort of about the same time we're doing this. You're going to do include his funny songs. I am. Well, yeah. That's the reason. The last one he's done is The Sound of Silence. Which he's done quite a good job. But I said, I don't think I'm worried about copyright.
SPEAKER_02
Yes.
SPEAKER_01
Some some of his stuff is okay because he's got the copyright, but he hasn't got Paul Simon does not may just or his lawyers may come along and say, Oi, not do this. Yeah.
SPEAKER_02
I'm sure if you are Paul Simon, he'd be perfectly happy to use it.
SPEAKER_01
I'll do this after this. I'll I'll give him a I'll send a text.
SPEAKER_02
To Paul Simon. You got his number, have you?
SPEAKER_01
Yeah, probably.
SPEAKER_02
Yeah, you get him on the podcast.
SPEAKER_01
Sound of silence. You'll have to speak up, mate. So Graham is doing his his thing and he's doing orchestrations. And it one of his other one of his friends was with ENO, and he's no longer with them because ENO are practically disbanded. So he's doing a number of concerts using Graham's orchestrations. He said to me, out of six, four of them are Graham's arrangements. So they're going to do that at the end of the month in Guildford. One of the pieces that Graham has orchestrated is Ravel. And you're going to ask me which one, and I don't know. Did you know this? That Ravel had aphasia. Well, I didn't know that.
SPEAKER_02
But you did tell me. Didn't. And you did tell me before. And I looked it up.
SPEAKER_01
Yeah.
SPEAKER_02
And all to check on you. I mean, you know.
SPEAKER_01
To see whether I'm just Just making this stuff up. Making it all up, yeah. Like most of this. Ravel had you came up with the What's it called?
SPEAKER_02
Progressive aphasia. Because we had this explained on one of the podcasts, didn't we? I can't remember who did the explaining. It might have been Dr. B, Suzanne B. But there's a big difference between the sort of aphasia that you've got. I think I'm right. Do you tell me if I've got this rot misremembered this? The aphasia that you've got is very different to what Bruce Willis has got, which is like Ravel. Bruce Willis and Ravel, the same thing. Ravel had a progressive aphasia. So it gets worse, and it's related to dementia, as opposed to what you've got, which gets better. I mean, you not better entirely.
SPEAKER_01
No.
SPEAKER_02
But you with with therapy and with help, you can improve it.
SPEAKER_01
Yes. Improve your speech and writing.
SPEAKER_02
And people do. And it doesn't get worse anyway.
SPEAKER_01
No.
SPEAKER_02
Of itself. The brain has its neuroplasticity, I suppose, and it finds Well you know, I'm just Sorry. Your eyes have glazed over. And the the neurons find different pathways. There we go.
SPEAKER_01
Well done, Dr. Edwards. And well, it was interesting. I didn't know about it. I read a bit. He had a head injury, something to do with a taxi. He was either in a taxi or his hip up. I don't know about. Anyway, had a head injury. That's what started it all off. And they they guessed it was probably some it was a phasia. However, they thought that he had some other problems with his brain. Which I suspect is how the we're making all this up, I suppose, but the how the progressive thing came along. So eventually he couldn't speak at all.
SPEAKER_02
Right.
SPEAKER_01
And died, effectively died you know, of it. He just got worse and worse and worse. And I think they tried to do some sort of surgery which didn't work.
SPEAKER_02
And then that's the end of it. That was a bit so bit desperate measures.
SPEAKER_01
Yeah, exactly that. And and for quite a long time, about seven years of his life, he was he was in this condition. So he wasn't able to really do many more composing things.
SPEAKER_02
Maybe we should do I don't know how it was famous people with aphasia. Yes? I was thinking more, you know, throughout history. Oh. Who knows? And and when aphasia got recognized, and I don't know when the word even first appears as a condition. We all do that.
SPEAKER_01
Could be a job to you. Between your telewatching.
SPEAKER_02
Yes. Between my department Q Netflix series. Exactly. Yeah, that's a thought.
SPEAKER_01
We'll have a go. We'll have a go.
SPEAKER_00
Oh collect the match. And uh that's coming to go. I'm looking in where loving the podcast.
SPEAKER_02
Subscribe for more episodes and support the journey. Your donations help keep the show thriving. Please go to tipofmytonguefilm.com. Thank you for being part of our community.
SPEAKER_01
So, moving on. You recently had a birthday.
SPEAKER_02
Yeah.
SPEAKER_01
As you may know. And uh you share a birth date with with Bob Dylan.
SPEAKER_02
I do, yeah. Yeah, who I love. Oh well, I don't, you know, I love his music.
SPEAKER_01
You're a big fan, I know. And uh the filmish is the film that seems to have done well, although it didn't win any awards.
SPEAKER_02
We're talking about a complete anime.
SPEAKER_01
Which we've both seen and we think is a uh pretty good film. I think also the the actor Edward Norton, who plays Pete Seeger, is particularly good in this. In my opinion.
SPEAKER_02
My opinion too. I echo that. Yeah, I think he's wonderful in it. I think it's a good film. I d you've uh yeah, I mean, in some ways I suppose it sort of it it concentrates on this sort of bust up, doesn't it, when he when he went with Pete Seeger and a sort of folky crowd.
SPEAKER_01
Yeah. When he went kind of one small fact that came to ha to man to hand when I was talking about all of this to myself, is that he's now thought uh the younger people, um I'm uh talking really young people, have have noticed who he is. And and that the his his Spotify downloads have shot up, which apparently they they normally about five million a a month, which is not bad. I wish we could get that, Rob But and and the Rolling Stones of something like sixty million, but his has gone up not it's not tenfold, but certainly fivefold in the because of the film. Because of young people who obviously have Spotify on their phones are saying, Who's this bloke then?
SPEAKER_02
Well, I think so. I mean, my younger son, Lukey, he went to see went to see it at when he was at uni in Manchester. And I went with him when he was down here, so he's seen it twice. He likes it a lot and is listening to quite a lot of Dylan. Likes him.
SPEAKER_01
Which probably proves that it does, you know, it in endures his music or his his poetry, I think. I was actually I was I was listening to it the other day because I haven't listened to it for years. But you listen to the poetry, and it is poetry. It's pretty good stuff. Yeah, I I think so. I think and I wonder well, that's obviously why he's still around.
SPEAKER_02
Making And he won a Nobel Prize for it.
SPEAKER_01
In indeed.
SPEAKER_02
Was that for poetry or was that for music or something else entirely?
SPEAKER_01
I think it was for totally. He didn't turn up for it anyway, I know that. I think it was for poetry actually. Which brings me neatly or not neatly on. With the other thing that was picked up the other we're we were doing a bit of filming, you and I, and uh the other week, and uh with uh UCL. And uh somebody said, Oh, you were in Doctor Who, weren't you?
SPEAKER_02
What has any of this got to do with aphasia?
SPEAKER_01
Oh nothing.
SPEAKER_02
But you and Doctor Who, which you were, but I was in the first episode of The Robots of Death, which ran over, I don't know, four, five, six episodes, you know, is one of the stories. Oh, yeah, yeah, yeah. Oh yeah. It was a half hour back in the day. This is Tom Baker.
SPEAKER_01
But people still talk about it.
SPEAKER_02
I'm told. I get I still get I wouldn't say deluged with fan mail. It's not fan mail for me, I must point that out. These are fans of Doctor Who, right, and they collect Doctor Who memorabilia and stuff like that. That's it's a big thing. And they write to me saying, you know, oh, you were fabulous as Chubb in Robots of Death. Could you send me a photograph?
SPEAKER_01
Yeah. And sign a lock of your hair.
SPEAKER_02
No, they never want to lock it. The sign photograph. So they're obviously collecting you know, pictures do with Doctor Doctor Who, or sometimes they sent me. I've been sent a still from the show.
SPEAKER_01
Really?
SPEAKER_02
From that episode, yeah. And they asked me to sign it and stuff, which I do, of course. And I even get asked to go to conventions, yeah. Which aren't I don't I haven't actually been.
SPEAKER_01
No, but people do go to them. People do go to them. People do go to them because yes, I think they do.
SPEAKER_02
Yeah. And you know, obviously to appear at them, they've been in the show or something like that. And my very good friend Jacqueline King, Jackie King, she was a big part in Doctor Who much more recently in the modern, in the revamp. Right. Modern Doctor Who. And she got I don't know, loads of money. And an airfare to LA and went to a big conversation. I never get any of that. There's no LA for me. No. But she went and and you know, they put her up in some swanky hotel and paid her a good old fee. Anyway, what what about the robots of death?
SPEAKER_01
I want you to tell them.
SPEAKER_02
Oh, say no more. Go. Go. So I'm booked to do one episode, the first episode of The Robots of Death. Playing a character called Chubb. And at the end of the episode, I am killed. Murdered. Strangled, actually. I'm doing the mime for you. Strangled by a robot. I'm the first victim. The robots turn on people, you know, obviously. That's the sort of storyline. And I'm the first victim. And I get killed at the end of episode one. And they were filmed episodically, so sorry, multi-episodically. So they were filmed, I th I guess they probably did I can't remember that's how long ago. But they probably filmed three or four episodes at the same time. And so I get strangled, and then there's a shot of my body under a sheet with my feet sticking out, being wheeled across on the trolley My Dead Body. And it's me, it's actually me. And my feet. And they put this shot at the beginning of the next episode. I don't think they'd planned to do that, but I guess in the edit they it was either a mistake, because they'd only booked me for one episode. And so they had to pay me for another episode for my feet, which got surprisingly exactly the same fee as the rest of it got. It could have been anybody's feet. Well but they had but they were honest. I didn't complain about I didn't it is the BBC, you know. It is the BBC, and that shows great integrity in my view. Because what was I gonna you know? I wouldn't have known about it except when I saw it. You know, and I might have gone, oh, that's easy in episode two. Then what would I have done? Where's my money? Where's my money? Try and sue them. No, they coughed up. There you go. Good old BBC. That's what I say. Well, yeah. It gets a lot of knockers, a lot of people on BBC. I think it's a rumor institution.
SPEAKER_01
I don't know why people do this because we get so much you know, we get the news, we get entertainment, people like you telling stories. Right. So the other thing is I'll I'll go well reiterate the fact that our our downloads are going up. If that's quite correct. That will include this one. No then they'll go down again. No, they are going up. I mean they're going up quicker than they were. Which is good. Yeah. I I've got a bit of kit that goes along when we do all this. It tells me how many people have downloaded each episode as well, actually. And where in the world they are. Gosh.
SPEAKER_02
It's true. And where in the world are they? Who's Well no, don't you furthest afield at Staten Landis?
SPEAKER_01
Oh Australia.
unknown
Right.
SPEAKER_01
We have quite a few people in Australia. Quite a lot in America. Oh well, jeez to them. Uh the other thing is it's it's mainly Apple. Apple podcasts. More people listen on Apple podcasts than any other device.
SPEAKER_02
Right.
SPEAKER_01
So nothing to say about that. That's just what it is.
SPEAKER_02
Right.
SPEAKER_01
So there you go. So I've run out of idea I've run out of ideas. Run out of ideas a long time ago. I ran out of my list of things.
SPEAKER_02
It's great talking to you, as always. And we'll be doing more podcasts in the future, so Indeed we will. Everybody out there in podcast land, stay tuned. Indeed. Watch this space, and we will hopefully bring some more interesting stuff. Well hope this has been interesting and informative.
SPEAKER_01
We have a list of people to talk to. Also, don't forget it is uh June and it is aphasia awareness month. But it has to be awareness all the time.
SPEAKER_02
Well said. Thank you. Loving the podcast. Subscribe for more episodes and support the journey. Your donations help keep the show thriving. Please go to tipofmy tonguefilm.com. Thank you for being part of our community. 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, that's SAY aphasia or one word.org, or the aphasia page of NHS.uk. Enjoying the podcast. Subscribe for more episodes and support the journey. Please go to tipofmyfilm.com in the description. Thank you. This has been a Buffalo Lounge production. Please follow Buffalo Lounge on all the socials.
