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.
In this episode of 'On the Tip of My Tongue' podcast, Jez shares his personal journey with Aphasia following a severe stroke in 2016. He discusses the challenges he faced in communicating and how he overcame them by starting a local Aphasia support group during the COVID-19 pandemic. Jez also delves into his long-standing interest in AI, dating back to the 1980s, and explains how AI has significantly advanced in recent years. He introduces an AI-powered app he developed to assist Aphasia sufferers in recalling words more easily. The conversation highlights the potential of AI to support individuals with communication difficulties while noting the broader implications of AI technology in society.
00:00 Introduction and Guest Background 00:15 Overcoming Aphasia: Personal Journey 01:28 Community Involvement and Support Groups 03:17 Introduction to AI and Early Experiences 05:14 Developing an AI App for Aphasia 15:41 Practical Uses of AI in Daily Life 22:27 Challenges and Future of AI 25:17 Conclusion and Final Thoughts
Welcome everybody. I'm going to go to the podcast called the night.
SPEAKER_02
Thank God, Jess, for coming on the tip of my tongue podcast. It's great to have with you with us. Today we're going to talk about AI. But before we start, maybe you tell me a little bit about you and your problem with the phasia.
SPEAKER_01
So yeah, I worked in IT from I guess 30 odd years. And in 2016, I had a bad stroke, a coma for nearly a week, and in hospital for two and a half months. At that point, I could barely understand much what was happening. I couldn't really communicate with people at all. I couldn't read and write. I didn't really understand what was happening even after I left hospital. I really didn't understand what was going on after a lot of work and a lot of very long journey. Most of what I used to be able to do, I can do now, albeit a lot of sl a lot, lot slower. So for example, I can't if there's lots of people, I can't understand what's happening. If there's a group of four or five people talking, I really have no idea what's happening. I can do reading and writing, but very slowly, frustratingly slowly. But I think a lot of us in the community are have similar challenges.
SPEAKER_02
Yeah, so and and also now you're you're uh involved in a group in Rinchester, is that right?
SPEAKER_01
After during COVID, I found about Cerfasia on Zoom. Uh really enjoyed the group, uh the online groups, and thought there was absolutely nothing in the local area. I think the nearest was Chichester, which is what forty f 40 odd miles away. So I spoke to Colin and I guess I said, What do I need to do? And at that point I'd already made the decision. So I started the group about uh just over four years ago. And so yeah, the group has moved on quite a bit, uh, probably 12 to 15 people closer to 20, plus probably on a on the best we've had, we probably had 25-30 people. So it we there's a lot of regulars and people who've been there from for many, many years and really benefit from the great and since then I wanted to do some more help to the charity. So since then I've now joined the as a trustee of the charity, which is say a phaser. That's right, yeah. And uh and I wanted to do it because I thought it was very, very important that the charity should be driven by people with a phasia rather than people who know people.
SPEAKER_03
Exactly, yeah.
SPEAKER_01
And that's it, that's it. People who have to face it every day, every hour is a different experience to a speech therapist, for example, who go home and forget about it.
SPEAKER_02
Yeah, and and and they're one step away from it, aren't they, all the time. Yeah, yeah, yeah. I agree. Well, so you you've you've done quite well, Rick, those nine years. Okay. Right. So, anyway, the reason why we're here is because I'm doing I'm doing some research on AI with with regard to people with a phase of uh uh or any communication problem, shall we say.
SPEAKER_00
Loving the podcast. 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_02
Uh so tell me what you know about AI and what you've been how you've been involved with it.
SPEAKER_01
My first experience of AI, I don't know whether I mentioned this to you before, was actually in the 1980s. And at that point I was getting into IT as a the very early, the early 80s, and one of the first things I did, well, not a few years into it, I I learnt a uh a programming called Lisp that was very much focused on AI, and that kind of started my interest in AI in the 80s. But obviously, the world has moved on what massively so. I never expect I have to say, I never expected it to uh well the technology's moved on, isn't it?
SPEAKER_02
That's the big thing, isn't it?
SPEAKER_01
But even what, four or five years ago, I don't think anybody expected that it was going to do what it can do now, and I think most of us would have said absolutely no chance it could be.
SPEAKER_02
Do you think COVID had something to do with it to move things on faster?
SPEAKER_01
I don't know. It's it I suspect there's a number of factors we're seeing at the moment, and the knock-on from COVID and AI and a few other factors around the world are really changing the the way the world is. And I think everybody doesn't really know where it's going, and certainly with AI, I don't know where it's going. We don't know whether we're at a peak or we're at a much lower on, and there's a lot more to come.
SPEAKER_02
Yes, indeed. I think you're right. You told me when we spoke last that you've had you've you've you have a an app which uh is in progress. Uh perhaps you want to tell us a bit about that.
SPEAKER_01
Yeah, it's uh it's a very it's this is an app. I I came up with the answer, which was I was online chatting to somebody and I was struggling to remember a word. And like most of us in the FASA community, sometimes the word just won't come. Uh, and it's incredibly frustrating. So I was trying to remember the word, and I thought, okay, AI might be able to help me. And AI, so I typed in a bunch of words, very badly typed, trying to do two things at the same time, and it told me the answer straight away. What was it? I think the word the app was something go round fast, go around fast, quickly, a theme park, and it the answer it gave me was what I call it. Yeah, this is this is the challenge, isn't it? Get your app first. Yeah. Well shall I show? Do it so that because of because of that, I thought this will be really useful for me, and for it will be useful for uh uh a proportion of the people who have this challenge. So I wrote an AI app using AI, and I have because of having a lot of time during it after the stroke, I've developed some skills incredibly slowly and incredibly frustratingly, and but with help with people online. So I've developed some skills with Android, and I've been working on doing some things for the number of years. AI has now, I think, moved on a long way. So because of those skills, I understanding the the second the how to use Android and how it how it is set up, right? Because of that, I can now go to Android, go to AI and say, this is what I need, and it will tell you what what code to write. If you don't know what you're doing, you've got no chance. But if you've got some experience, then then it will it it let's look at the app that I've done, I would say if I hadn't had AI, it probably would have taken me months and months and months. With AI, it took me a few days. So shall I show you kind of whether you can see this? Oh, just about. Is that reasonably clear? Yeah, that's fine. Yeah, so the app is incredibly simple, and the whole point of it being simple is people who are struggling to remember the words doesn't don't particularly want complexity. So so the first part of the app is just entering a number of words which you are trying to remember. So anything related, you can type the words in or you can speak them into the into the word. Now I'm conscious that I'm trying to one of the updates I'm trying to fix, which I might have done, which is to allow extra time to be able to talk into it, because certainly when I'm doing it, unless I've remembered what the the words I'm trying to search for, you actually struggle for those lines. Yeah, yeah, yeah. And you just end up swearing at it, which generally doesn't work quite so well. So so what I will do is I will give a quick demo, right? Which is I'll just say the words that I'm trying to remember to give me the the the the word that I can't think I just can't think of. So okay, so it goes round around theme park fast. So it's now given me some the words that I wanted, if you can see. Can you just turn it? That's it. Yeah.
SPEAKER_03
And then if I hit submit carousel, ferris wheel, roller coaster.
SPEAKER_01
Right. So and the word I was hunting for was roller coaster. I guess that. Yeah. Yeah. So the idea being it's incredibly simple, but it's one of those things that we will struggle with at times. And I got it on a I've got it on a tablet, I've got it on my phone, but as you said, it's a theme, it's a progress. I'm not quite finished yet, but I hope if I can get it all working, then people can really at times help themselves when struggling with things. Uh and certainly in my group, there are so many times when somebody is sitting there trying to remember a word. Now, some of that is good for us to to try and remember those stuff and push ourselves to do that, but excuse me, but at other times it's incredibly frustrating. Yeah, you're sitting there and completely like the obvious word. Yeah, yeah. Yeah.
SPEAKER_02
So so I suppose the only question is the uh ease of use, I guess, is so that's on your phone or on somebody's phone, you can just pick that up and it's you get that page straight away. That's the only page, right?
SPEAKER_01
Yeah. Okay. So that's all you have to do. I have got another option which gives a different AI problem. So you can use the chat GPT Gemini or something. Yeah, yeah. Yeah. Okay. Yeah. So, and that is intended because some people prefer the different answers that may come up with. Okay. So it's not going to solve every answer that you question. It jogs your memory, doesn't it? And it may, it may not just give you the right one. Um the answer there is maybe providing more other words or think about some of the more related things. It's not gonna, it's not gonna solve everything, but it will hopefully make it a little bit easier for people who are getting very frustrated.
SPEAKER_02
So, in terms of the number of words that you put in when you're asking the question, it is you can say anything you like. Yeah, right.
SPEAKER_01
Yeah, it you can you can give it one, you can give it a lot. And it will try the more I mean if you think it's it's AI sitting in the background. So that AI will try and listen to what you've come up with and try and yeah, I mean it's exactly like a human would do. It would be trying to put all those things together and come up with something which ties it all together, because it only gives you the suggested words rather than providing you with any more background to the other words, which is what we're not we're not trying to do. It's trying to keep it incredibly simple.
SPEAKER_02
Yeah, hit on a as you said, as you just showed me, about three or four words that it could be, rather than great explain explanations of what they might be.
SPEAKER_01
No, okay, get it. Exactly. And the more the more information, the more accurate those responses will be. Yeah. Yeah. Good. Since I've been using it for my own self, and I've heard I've spoken to other people in the group, and they thought that or they they thought, oh god, that would have really helped me if I had that. So hopefully it will it will be a way of trying to reduce some of the frustration that we all suffer from.
SPEAKER_02
So are you going to have a sort of beta test with your with your group? Is that the idea? Or feedback.
SPEAKER_01
Yeah, and I'm trying to I'm trying to work. There's a few things I need to fix. But if I can fix this one remaining problem, then I think it's probably not a million miles off going or publicly, or but it is on Android, just so people are.
SPEAKER_02
So I was that's going to be my next question. It's gonna is it going on the play app on on yeah, yeah, Google Play. Yeah, is that the plan? So yeah.
SPEAKER_01
That's that's the plan. That's a coming plan. As Baldrick would say.
SPEAKER_02
Indeed, he would. Yeah. I think anything like this, uh, whatever it is, helps, you know, the things we know, the things we talk about, the you your groups that you do, it helps to spread the word, doesn't it?
SPEAKER_01
It is. I mean, there's a lot there's a number of factors that I've got from what I I what I'm aiming to do from this, one of which is just helping people and trying to reduce some of the frustration, but the other one is to raise more awareness of say a basia and hopefully raise some funding from it as well, from donations. It it can't my view is it can't it cannot only be a positive.
SPEAKER_02
Yes, indeed.
SPEAKER_01
And personally as well, it challenged me. And with AI doing a lot of the clever stuff, with AI, certainly with putting that together, it was just the the questions and trying the responses, and if it didn't give the right thing I wanted, then I would try a different angle and do so it helped uh you you getting back to where you were, not obviously not completely, but helped you, did it personally, yeah. Yeah, sitting around and doing nothing doesn't help, does it? But doing things and challenging yourself can make you a bit better. Well, this is why I'm doing this. Exactly. The same thing, really. It's the same thing that I do on the group as well, isn't it? That just sitting there watching TV all the time is uh isn't going to make you better. No, you have to try and do something.
SPEAKER_02
So, right, so there's a few things to be going on with as far as AI is concerned. So, any other thoughts about AI, you know, generally? Uh as I say I'm trying to put together a uh I suppose a view from from from people like ourselves who have these problems, how AAI can help us. Uh is there any other thoughts that have come to you, you know, while you've been doing all this?
SPEAKER_01
I think there's so many things that can be used to help us. For my group, I use and the the more I use, the more I think about it, the more things I can help myself with. So, for example, I if I want to do a quiz, before I used to Google and search for a quiz and print the quiz off and take them to the group. Now I go to AI and say, I want to do a quiz for people with aphasia, varying levels of difficulty, these kind of themes, right? And you go and look at the responses and you say, actually, could you make it more complicated or easier? Right. And before I'd have to spend a few hours to try and find a quiz, right? Sub send the quiz and then find out that I haven't gone too far into it and it was too, it was just not very good. Whereas now with AI, I can tailor it far easier than just googling it. So that's one thing. When I need to write letters or emails, I'll write that. Or for example, I needed to respond to somebody had to sent uh an email to the group. So what I did is I sent put the email in AI and said, could you write something to respond to that? And it comes back and said, This is a suggestion. Do you want to make it more formal or less formal or more chatty? And immediately I could get a response, which I would have done and I could have done, but it wouldn't have been as nice, and it would have taken a lot longer. So there are lots and lots of things I use in the group to try and make things better. One that I did from the group a few months ago, which went down really well. I wanted to get the group to try practicing reading stories. Not stories. So okay, I'm trying to think of the word. So, for example, I got AI to print off faulty towers. So, what we did in the group, so AI printed out, formatted it, script, put it in different colours. Yeah, the script, that's what I was talking about. So print print printed that, and I and the different uh members of the group took those different roles, right?
SPEAKER_02
And had a real sound like fun.
SPEAKER_01
It was it was, and we did Monty Python again. People were having a laugh, they were practicing, and for example, what it was wonderful that one of the guys before the the meeting he knew what we were doing, and he said, No, I don't want to do that, too difficult, don't want to do it. And after we'd done the first one, and I said, Who wants to to do this one or faulty towers? He said, Me, me, me, I want to do it. And it it gave him confidence to practice that. And AI helped me doing it rather than it if you just trying to go through it and formatting it and getting the right parts, it was so much easier. But it it to me it's it's like a personal assistant to the group who can then help me and making sure and I can come up with other and say, okay, what should we talk about today? Okay, get it, and it will come up with a bunch of ideas. Well, that's good. Yeah, it's good for you, isn't it?
SPEAKER_02
Because you can keep it keep it going in the group, it doesn't get stale, is the word I'm looking for.
SPEAKER_01
Absolutely, stale is what I don't want, in that I want to do different things with different challenges. Rather than just sitting around having coffee, yeah. Yeah. And to add to that, if you think about it, if you do things even the same things a few times, some people will go, I find that really boring, right? You do that too often, don't they won't want to come back. Whereas if you vary it regularly, the people will they will come back and say, actually, I didn't expect that, but I really enjoyed it, which a lot of times think people say which you did with your script.
SPEAKER_02
Sometimes they say no.
SPEAKER_01
Your scripts isn't exactly things like that, yeah.
SPEAKER_02
Yeah, yeah. So what what about day-to-day apart from the group?
SPEAKER_01
Can I just add to that? Which is you may want to cut that back. Uh right. What I did, I also went to AI and said AR said to AI, I said, could you write me a script about people with a phasia, only fools and horses? And it wrote a script which was pretty good, only falls and horses, the characters, and aphasia, and uh and say a phasia group, which that people then could practice talking and taking, you know, you're Delboy, you're gonna do that, right? And people had a real laugh about now. If you'd said, could I write a script for only fools and horses for people aphasia? No. But AI did it.
SPEAKER_02
Yeah, and and uh how accurate was it, you know, in terms of the original It came it came up with a complaint about it, and it came up with new jokes. But it got the characters, it remembered got the characters right. Absolutely. That's amazing, isn't it?
SPEAKER_01
So yeah, it's you know, you could think that somebody did AI did that within a couple of seconds. Um printed it off, went through the group and said, Okay, I uh try this one. Yeah. Amazing. And of course, I can go through it and say, Can you do another one slightly differently? And it will come up with a different one.
SPEAKER_02
I suppose you could send us get a storyline and say, Oh, it and the story has to be something like this, or and it would change the storyline. Yeah, yeah.
SPEAKER_01
And I I shared it with the peer groups across the country. Things like yeah, so things like that. It the wonderful thing with AI, and this is the opposite to my app. The wonderful thing with AI, it's the world's open. You've got an idea, you you put in a few parts to that, and it will help you. The difference with my app is I focused it very much on what the problem is and what people are needing. And if you put the two, for example, on the app originally, somebody said, Well, chat GPT can do exactly all of that. And I said, Well, yeah, it can do it, but people with aphasia generally can't pick up Chat GPT and say, do this and this and this and this. My apps focus that very much just on the problem. Doesn't it? And people have to learn. Yeah, that's kind of the takeaway, isn't it?
SPEAKER_02
It gets rid of all the the stuff around it, doesn't it?
SPEAKER_01
Really, make it easy for them to and to help people who don't even I mean, too many people I a lot of people I find is they don't want to be part of AI and they just say, Oh no, that's too scary, or it's but no, it's a tool. And the tool you is incredibly powerful, but you have to accept that and learn from it.
SPEAKER_02
So talking about just AI generally and what I'm trying to get at with different talking to different people, so that was a very positive view of AI. What's your negative view of AI?
SPEAKER_01
I think the negative part can be ultimately AI is doing a lot of the things that we as human brains can do can do, and quite often, as I've just been saying, some of things like writing a script, it can do it quicker, better than pretty much everybody. And that's the dark side, I think, of AI ultimately can be that it starts taking if you think the the jobs that gradually took change the planet over the last couple of hundred years, gradually they take the physical jobs away, and AI could potentially take some of the a lot of the jobs that humans can do. Uh which in it it could be a positive or it could be a negative, it depends which way it goes.
SPEAKER_02
Obviously, the thought is if you're as a business, you'd be thinking, well, I can save some some people here and get get AI to do well do my banking for me, which is the where it started to go, it seems to be going with things like banking first, doesn't it? Because obviously the banks are thinking, well, we can save money or we can cut corners or whatever it might be.
SPEAKER_01
And that I and I would also say that knocks on to some other points, which is things like when, for example, you're calling a company or organization, and when you find out you're talking to AI, and you say, No, no, I want to talk to somebody, I want to have a human interaction to who can understand some of the what I'm talking about. And AI may be able to do it, but it can be very folk much focused on what it's trying to achieve rather than the human sort of.
SPEAKER_02
Well, it would have been given a script by the the company anyway, wouldn't they? And the scripts the the sort of the company were saying only talk about this, and when you when you can't talk about this, send somebody, send a real person, which is how it seems to work, doesn't it?
SPEAKER_01
Yeah, yeah. But the the problem there is trying to actually get through to the human person at the end. Indeed. Which the the less the the more they want companies want less people there to save money, the more of a challenge it is to try and get to that point. And I and I think I think in a way that is a factor for aphasia people in that we have a different challenge, and that different challenge means that you're not gonna be the system isn't gonna be designed to deal with that challenge.
SPEAKER_02
No, right. Well, Jess, thanks very much for doing this. It's it's very, very interesting. So we'll be back, no doubt, uh, and talk later, but for the time being, thanks very much.
SPEAKER_00
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. Stay aphasia, that's s-a y aphasia or one word.org, or the aphasia page of nhs.uk. That was on the tip of my tongue, the podcast dedicated to raising awareness about aphasia. To listen to more episodes, click on support the show in the description. This has been a Buffalo Lounge production. Please follow Buffalo Lounge on all the totals.
