On the tip of my tongue - talking about Aphasia
In January 2019, while working in London, Jonathan Hirons’s life suddenly changed.
He remembers sitting in a business meeting with colleagues discussing a work project when he “began to feel strange”.
Jonathan soon found that he couldn’t make changes to the document he was working on, and he began to struggle to find the words to speak.
Fortunately, realising something was very wrong, his colleagues acted quickly and called an ambulance.
Jonathan was rushed to University College Hospital, where CT and MRI scans showed he had suffered a stroke caused by a bleed on the brain. He spent five nights in hospital and was diagnosed with aphasia.
Following Jonathan’s stroke, many everyday things became a struggle, including work. “My work stopped on that day,” he explained. “Initially, I couldn’t speak properly, and I was unable to read or write”.
Additionally, Jonathan couldn’t remember much of where he lived. He remembered his postcode, but not his address, mobile number and the PIN for his bank account. Jonathan also sometimes had trouble understanding what was being said to him. He could, however, sign his name.
This was a worrying time for Jonathan and his loved ones. He had to stop driving. His wife, Ann, ensured he carried a card with his name and address and contact numbers.
However, recognising the importance of starting the rehabilitation process as soon as possible, Ann also encouraged Jonathan to begin reading out loud.
Every day a small amount of time was set aside to read a few lines of a book. In addition, Ann started using nursery school flashcards to help Jonathan with word recognition and writing.
When speech therapy started, Jonathan vastly improved and is now at the point where he can read and write more fluently.
“Over time and with much help from my wife and speech therapists, I got my speech, my reading and my writing back on track,” said Jonathan. “Even now, I find reading and writing difficult, particularly if I’m tired and I still get words mixed up, but I’m a lot better”.
Jonathan is now using his experiences and creative skills to help others impacted by aphasia with his film ‘On the Tip of my Tongue.’
https://youtu.be/3kHmx1TrWxs
After successful funding campaigns, help from the Tavistock Trust and support with PR, the film was finished in September 2022.
“Currently, I am showing it to people in the health industry as a training resource: it recently has been successfully presented to Carers UK,” said Jonathan. He has also produced a film called ‘What is aphasia?’
“So here I am four years later, and I’m still wanting to put the word out about aphasia, so if you read this, please pass it on to as many people as you can so that we can keep the interest going,” he added.
Jonathan said he wants people to understand that aphasia is a hidden disability and that he feels there is a lack of support once the initial rehabilitation is over.
“The main problem with aphasia is it is very difficult to explain. People say, ‘you seem fine,’ but they don’t know about [difficulties with not] being able to form words quickly or following a conversation in a group. Just because you have lost your words, it does not mean you have lost your intellect.
“Recovery from strokes and head injuries vary considerably. Some people can regain the ability to function independently others need more help. Help and support tends to come from charities and the family.” But despite the immense challenges faced by people living with aphasia, Jonathan’s message to others is one of hope. “Persevere. It may seem to be hopeless, but improvements will come. Engage with fellow sufferers and, if possible, join a group”.
On the tip of my tongue - talking about Aphasia
On the tip of my tongue: Series 1 Episode 6 - What we have learned so far...
Reflecting on the Journey: Uncovering the Themes of Aphasia Awareness
In the final episode of Series 1 of 'On the Tip of My Tongue,' hosts Rob Edwards and Jonathan Hirons review the key themes and insights from their podcast series dedicated to raising awareness about aphasia. They discuss the stigmatization and misunderstandings surrounding the condition, share personal stories from guests such as Dr. Trevor Powell and insights from Michael Shann on the role of carers. The episode underscores the importance of caring, the challenges faced by those with aphasia, and looks ahead to future technological advancements in treatment.
00:00 Introduction to the Podcast
00:16 Reflecting on the Series
00:59 Understanding Aphasia and Stigmatization
05:22 Personal Experiences with Aphasia
07:43 The Role of Carers
10:59 Future of Aphasia Treatment
11:15 Conclusion and Next Steps
To watch Jonathan’s film: https://tipofmytonguefilm.com
http://x.com/buffaloloungeuk
https://www.linkedin.com/in/jonathanhirons/
The Tavistock Trust for Aphasia website
http://aphasiatavistocktrust.org
Episode #6 - What we have learned so far...
Rob: [00:00:00] Hi everyone and welcome to on the tip of my tongue. The podcast that's dedicated to raising awareness about aphasia. I'm Rob Edwards. And I'm Jonathan Hirons.
Jon: So we're in our studio in South London, where all the magic happens.
Rob: And in this Episode six, the final episode of this series, we thought we would step back and have a look at the episodes that have gone and see, try and get an overview, try and see what themes have emerged.
What Have We Learned could be the title of this particular episode.
Jon: And yeah, and I think the, the, the idea Right from the beginning was to for me to try and show Rob what aphasia is about and we've obviously had some We've had some guests who've given their versions of what aphasia can be for them and for other people So we're going and that's what we're going to talk about today
Rob: Well, one of [00:01:00] the things that came singing out to me in the course of these interviews was just how much prejudice and stigmatization surrounds the condition of aphasia.
It seems to be that When anybody has trouble with their words, getting their words out, so to speak, other people immediately jump to the conclusion, Oh, they're doolally, or they've lost their marbles, they've lost all their intelligence, which is so absolutely not the case. And Trevor, Dr. Trevor Powell, in the episode where we interviewed him, the clinical psychologist, he told a little story, which is very telling, I thought, about Karen, a young woman, 24, 25, something like that one of his one of the people who came to his drop in clinic, and she had expressive aphasia, by that means she could, she had great trouble getting her words out, although her understanding and comprehension [00:02:00] were perfect.
Excellent. And she could only say, yes, yes, yes, yes, yes. No, no, no, no, no. And somebody else in the room said to Dr. Powell, Oh, what mental age is Karen then, do you think? And Karen, who understood what he said, immediately stuck up two fingers at him. So we had an analogy which we used in the course of the series, which an analogy, which I must say got the thumbs up.
Both from Barbara Chalk, a speech language therapist, and also from Dr. Powell, the clinical psychologist. An analogy between the human brain and a computer. Whereas if you think of a computer as having a hard drive and software working on the hard drive, then aphasia is a glitch in the software. It's not.
Attacking the hard drive, like a very [00:03:00] serious, you know, cognitive disease like dementia or Alzheimer's would have in older people, that is something attacking the hard drive, erasing memories, real cognitive ability to know who you are, where you are, to be able to think properly. Aphasia is just a glitch in the software.
One phrase that kept coming up during the series was that aphasia is a hidden disability, which I think had particular resonance for you, Jon, didn't it?
Jon: Yeah, that's right. It's something that aphasia is a very strange beast, as it were. And it, it hits people in different ways. And in my case, although I I sound fairly fluent.
It's actually quite hard work for me to do this. And for example, although I can read to myself, A newspaper or whatever. I can't read out loud. I'll get into [00:04:00] a terrible muddle. So, although it looks as though I'm functioning, you know, normally, actually it's not true at all. And it's, as I said, it's quite hard work for me to, to keep this going.
Rob: When you did the Michael Shannon episode, episode three, I, I remember saying to you after, I said, Oh, that was great. You know, you did that so well, Jon, you know, you're very fluent and no one would have known there's anything wrong with you. As indeed, he didn't. He said that, didn't he? He did, yeah. He said, I,
Jon: I wouldn't real, I don't real, I couldn't, I didn't, I don't real, I haven't real, oh, I can't say that.
Yeah, yeah, whatever. Go on, carry on.
Rob: He couldn't realize, he didn't realize you had anything. Got me at it now. He didn't realize you had anything wrong with you. And I thought well, why don't you do more of these interviews? You know, why don't you take the lead? You know, I thought I'll just have a cup of tea [00:05:00] But
Jon: it's not you said
Rob: to me how effortful it was It is even though you appear fluent in your speech and so on how how much effort goes into What used to be?
An effortless you know, process.
Jon: I used to give presentations and I've done voice overs for little films that I've done and so on and so on and I can't do any of that now. It would really be hard work for me to do it and I probably wouldn't do it properly at all.
Rob: So. A huge theme that comes through in all, all the episodes, all the interviews that we did was of course caring.
Caring for people with aphasia and indeed caring in general. Because you know, people get fixed in hospital quite quickly after a stroke or after some head injury and [00:06:00] they want you out because they need the beds. It's then that the real Business begins and that always falls on the relative.
Jon: And that's something that I can relate to because in my situation I had a stroke and I was out of hospital in five days once they'd, they'd sorted me out.
But nothing after that, there was no, really until I got some speech therapy which took a number of weeks to come through and then the actual therapy sessions were were, were only about six, I think it was six weeks and that was it. And there's a problem with people who have a situation where they need help and there's nobody to help them.
They have to fall on either a relative or a [00:07:00] friend to look after them whilst they try and rehabilitate, rehabilitate.
Rob: In episode three, you interviewed Michael Shan, who, who is the head of carers support at Carers UK and he said something really rather wonderful that stuck in my mind. He said that the vision of a society that recognizes values and supports carers should be achievable within our lifetimes.
Now, I don't know whether he was being a bit over optimistic. I hope that's right. But he's certainly saying that our society at the moment does not recognize value and support carers. And yet carers actually perform a huge service for our society. By the time you reach 50, this is another Michael Shann statistic that he gave us, by the time you reach 50, you have a [00:08:00] 50 percent chance of becoming a carer.
Carers UK research has found. Carers contribute 162bn to the UK economy. That's the equivalent of another NHS budget, almost. But we mustn't be too pessimistic because of course there are an awful lot of charities out there. Sayaphasia the charity which Barbara Chalk is a trustee of, and Headway, which Dr.
Powell was involved with. So there is a lot of help there, but it is on a charitable basis. So how is the future looking for the treatment of aphasia? Well, in the next series, we'll be looking at the huge technological advances that are already coming down the line, both for the patient and for the therapist.
See you then. To hear all episodes again, click on [00:09:00] support the show in the description.
You're listening to On the Tip of My Tongue, a podcast about aphasia with Rob Edwards and Jonathan Hirons.
