On the tip of my tongue - talking about Aphasia
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.
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
Support the show: https://www.paypal.com/paypalme/JonathanHirons
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.
