Aphasia - Sarah's story

Hi everyone, I'm John Offord, I'm a broadcaster based in the UK and welcome to Different Minds, a podcast series that looks at neurodiversity, the different ways our brains can work and interpret information. Today we're going to talk about aphasia. I'm delighted to be joined by Sarah Bethany Scott from the UK, along with her mum, Joanie Scott. Sarah featured in the second series of the Undatables, which is a TV programme in the UK on Channel 4, and Sarah has aphasia. Sarah, how are you? I'm good, thank you. How are you? Yeah, good, thank you. So tell us about, obviously we're living in extraordinary times. Tell us about how your year has been so far. It's been a strange year this year. I'm all right. It's been difficult because obviously I've been at home a lot of the time, but I've got my partner, so it's been strange not seeing my friends and family so much, but I'm coping well. Brilliant. Have you learned anything about yourself in particular, Joanie, in lockdown, Sarah? I feel like because of my aphasia, I'm not very good at throwing people up or contacting my friends and family, but because of this Covid at the moment, and I don't see them face to face, I'm actually talking them on Facebook or Twitter or messaging them more. So it's kind of good for me, actually, and I'm actually maybe talking to them more at the moment, so yeah, it's good. Brilliant. At this point, I just want to say hello to your mum. Joanie, how are you doing today? Hi, I'm good, thanks. Good, good. Just thought I'd bring you into the conversation as well. So Sarah, just tell us a bit more about yourself. So what do you do for a living? So I've been really lucky that I'm actually working full time after my stroke, because straight after my stroke, I wanted to go to uni, but because of my difficulty with reading and writing, I couldn't. So my path was different and I did some, not jobs, but volunteering at the time and build up some work, and then I'm actually actually working with, I can't say. This is very official. So I'm actually working with people that have cancer and actually producing a product to help people that have cancer and to hopefully treat them. So that's my job. Fantastic. So perhaps the first question then is, if you can tell us so, what is it, aphasia? So aphasia is a part, if you have aphasia, you've got a part in your brain that is affected, near to the left side of the brain, near to your ear. So it affects your communication ability to communicate. What causes aphasia then? So it's more likely if you have a stroke, that's what I had, but it could be a brain injury, or if a person is an operation and it has to do with the brain, that sometimes people have aphasia after that. So you've already touched on this, but what are the main symptoms then of aphasia? So you could have difficulty with reading writing, or your speech, or numbers. I have aphasia, but some people have just one, so they can't talk, or they can't read or write. It just depends about the part that is affected in your brain. What is it like for you, day to day, living with the condition, and what some of the challenges are? It's been really difficult, day to day, things like reading a menu, fanning people, just everything. It's really hard to go out and live your life and talk to people, like strangers as well. People are very anxious. It's been really, really difficult, and obviously some people that have aphasia alone, and it's very isolated. Sarah couldn't speak at all after her stroke. She could only say yes and no, so she's come a long way really. Wow, that's amazing. And so is aphasia something that you can treat then? So I have done speech therapy for a long time, years, which I was very lucky. Normally in the UK, it's six weeks. So it's not a long time. And obviously the best thing is to do, practising as much as you can, and obviously speech therapy is better than doing it yourself. So which is a shame, people want to do speech therapy more, but there's not enough people to help them. So it's very important to do as much as you can, but you can still, if you do still do practice alone, you can still, you know, but also, so at the moment I'm not doing speech therapy anymore, but I have apps that really help. So when I'm actually working or just messaging my friends, I've got apps that, because obviously my speech is better than reading and writing. So I just talk to myself with my phone and it converts. Yeah, so that's really helpful for me. That's really good to hear. I understand there are several different types of aphasia, which affect people in different ways. Is that correct? And could you tell me about one or two of the other types? I remember it would be better to... So we're not experts except in the sort of experience that we've had with aphasia over the last 10 years or so, but we do run a stroke support group as well, so we meet a lot of people with aphasia. And basically there are three different types. There's broccoli aphasia, which Sarah has. And broccoli was, I guess, the person that most discovered it when he did studies of the brain, and that affects your ability to express yourself. So Sarah has all the words in her head that she finds it hard to communicate them. And then there's a vernicus aphasia, which is a really strange sort of condition where you think you're speaking the right words, but they're coming out as jargon and not proper words. So it's quite an unusual type of aphasia, but that's called vernicus aphasia. And then there's primary progressive aphasia, which is a type of dementia, whereas people with broccoli aphasia tend to improve over the years if they work on that speech. Unfortunately, people with primary progressive aphasia will deteriorate, so it's a type of dementia where you probably won't recover from it, unfortunately. So you'll lose your speech over a number of years. So yeah, different types of aphasia, but it's all to do with communication. And what's the difference between aphasia and dysphasia? Well, technically, I think aphasia means you lose all your speech and dysphagia means that partial loss of speech, but aphasia is the term that most people use now to describe people to say they're as condition safe. And it's generally used, you do sometimes hear people using the word dysphagia, but normally people are described as aphasic. I see. And I just wondered if you could tell us about what we could do to raise more awareness of the condition? Well, I've tried to be raising awareness as much as I can. I do a new channel, YouTube, you get. But I've done also lots of interviews and things like that. Obviously, it's difficult when people have aphasia because obviously normally their speech is affected, so it's really difficult and people don't understand and sometimes people don't want to talk about it. But I remember when I had my stroke and I couldn't really say anything, I feel like if there was a person that could help me to raise awareness, it would help me. So that's why I kind of helped people. And about one in three people who have a stroke have aphasia. So there's quite a few, you know, hundreds of thousands of people really in the country with aphasia, but because it's very invisible, people aren't aware of it. And all people could have a stroke, even babies. I think people are saying, you know, I want to make people that have strokes, but I think people don't realise younger people could have it as well. It's important. Yeah, absolutely. Do you ever see it portrayed in the media also? A lot of people think that because of my speech that I'm some more stupid or I'm drunk a lot of the time. So if I go out and drink and stuff like that, I'm always very anxious to speak to people that I don't know, because maybe people would think that I had some, you know, just drinking too much, not because I have aphasia. I've got actually a card now and it says that I have aphasia and I have difficulty with my speech. So it's always there just in case, but I think just people don't understand what aphasia is. And I know it's difficult, but, you know, it would be very useful and people would be not there to go out if people realised what it was. And sometimes when you see people with aphasia or a stroke, I think there was a character in East London who had aphasia and they recovered after just a few weeks and that was unrealistic. I think it's about years for people to recover their speech with at all. So it would be really more perhaps a sort of mainstream coverage of people with aphasia. You Sarah, you featured on the second series of Undatables, which is a TV programme in the UK on Channel 4. Tell us a bit about that experience. It was interesting. Obviously I was single at the time, but it was more raising awareness than anything because I know that younger people watch the programme. So actually the people were really nice. They had cameras, but they were not big cameras. They were really friendly and obviously they didn't know what aphasia was, but they understand completely because I said this is the difficulty. Sometimes some days are bad than others, so maybe this day I'm not going to be very good to you, but I'll try as much as I can. They were really good. Yeah, it was a good experience and also having a stroke. I didn't really, I tried to do as much as I can going out and doing different things. So it was a good experience for me. Good to hear. What would you say to anyone out there that perhaps as a similar condition in these struggling and looking for support? I think there's a lot of support out there. I think when I had my throat, I felt like I was alone, which is not the case. There's a lot of people that have aphasia out there. It's just hard to find them. There's lots of groups actually in real life obviously at the moment because of the COVID maybe not, but there's lots of Facebook groups. There's lots of different ones and I went to lots of different groups. They were not as good, so we actually set up a group. So you can do that as well. Always talk to people. Don't be thinking that you're alone because you're not. It's a long journey, but I feel very happy. They don't feel like you're... You still get a lot of enjoyment out of life. It's not the end of your life having a stroke. It's more difficult. Absolutely. That's really good to hear. Are there any particular websites that you might recommend in terms of resources, useful resources? I think there's actually a worldwide one called Aphasia Recovery Connection, which also has a good Facebook group and different strokes as well. They're for sort of younger strokes survivors and there's lots of people there. And of course the Stroke Association. My podcast series is about neurodiversity. I guess neurodiversity is an approach to learning and disability that argues diverse neurological conditions are a result of normal variations in the human condition. What are your thoughts around kind of neurodiversity and the fact that we're basically leading towards a society where we're celebrating everyone's differences and trying to understand that everyone's brain works differently and actually that's okay? Yeah. I think that we all make judgments about people and quite often you're completely wrong. Like people think that Sarah's shy. In fact, she's not shy at all, but because of her lack of communication skills sometimes, she comes across like that. So I think people need to just give each other a bit more time and just be a bit more tolerant. And I think maybe COVID has sort of encouraged that a little bit, which is a good thing. But we've learned a lot since Sarah had a stroke that you've got to be a lot more accepting of people and a lot more tolerant and in some ways you say that it wasn't necessarily a bad thing that happened to you. Yeah. I always think that I've got lots of friends that have Aphasia now. I have more friends now than I had before my stroke. And obviously I think I'm actually more understanding of people now because I understand that it's difficult and that some people, you know, not because the people that have Aphasia, but other people, I understand that maybe people need to wait for longer and instead of just like, you know, talk, talk, talk all the time. You just need to wait and listen. And that's the most important. And obviously my speech is affected, but because you have Aphasia, you listen more because that's what you can do. Yeah, that makes total sense. And obviously listening is a powerful thing, isn't it? And there's so much power to simply just listening. And what's the best advice that someone ever gave you? Actually, I was not in the ring that my mum was talking to me about the end one. I was still in the hospital at the time. And one of the nurses, I think, was talking to my mum about it's difficult when you have Aphasia. And some of your friends will not be there anymore. But the friends that you're going to have later on that didn't know me before will just think this is Sarah. And it was a powerful thing to say. And I think at the time my mum was just upset that she said that. But it is true because I've got some friends that are still there before my stroke, but some people have gone and they're not really my friends anymore. But also, there's people that they didn't know me before. And they just think this is Sarah. This is what I... And you are a different person in many ways, aren't you now? Yeah. But they just think this is Sarah. And it's true. I've changed. But I'm still Sarah. Yeah. And a lot of people gave us advice not to give up hope because there's no plateau. A lot of people, older medical people, will talk about a plateau and say you can only recover like a year after a stroke or something. But we've been running our stroke group for over 10 years and we've seen people progress more in that time. So I think that's old fashion thinking. So it's really important to know that. Even doctors have said that, which is wrong because we know that's not correct. I think if you live with it, you sometimes know more than the professionals. Yeah. I can relate to what you're saying there. What's the future look like for you, Sarah? Well, I'm actually engaged at the moment. Congratulations. Thank you. So, hopefully, I'm doing the wedding sometime when we can actually book the place at the moment. But it's a good life. We're lovely to hear that. And it's been such a pleasure speaking to you both. And Sarah, especially despite your humility, you obviously have been doing extraordinary amount over the years. And to hear the great work that you're doing, my view is inspirational. Just keep up the good working and raising awareness of the condition. And yeah, pleasure to speak to you both today. Thank you. Thank you.