Speech pathology & inclusive communication (Smashing it after stroke)

This podcast was created and is hosted by Paul Burns, a young survivor of stroke. This podcast series is part of Stroke Foundation’s Young Stroke Project.

Special episode - Smashing it after stroke

Season 2 Episode 6, 16 April 2024 (Duration: 0:49:45)

Host: Paul Burns

Paul is back for a second season, this time talking to health professionals and industry leaders. Paul and his guests dive into current thinking on stroke recovery within their respective fields, what’s out there for those with invisible injuries and as usual, he picks up some tips and tricks along the way.

In this episode, Paul talks to to speech pathologist Emma Power. Emma is a clinician, researcher and Associate Professor at the University of Technology Sydney.

Emma and Paul talk about:

• What speech pathology is.
• Different communication and swallowing impairments.
• The value of communication partner training and where to get it.
• Practical tips to support people with different communication needs.
• Why communication accessibility and inclusivity helps everyone in the community.

Download an aphasia-friendly list of resources mentioned in this podcast (PDF)

Transcript

Announcer: The information provided in this podcast is general in nature and is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your doctor or other qualified medical professional. 

Paul: Hi there, my name is Paul Burns and I'm a young stroke survivor. On this season of Smashing it after stroke, I'm chatting with health professionals and industry leaders.  

We dive into current thinking on stroke recovery within their respective fields. What's out there for those with invisible injuries and as usual, pick up some tips and tricks along the way.   

My guest today is speech pathologist and Associate Professor Emma Power from the University of Technology in Sydney.

Emma's area of teaching and research includes stroke, brain injury and dementia. She also has many research interests, including communication partner training, technology and implementing communication best practice.

We chat about research into aphasia and mood post stroke, the do's and don'ts of how best to communicate with people who have challenges with communication. And we even touch on brain computer interface. So please enjoy this chat than I had with Emma.

Well, thank you very much for joining me today, Emma. I'm really excited to sort of get into the whole communication side of things and I guess get my nerd on a little bit, so I'll be certainly be.. I’m keen to chat, so thank you for making the time.

Emma: Well, thanks, Paul. I'm really excited to be able to talk about what we do and I think it's a really important contribution to the stroke space, so I'm excited as well.

Paul: Ah cool! The terms “speech therapy” and “speech pathology” seem, depending on the context and the country you're in, get thrown around a little bit. Is there a difference?

Emma: In a word, no.

Paul: The short answer.

Emma: The difference is really about the terminology that the country uses and different countries started out as “speech therapy,” that used to be the term. More “speech and language therapy”, because we don’t just work with speech, we also work with language.

And I suppose people started to use the term pathology because they wanted to sort of indicate that we also have a diagnostic and assessment focus of what we do. So, for example, in the United States, they call us speech language pathologists, speech language therapists in the UK and speech pathologists here. So basically it is the same thing, but different attempts to convey what we do from different places.

Paul: I guess speech therapy and, you know, when we talk about, you know, speech pathology kind of does feel like it's just about speech as well. But as I've spoken to other people, it goes a lot deeper than that, doesn't it?

Emma: It sure does. So, you know, I'm a speech pathologist. I'm also a researcher and I'm a clinician first. My role is to work in partnership with people with communication and swallowing impairments.

And that's another area that people don't always know us for. So we are really helping people to understand their impairments. That’s the diagnostic side. And then work with them and their family and friends and other professionals to facilitate improvement or better adjustment to communication and also just swallowing so people can participate in life and wellbeing.

So basically, we work with a range of communication impairments or disabilities and people have different terminology they like, or difficulties.

And so if you're talking about stroke, because the topic of our podcast is in that area, you can actually have a speech problem after your stroke where the muscles, just like in your arm or leg, the muscles are weak. Well, we have muscles controlling everything we do when we speak and also when we swallow.

And so you can have speech and swallowing problems from a stroke because the muscles have been affected and they're not strong enough and they can't be coordinated enough like they used to.

But you can also have trouble planning your speech. I don't know if you've ever got into a car that was like a European car and you actually went to do the indicators and your windscreen wipers are going, that's because you've got an automatic plan.

If we had to learn every time how to say our words and you know, think about it, we'd be just lost in anything that we do. So some people have problems with the motor plan and so they can sound more people with weak muscles sound slurred and hard to understand. People with a motor plan problem actually have trouble really just getting the words out and they seem stilted and can't always work out.. if I'm saying a “TER” I've got to work out when my tongue goes and that's all quite difficult.

But then on the other side of things is language.

You're using language when you emailed me and when you’re writing and you’re putting sentences and words down on the page, when we text, when we listen to something on the radio, this podcast, your listeners are using language.

So stroke can cause aphasia. Aphasia is one of the most common things that happens after stroke, and that is an impairment of basically your ability to say words, construct sentences, understand words in sentences and read and write, but also use numbers as well, which a lot of people have problems with. So, it's not a disorder of intelligence, of course, but it's the language.

So imagine if you go to another country and you can't speak the language. That's what a lot of people say they feel like. But when you're in that other country, you haven’t lost your intelligence. It's just hard for you to convey the things you want to do.

And there's a few other things, like your muscles can be working your vocal folds. So you and I are now vibrating our vocal folds together to make sound, but stroke can actually paralyse some of the muscles that help that process. And so people can have a whispered voice.

Paul: Okay

Emma: Last area is actually in terms of communication, is some people who have a right hemisphere stroke, they have more difficulties with the social interaction of language, the ability to put themselves in someone else's shoes, to understand intended meaning, and they can often become more talkative and talk more detail and longer, not recognising someone else needs a turn.

So when you think about it, you ask the question about, you know, you think of speech. But when I say all of that, you can say what a big breadth that is and that doesn't even include swallowing as well.

Paul: Yeah so how can speech therapists and speech pathologist help stroke survivors to improve their swallowing function?

Emma: Yeah, and that's something that, you know, I mentioned that we don't always think of speech pathologist working with swallowing.

But if you think about it, the muscles and the structures that we use to speak are also the structures that we use to chew our food and move it to the back of the throat so we can push it down. The idea is that we push things down into the oesophagus, not the airway. And that's why you cough when something goes down the wrong way.

Now, after a stroke, people will not be able to chew their food as well. The food might go down too quickly and they may not have the protection of their cough to actually protect their airway. And we know that people can get chest infections because of that and they have trouble swallowing their saliva. So speech pathologist are really important with swallowing.

It's best practice when someone has a stroke to see them in the hospital within 48 hours, assess their swallow. Is it safe? That's the first question we're asking. Is it safe? We don't want people to choke on their food, we don't want people to have what we call aspiration and food, fluid or saliva going down the wrong way.

And so then our job is to work out what can we do to keep you safe and then beyond that - food is not just being about safe and just purely nutrition. Food is about celebrations and taste and all the things that we love and also keeping us healthy. And so then what we try to do is work out ways to support the person to improve their swallowing, and that might be through slightly thickening fluid and puree.

There are people who think that that doesn't always help but for some people might be temporarily helpful, but what the main thing that we're trying to do is through the exercises, we're actually trying to improve people swallow so that I can swallow again more confidently and not be worried that things are going to go down the wrong way and be efficient, we don't want to take three hours to have a meal.

Paul: and I can imagine that must be quite the crossover because you've talked about food, and food is often a shared experience in many, many cultures. Then you've got, we've talked about communication.

Emma: Yes.

Paul: It all adds up to relationships, doesn't it?

Emma: That's right. I mean, we go out to dinner and we sometimes we go out literally because we need to put food in our belly.

But often we do that in a social way because it's you know, and culturally different cultures have lots of different priorities around food and how food is interacting with faith or, you know, celebration or key events in our life. And so food is really important. And people who have swallowing difficulties and can't eat the way they used to, that will affect their quality of life because of the things that you just identified.

So, yes, so our job is to try and maximize people's quality of life associated with their eating and drinking. And that is really an important part of our work. We know that often there's a range between, I think 50% to 75% of stroke survivors may have swallowing problems which we call dysphagia, with a “JAH”.

And ongoing, people you know, up to 50% of people can have difficulties too. So certainly that's an area that we also work with.

Paul: You know, we talked about aphasia. Is their subsets of aphasia? I may not be using the right terminology. And I'm coming from my own personal experience on this because, you know, some people, I guess, see the - ‘traditional’ might not be the right word - but the more common aphasia.

But then there's things where you can sound fine. But, you know, I've said headlight instead of traffic light, which is an analogy to a story I've told before. Are there other different types that people might come across, that may not be as obvious?

Emma: It's a really good question. So you're right, there are - we call them classifications or aphasia types - and actually your word traditional was exactly the right word.

A lot of people say we have some traditional aphasia classifications. Not everyone fits into all the boxes, but there are general patterns. We know that people can have trouble at the word level, right up to speaking just like you are, and then have trouble finding a word. So some people can't say any words very well or understand them or write them or read, but then other people..

So there's a very big range. Some people have very – they have non-fluent speech, so they understand most things, but they have trouble getting words out to the point that they have trouble even making sentences. And so they might only say the main words they can do.

So instead of saying “I'm going to the shops this afternoon”, they might say,

“Me. Shops. This afternoon.”

And so that is one type. When we say words, we don’t think about what we have to retrieve very much. But we do know, we've got this tip of the tongue phenomenon – “it’s just on the tip of my tongue”. And that is so excruciating for people with aphasia. And they have it all the time when we have it occasionally, sometimes.

And so some people can retrieve the word and go instead of saying “table”, they might say a “pable” and they've got the “PER” instead of the “TER”.

It's not a speech thing. It's actually language is how we, you know, we take all the sounds we need and we put them into words. And so it's not a problem with making the “TER” sound. It's actually just you grab the wrong letter that you needed.

So that's a phonemic paraphasia. You talk to me more about semantic paraphasia and what you just said before was sometimes something spits out that is a real word and it's in a similar category, but it's not the right word you want, which can be frustrating to people as well.

And then this for some people, they actually, you know, we call them neologisms. The word comes out so mixed up, it's really hard to tell that it's a real word. So yeah, so you have all these different sort of difficulties, but other people might have difficulties understanding and repeating what people say. Their speech comes out fluid. Some people call that word salad, but basically they come out and they're talking with a normal intonation just like you and I.

But the words are not all the right words. They’re selecting words that aren't quite right. And so it can be very hard to understand.

And then there's people that really do have quite severe impairments. I had a very good friend and colleague is a man who has what we call global aphasia, and he has trouble in reading, writing, talking and understanding.

He is the most amazing communicator though, and he comes and lectures with me to my class. And so language is something, part of it but communication is a bigger thing than language, because we can communicate in other different ways as well. But aphasia, yes, has different varieties, and some of them can be more difficult to understand and a less obvious.

Paul: I love that story you just told about that man that has these challenges and still getting out there and saying not only is he getting by on the day to day, but he's out there smashing it in a place where most people would find it absolutely nerve wracking. So, I love hearing those stories because I just think it gives people hope that there are other people out there doing amazing things despite their injuries or sometimes even because of them.

Emma: Yeah, I mean, it's a great motivator. He's a very good teacher and his daughter comes in as well to give us the other perspective of what is it like to communicate when, you know, Dad one day was able to talk really really well with her and then the next day nothing and she had to learn. Mind you, she didn't get a lot of help.

And that was a really bad thing for her. And now we're much more aware. We should always be providing family members with help to communicate because it's very frustrating. And if you think about it, communication is essential to everything you do - your relationships, your productivity in terms of work or volunteering, your identity and self-esteem, so it's the currency of relationships.

So I think we really have to be very progressive and very proactive about supporting people, not just the person who has a communication disability, but their immediate loved ones and families and friends so that they can maintain those relationships and participation together, despite difficulties with language or speech.

Paul: Do you have, or have heard of, people that have some of these difficulties? And, you know, we talked about paraphasia, are there other examples out there where sometimes people will say things and they think they will have said the correct thing, but the incorrect things come out?

I mean, I know that's happened to me, but sometimes I don't know if that's just me or if..

Emma: You’re really hitting the nail on the head. Basically, some people that will happen to with just the occasional word. And not even notice it because, you know, you have to have a system in your brain. Like if I asked you to repeat a word I said, you would have to be able to hear what I said and then say it back like you've got, you got a monitoring system that is listening to what you're saying to check that it's right.

And sometimes that doesn't always work as well. For people with wernicke aphasia, that very fluent aphasia where they have more trouble understanding, they often don't realise that there is like jumbled words coming out. And that can be a real challenge. We have to do a lot of educating of family and helping the person to, you know, really concentrate on monitoring what they’re doing.

And that can be quite challenging as well. But there's always a way.

Paul: What causes aphasia? What is it about the stroke that does this to people?

Emma: If we step back a tiny bit, there is actually a variety of things that cause aphasia. Because really it's about the language pathways in the brain. And the brain has pathways for moving, catching a ball, you know, reading and writing, talking, all of those things.

And the stroke happens to just, if it's often the left side of the brain, especially most of us in the world have our language pathways and centres focused on our left side of the brain. So if that happens, then sometimes it disrupts the abilities that we have to do that, and that might be to create a sentence or retrieve a word or to understand what someone else is saying and reading and writing.

So the stroke will damage areas that you have from your birth developed to actually learn and use language, in the same ways it might have starved oxygen to the parts of your brain that helps you move or help you remember. And so it just so happens that occurs. So if you had a tumor in a spot with the language pathways on it, that would cause aphasia.

If you have a traumatic brain injury in a car accident.. So I work with another colleague and friend of mine, Rosie. She was hit by a car on her bike and it hit her on the left side of her body. So she had all of the traumatic brain injury symptoms, but she also had aphasia. And even people with progressive thinking difficulties, which we call dementia, some there is a special type of aphasia, progressive aphasia that occurs in that case because the disease is starting in the area in the brain that is where the language pathways are seated, rather than the memory, which is typical in Alzheimer's.

And that's called primary progressive aphasia. You might have seen Bruce Willis in the news and he has that. So it's really important for your audience to realise that in stroke it's not a progressive dementia, that aphasia is a sudden onset one where you have the potential to improve. With the primary progressive aphasia, you still have the potential to improve, but it eventually has more challenges in terms of getting a bit worse. So those distinctions are very, very different things.

Paul: Okay. So is it a neural pathway interruption type thing? like I'm an IT guy and I've always described it to myself, it's like, you know, my hard-drive got fragmented to a point that I just can't access the things I need to access because the, the stuff is all sort of mish-mash, like the pathways from point A to point B, in order for me to access information, have gotten a bit scrambled.

Emma: I actually think there is truth in the analogy, and so sometimes you'll damage the part, like you'll actually damage Part A - the place you want to go is totally damaged. Or the vehicle thing that helps you get there is totally damaged. In other cases, the road is damaged and you can't get through, the signals can't get through.

So it's like a disconnection. And so it's possible in the brain, when we have a stroke or even other types of injuries, for us to really damage the actual centres. But they all are interconnected. And so sometimes, yes, you'll be disconnected so that bits can't talk to each other the way they used to. And that can produce different symptoms as well.

We're constantly working on our imaging studies, you know, MRI and different types of brain scans to really understand. Like static scans like just a, you know, basic MRI, but also scans of us doing tasks and saying things to understand how the brain works. And that's really important. It’ll also be really important in the future for prognosis, because one of the questions that people with communication and swallowing difficulties have, but also I imagine most other stroke survivors, is will I get better?

How long will it take? Will I get better fully? And we don't have great answers to that at the moment, but we're working on understanding how the brain works, how it repairs itself and neuroplasticity, so that we can give people better ideas about recovery, but also at the same time harness that for our treatments so that we help people, regardless of whether they've had damaged areas of brain or disconnected areas.

Paul: So are there new and exciting things that you guys are discovering in sort of research land that you're sort of getting into now? Are there any cool things on the horizon you can share?

Emma: I mean, there is an amazing amount of different things that are happening. I'm actually part of a research group in Australia that's headed up by Professor Miranda Rose at Latrobe University, and it's a government funded centre of research excellence for aphasia, rehabilitation and recovery.

And so we have seen a real boom in the last 15 years in aphasia research. And so there's a lot going on around this area and it ranges from, we’re helping people regain their language through really intensive and comprehensive aphasia programs to really looking at things like making people's mood better because we know that stroke survivors with communication impairments right and left hemisphere damage can have worse outcomes, may have more depression, less friends.

And also more difficulty participating. So we're doing lots of great research to help people get their language back and their speech. But we're also doing research on helping people manage it. You know, when it happens, people still have to adjust, they still have to think this is my new self. How do I see myself in the future?

And so there's also lots of therapies that are looking at mood. Now, if I say you need to have a psychologist, you might go, “yeah, sure, we'll do some talking therapy”.

But if you have a communication impairment, especially aphasia, talking therapies can be much more challenging. And so there's some interesting research in that area. There's research that is looking at, you know, the really on the horizon stuff is brain computer interfaces, where we, you know, we help people with speech who can't speak or have locked in syndrome.

Paul: Did you say brain computer interfaces?

Emma: Yes, I said brain computer interfaces. It’s one of the areas on the edge of our research field, where we're really starting to see more articles where people are thinking about, I mean, there's been some research where people have tried to see if they could move their hand with brain impulses. And so this is sort of a similar kind of thing.

And the focus is speech because speech is motor. And so that might help. The language is still okay and intact for people with just speech problems, but they're also looking at how we can, you know, think about using technology as well to support people with communication disabilities, even using generative A.I. So, you know, ChatGPT and things like that.

And how can people utilise that if a person can't make a full sentence, they might get help from ChatGPT to make the full sentence. But the problem is, is that might not fix, they might want to also fix and I use that word very, very sort of loosely. So there's ways we can get around the communication problem and there's ways we can improve so that you don't have as much communication problem.

And then there's how we help other people in society not make the communication problem such a bad thing for the person. And that's what we, so even some of our research is doing communication partner training and helping staff who work with people with communications disabilities, but also families, friends, the coffee shop owner, to say if you know about this and can help this person communicate well, then they can participate more in society.

So like we have wheelchair ramps for people with mobility. These are communication ramps. So some of our programs are looking at that. So we have interesting technological advances. We have practice therapy where you sit down and do lots of practice. You have groups where you get to know people who are like you and feel more comfortable.

We’re looking at supporting people's mental health. We're supporting people's ability to get around in the world and have the world be kinder to them and more inclusive. And so there's many different areas that we're working on in what we do.

I mean, I even work in sexuality. If you think about it, stroke can affect sexuality as well, and we communicate to express a lot of that.

And so you might think, what is a speech pathologist doing in that area? Well, again, that's an important part of life, you know, to engage in that, to consent to. How do you date? You if you can't talk as well as you used to. So I think that we have therapies that are across the spectrum. That are, you know, about practicing a lot because that's what it takes - hard work.

But also getting around it in really cool ways and also helping society know more about it so that the impacts are not so terrible.

Paul: Yeah I'd like to touch a little bit on that about society and how people can help people with communication. How are you guys getting the word out?

Emma: That's a really important thing. And we try very hard to increase awareness. And in fact, there's been studies about how much do people in different countries know about aphasia? Do they even know the word?

Because aphasia is actually quite common. There's 140,000 people in Australia, at least, with aphasia. And so we have to advocate at different levels. So they'll be just in the hospital making sure everyone in the hospital knows about this, what it means, what they can do to help, right up to working with communities, working with governments, like how to people who have communication difficulties ensure that they can vote, working with people in lots of different environments regarding like a museum or a coffee shop being inclusive and things like that.

So there's lots of different ways we in society can do that, but we do need to get the word out more and the more we have high profile people talking about aphasia, that quite obviously helps.

And we need to get more inclusive, like help people to be more inclusive for all people with disabilities. And so if you're really clever about supporting someone with a communication disability in your area, you're probably going to help a lot of people.

Because let's face it, if you had ever read the terms and conditions of any sort of mobile phone plan or anything like that, it's incomprehensible.

And so if we can start to think more inclusively for people with communication disabilities in society and raise the awareness, then we probably can help a lot of people. Literacy, people who come to Australia and don't speak a lot of English, all those things yeah, community is important.

Paul: I can imagine trying to deal with a language that isn't your first and having aphasia on top of that must be.. Wow. It's all I can say.

Emma: Yeah, it can be challenging and I don't know if you're aware though, but some of the literature says that if you're bilingual, you kind of get a bit of a boost from that, too.

And it's a bit protective because you actually are used to code switching. You’re used to flicking between two languages. You've got two different ways you can get a concept across sometimes. And so we know that being bilingual is.. can be a challenge or not having a strong second language and that can be difficult. Some people can have one of their languages a bit more affected, especially that's the one I learned more recently.

But there are also positives in that those people often are able to adapt quite well because they often are already using strategies to think of another way to say something or things like that. But yeah, it's very challenging and if you think about it from a society's point of view, if we are giving lots of information out and doing a good job at supporting their English, that's great.

But we also need to be able to do it in other languages. But if we do a good job, the people with aphasia who speak English will go some of the way to helping people who have aphasia, who speak other languages, because we're already making everything simpler, clearer, with more pictures and visuals as well.

Paul: So what are some of the dos and don'ts out there for, particularly for people that are trying to interact with someone that has aphasia or any other communication issue?

Are there things you should and shouldn't do?

Emma: There certainly are. And a lot of them. I mean, in society, we often, it's called accommodation – communication accommodation theory. What we do is we perceive how competent we think someone is and then we match our style to what we think that person needs.

And so you might have heard people say, “they talk to me like I'm deaf”.

“They talk really loud and slowly”.

Because the person's making a judgment that this person needs lots of help and is not as intelligent. And this drives people with aphasia and communication impairments, insane. It is really very, very difficult. And so sometimes we accommodate too much and we make people, we patronise, we make people feel bad and we don't want to do that.

And sometimes we accommodate too little, like if we see that they’re trying to gesture or write on their hand. So a man that I know that walks down my street has aphasia, and I always say hi to him and I said, “what's your name?”

Now, he couldn't tell me, but he could on his palm, with his finger, write the first few letters and then I guessed his name.

So if we don't go with what people can do, then that will not help them either. So basically what we say is the most important things are to use a normal adult tone of voice. Slow your speech down, not… like… that… Just pause more at the points where you’d usually pause and that just gives people time to process.

We want to give people more time to respond so that if it takes time for them to construct a sentence, that they have a bit of time to do it, or they might take time to write something down. So we want to give them more time, but we want to use other ways to communicate if we can.

So be patient, follow their lead, use a normal tone of adult voice. I think they're really important, basic strategies.

But we also have there are training programs out there that people can do, like a 40 minutes or a 2 hours, where you can learn more about how to communicate with people with communication impairments. And I'm very happy to provide those links.

Paul: Yeah, I was just going to ask if you could give some examples.

Emma: Definitely. And my team, along with the University of Sydney as well as the University of Technology Sydney, we've created a communication partner training program about this and acquired brain injury and it is online and it has lots of video and it has people with lived experience. One man has had a stroke, another person has a degenerative disease and a few people have had a brain injury, a traumatic brain injury, like from a car accident.

And we walk through good ways to actually communicate. And people with lived experience kind of give us the tips too, because they know and that's very powerful for people to do. And it's called “interact-ABI-lity” because the interacting is what we do together. There are also other programs out there specific to aphasia as well. So there are ways that we can learn that.

The basic thing is to try to talk to people like you would like to be talked to. And if you hear yourself starting to be a little bit condescending or your tone of voice is getting more childlike in how you’re talking to them, pull back or even say, “oops sorry, I slipped into something there”.

But also, you know, you can say to people, “I know you know, it's just hard to get the words out.” And that that's really validating to people to, you know, “I know you're not silly.”

Paul: “I know you know.” That's great.

Emma: Yeah, “I know you know” and “I know it's hard, but I'm trying.”

The other thing that we can do, I mean communications is two ways isn’t it? So I don't assume that because this person has trouble telling me something, that I'm perfect. I'm having trouble understanding, maybe I'm not good enough at understanding.

And so I'll often say, “I'm really sorry. I'm not getting what you're saying. I'll try harder. Can you say that again or say it differently?”

And so I take responsibility. I share it. We're a team. And so that's another way that you can really help. But definitely don't talk to their family member about them instead of to them.

I've heard that so many times, you know that people go, “oh they can’t answer or they’re having trouble, so I will talk to their partner about them in front of them.”

And that is really something that none of us want.

Paul: I think sometimes people don't know what to say. I think some and they feel, you know, they don't want to offend somebody, but they don't want to…

They just don't know how to handle it. And I think that creates a bit of awkwardness. And then the survivor gets a little bit and that creates more awkwardness and it just gets this big ball of “arghh!”

Emma: I know. And I think that's normal, isn't it? Like we’re a social species, we're built to try and save face.

Paul: Yeah.

Emma: Not have any awkwardness or conflict. And so, for example, when I'm talking to someone that's struggling, I might say, “Do you want me to guess or do you want me to wait?”

Paul: Oh that's good too.

Emma: Yeah. I mean, because they might, I might guess the wrong thing and take us.. and it might be frustrating. Or they might, that's what autonomy is.

So you know, people who've had a stroke or any type of disability, the best thing is that they have autonomy. They decide when they are going to be fully independent or if they are leaning on someone to get some help. They decide that. So I don't decide, I don't jump in. Ask.

And if I have a great deal of difficulty, so sometimes, Tom, the man with global aphasia who comes to my class, if I can't understand him, I never ever straight talk to his daughter. I always say, “Tom, I'm really struggling to understand, would it be okay if I got help from your daughter?”

And he’ll go, “yes, that's fine.” Because he's been asked. And I just didn't ignore him and go and do it.

Paul: Didn’t go around him.

Emma: Those things are really important. And so sometimes I think we can just say, or even I've talked to someone and I've said, “can you tell me how it's best for me to talk to you? Because I'm not sure what you need.”

I think we did that when we first met. I said, “is there anything you need in how I communicate with you for me to do that would help you?”

Paul: Oh yeah, yeah you did. Now you mention it, I remember at the time that was actually, I think the first time anyone's mentioned that to me and yeah, it was..

Emma: And it's not saying that you can't do anything, it's just saying if that's something that's affected you, then I want to be, I want you to control how I help you and tell me and help me to help you.

So and if you say then there's nothing I really need, then I go, “okay, cool”.

But yeah so I think we don't have to make it so awkward. I think we can and we use humour a lot. I don't know if that’s been part of your journey but people with aphasia are very funny and can actually really use humour well to diffuse the situation.

And sometimes I'll swear a bit, I'll say, “well, that was shit. I did a hopeless job at that, Tom. I'll try again”.

And then we laugh and then we move on. But it's really about that shared humanity. And I think that if we can use some of those techniques like “I know you know” or “do you want me to help or just wait?”

“How best can I talk or do you want me to try another way?” Then we can kind of actually maybe just have a better shared understanding.

Paul: Yeah, I guess don't assume, you're better off asking the question because there's not too many people that are going to get offended by being consulted right?

Emma: That's right.

And even if they are, well then, you know, we tried our best and, you know, that's their prerogative. And we don't want to be too inquisitive about people's health but what we're doing is saying whatever we can do to support them is what we're interested in.

Because I do know that stroke survivors can get tired of actually saying the same thing over and over again to people.

Paul: Yeah, and I think the other side of the coin, too, just from again, my own sort of lived experience is when you mentioned something to somebody like after, and I'm forever doing it I'm probably a little bit too self-deprecating on that front, but I forget that or I've messed that word up or something. And someone who's trying to play it down to be supportive says, “oh that's okay. I do that all the time as well.”

And you kind of go, yeah, I get it, but not like this. And it kind of takes a little bit of… it doesn't trivialise what I'm going through, but it makes it a bit weirder.

Emma: I agree. And I think again, it's about our social self trying to make us all the same and have a shared difficulty and the intent is often good, you're right, but it doesn’t always come across very well.

Word finding. So that's why I said before that the ‘tip of the tongue phenomenon’ and having trouble finding the words is not the same as the situation for a person with aphasia. One, it might only happen very rarely compared to them every time they try and talk. Two, my brain is still organised like it always has been.

And so how I can help myself when I have a problem is still all there. But for someone who's had their brain scrambled a bit by the stroke, you know, that's not the same as it used to be. To assume that all the things are the same of how they do things is not a good way to look at it, I don’t think.

I think we have to remember that people aren't working with the same systems that they used to have. Whereas my difficulties - I'm still working with the same systems I've got. I haven't had them damaged. And so we can sort of say we understand some of that, but we know it's not the same and that that person has it a lot more and I'm really, really sure that that person would find that really quite frustrating and I can't really fully appreciate that.

So that's the kind of thing I might say to that rather than, “oh it's just like when I do this.”

It's not just like that. My brain's different, their brains are different.

Paul: I used an analogy once upon a time about, you know, coming home to a house that the house looks the same on the outside, but all the furniture has been shifted around and I can't work the VCR anymore.

And it really is that sort of, like things are different here now and it's really hard to articulate.

Emma: Yeah and I think that… I think you should listen to that a lot more. And I think that's really important because you're having to sort of be a new self and adjust. And it is important that other people understand that it is not the same because I think that that's part of the issue.

I know people with brain injuries, like who’ve had a car accident, tell me people still say to me afterwards, “oh are you still not able to remember things?”

And that can be really you know, I mean, clearly, no, they can't. And they’re still in a wheelchair and they you know, they can't walk by now either. And so, yeah, I think sometimes our curiosity, ironically, our own communication is not always perfect when we're talking with people.

We don't self-regulate. We don't say, “if I say this, how will they feel if I say this?” Or we don't say that. The frontal lobe where that's working doesn't engage enough and we just go ahead and say what we're thinking. And then it actually is not always the best way. And that's why the things that you just talked about, people often complain that, you know, they're often having to reexplain.

“Yes, I still do have trouble remembering. No, I still can't walk.”

You know? And you're right, things are different.

Paul: An ABI is not just for Christmas. It's kind of life, you know?

Emma: It’s not for Christmas, it’s not one of those puppies.

And we know there’s hope. There is so much hope if we can do best practice - evidence based practice. We can provide people with a chance to improve their communication, or their swallowing.

We can give them supports to go around the difficulty when they need to. We can make the world a little bit more easier for them to participate in. We can take care of the people that love them so that they have skills too, you know.

It's not for Christmas, but maybe the Christmases will be better adjusted to and you can find your new self then. I think there is good hope for us too yeah, but it's hard to have that sometimes if people are not connected to services and supports, and the health system doesn't always allow that.

We know a lot of people who said it's like a black hole out there.

Paul: Yeah

Emma: You get discharged from hospital and then you're off a cliff. And we really have to work on that because it isn’t for Christmas. And so what about every Christmas after? That person still has to do all that they need to do and they need support to do it.

Paul: What can we do to improve that? I mean, that's a very open-ended question.

Emma: Look, I can wave my magic wand.

Paul: Yeah, I know, right?

Emma: I think we’re starting to be stronger about I mean, I think there are organisations that are really leading this. So as you may know, the Stroke Foundation is a peak body that is really supporting people to actually do better stroke care from prevention all the way through to the acute hospital setting through to rehab, and then also in the community.

In fact, the Stroke Foundation has often tried to provide priority grants for research that helps people after six months of their stroke, because we know that that area can be quite difficult. So I think we can get those organisations to keep on working in that way. There is an organisation, sorry I didn't say that very well, called the Australian Aphasia Association.

You might hear us say “the triple A” [AAA], and that is an organisation that is advocating and lobbying and trying to improve the support networks of people with communication impairment. And so I think that we need organisations to engage with policymakers and politicians so that we can actually support people better.

Another example is, I'm part of a large research group headed up by people at the Florey who are working on developing a Young Stroke Service for Australia.

And so what we know is that people often assume stroke is in older people when actually there's an increasing rate of stroke in young people. And so what we have to do is provide services in a community, like you said, helping that not being a cliff, and those services have to be matching what young people need.

And so we're working on making services that might focus more on the mood or the return to work and things like that as well. So we've got a bit of work to do, but every single person I believe, who leaves hospital with a communication impairment should at least know that they can contact the Stroke Foundation or the Australian Aphasia Association and that should be a minimum standard so that they can have autonomy to go and get some further help.

That's my perspective on that.

Paul: Yeah, and we've done it I mean, I've been involved with Stroke Foundation for a little time now and been involved in the Young Stroke Project, and it was one of those big drivers. I mean, when I was in at the ripe old age of 42, getting handed pamphlets with pictures of retirees on it.

Emma: Exactly! We're actually getting a project at the moment with this group of researchers and we are actually trying to work out how can we make the online platform that's going to help coordinate this service and all the materials on it reflective of young stroke survivors instead of older stroke survivors. Older stroke survivors deserve exactly the same treatment but the younger stroke survivors need to see themselves in the materials.

And so we're actually working with the Lived Experience Advisory Group on well what should some of that look like? There's lots of different things to weigh up. Should we do a drawing? Should we do photos? Should people with stroke in the photos? How do we represent some concepts for accessibility for communication as well? But how do we also get you to see yourself in that and have a positive image – a belonging?

Paul: Yes.

Emma: And so I actually think that that's really important as well. And you're right, we need to have a diversity of people and people with young stroke need to see other people with young stroke who are doing things.

Paul: Like any group of people, stroke survivors, you know, just because we've had a stroke doesn't mean we all have the shared same lived experience.

Emma: Definitely not and it's very different.

Paul: So I guess one of the questions I always ask everybody coming to the end is if you had one tip, one nugget of wisdom that you could offer, you know, someone that's just had a stroke or support crew, what would it be?

Emma: And you're asking a speech pathologist for one thing max, I think that’s very brave.

Paul: Well you know what, give us as many years as you've got I think because you know, any hints and tips that you can offer I think will be greatly appreciated by everybody listening to this.

Emma: I mean, when I think about it, I have to say there is hope. That would be my… this is what might be one of the lowest moments of your life. But there is hope, you can improve, with often hard work and support from other people and good evidence based treatments.

You can adjust to your new self and even try and you can actually really make a difference to other people as well in your future. You know, you can be smart, you can be wise, you can be helpful. And so I feel like the important thing is hope and that even though the journey might be challenging, we know that people can improve.

I've even got something here, maybe it might be interesting to actually hear it. It's from a client from one of our services that gave me permission to say, in our student clinic, he said:

“Dear Emma,

Two ago I started going to the Sprouts UTS Clinic via Zoom. I came to the clinic because I had a stroke eight years ago. I'm 48 years old.

When I started, I was speaking in one word answers and could barely speak on the phone. I could read a couple of words at a time. I couldn't write at all. Now I speak in full sentences. I can read full paragraphs. I can write full sentences. And I wrote this email in the session. I give my permission to use this story in your radio and podcasts.”

And so that’s Nathan, he said I could say that. So I want people to know that there is hope, that people will tell you after six months there won't be any improvement. We know that is not what most people have. People have improved it. You can continue to improve a long time after, especially if you get the right kind of support.

So that would be my thing is there is hope, we can find supports, you can adjust and you can still thrive.

Paul: Fantastic.

Emma: That doesn't mean it's not hard, but we are here to make this happen. Speech pathologists are extremely dedicated to supporting people. That's why we’re here. That’s why we do our jobs.

Paul: Look, I think that's probably a really good spot to end it on.

Thank you so much for your time, Emma. I really do appreciate, it's been a great chat and I think there's a lot of value in it.

Emma: Thanks, Paul. And thanks for giving me a chance to really come and talk about communication. It's such an important part of our lives, so I'm really grateful to have had the chat. It's been fun.