Aphasia

Episode 5, 29 September 2016

Read the podcast transcript below

Communication is a very important part of life. This means that losing the ability to speak can have very big impact. About one-third of stroke survivors have speech and language problems, such as aphasia.

In this podcast, we talk about what it's like living with a communication disorder and what can be done to help.

Our guests for this episode are:

  • Dr Miranda Rose, one of Australia’s leading speech pathology researchers. She is director of the Aphasia Lab at La Trobe University, where she studies the most effective ways to treat and manage aphasia.
  • Claire Hanney, who experienced aphasia after having a stroke twelve years ago. She’s since learned to talk again and now does public speaking.
  • Alana Stewart, a speech pathologist who in the past has answered questions on the Stroke Foundation’s StrokeLine. She currently runs the StrokeConnect Follow-up service in Victoria.

To take part in Dr Miranda Rose’s COMPARE trial, call 03 9479 2776, email compareaphasia@latrobe.edu.au, or visit the La Trobe University website.

Thanks to Allergan our enableme podcast partner.

On Friday 28 October we held an online chat on the topic of aphasia with the guests from this podcast. Download a transcript of the online chat.

Podcast transcript

Download the podcast transcript

Announcer: Welcome to the EnableMe podcast series where we bring together stroke survivors, health professionals and researchers providing you with practical advice to enable you on your journey to reclaim your life after stroke.

You can join the conversation at enableme.org.au.

This series is presented by Australia's national Stroke Foundation and sponsored by Allergan.

Chris: Communicating with other people is a very important part of life. Whether it's speaking, listening, reading or writing, losing that ability has a very big impact.

About one-third of stroke survivors have aphasia or other communication problems.

How do you cope if you have a condition like aphasia and how can you recover the ability to communicate? Today, we're going to try to find out.

We'll be speaking to aphasia researcher Dr Miranda Rose about the science behind treating the condition, and we'll talk to speech pathologist Alana Stewart about how to get help.

First though, we have stroke survivor Claire Hanney. She's a sport psychologist who experienced aphasia after having a stroke 12 years ago. She's since learned to talk again and now does public speaking. She joins us via Skype from England to talk about her experience.

Thanks for joining us, Claire.

Claire: Hi Chris.

Chris: Could we start by you telling us your stroke story?

Claire: Yeah certainly, that’s not a problem. I was actually ... I came over to Australia to do a Masters in Sports Psych. I was doing a practical and I was camping down on the Sunshine Coast.

I woke up one morning and things just weren't quite right. Let's put it like that. I had very little balance. I had slurred speech. Went to the doctor. The doctor sent me straight to the hospital.

The next day, I couldn't speak at all. I was then diagnosed the following day with having had a stroke. Three days later, I had no movement or feeling in my right-hand side.

They couldn't find what the cause was. I've always been quite fit, playing squash three times a week. I was fit. I'm actually vegetarian as well. I don't have salt in the house, wasn't overweight. Basically they had these five or six possible causes, all of which were a million-to-one.

I suppose I've been used to getting injuries. Using lots of hard work and practice and exercises and so on, was… I found it easier to do the physical side.

The difficulty for me was actually losing my speech. And as a psychologist, I suppose speech was quite important to me.

Chris: What sort of problems did you have with speech?

Claire: The sort of problems that I had is ... I mean, I was fortunate in a lot of ways in that it wasn't long after the stroke that I was able to get out a word, which was “hello”. The problems that I had was basically finding words was really difficult.

I have to say, the thesaurus was my… I love the thesaurus because it helped me to find words later on.

I had difficulties in pronouncing words. I knew what I wanted to say, so I could actually read in my head, but I couldn't pronounce things at all. I didn't trust what I was saying.

For example, there was one incident, I was asked, what would I like to drink. I asked for water and they came back with milk. Now I don't like milk and I'm saying, "I asked for water." There were, I don't know, four or five people around me and said, "Actually you asked for milk." I started not to trust what I said and obviously that then I lost confidence in speaking.

I suppose I lost confidence. I suddenly realised that I was different from other people and I looked at myself and thought, well I'm obviously disabled. I really stopped talking.

When I first had the stroke, couldn't speak, I really wanted to get better and to speak a lot. But losing this confidence and feeling that I was different from people, I became I suppose insulated, isolated. I did less. Life was no longer fun. I didn't go out. Became embarrassed when I had to speak. I would be thinking, “What are people going to say? What are they going to think about me?” Life became not much fun, really.

Chris: Did you find ways to communicate without speech at that time?

Claire: No. At that time really I didn't find other ways because I didn't want to look as though I was disabled, so I just didn't speak.

One of the things that I found quite difficult was that to start with, my motivation if you like, was to get back to where I was before, playing squash, being sporty and doing all those sort of things. That's what I thought was my motivation.

In actual fact, what it was, was that I was moving away from being disabled rather than moving towards. Though I suppose I was moving towards a bit where I was before.

But most of it was the fact that I didn't want to be disabled and therefore I would do whatever it took not to be that person.

Chris: You've clearly achieved a lot. What did you do to get the recovery that you've had?

Claire: I suppose I had to put myself in situations.

After that period where I just became sort of, I suppose in a way a shell, a mouse in the corner of the room, not saying much. I realised that actually that, for me, I had to take risks to put myself out there. That's a scary thing, really scary. What I found was that people around are really, in my experience, people have really been helpful.

I got better and better, and then I actually joined Toastmasters, which was very good for me. I actually said being in Toastmasters they were very supportive of me.

After joining them, I would stand up there shaking, hands sweating. You get through it and as you do more and you practice more, then you get more confidence and so on and so forth, until you get to the point where you can speak to people who you don't know and so on.

Chris: Are you happy with how you've recovered now, or do you still occasionally have problems, like when you're tired for instance?

Claire: Yeah. I suppose I'm comfortable in a lot of situations. There are times where I'm still not comfortable in a group of people I don't know. At that point, again I become that mouse just listening and not speaking. However, I still improve.

For example, the other day I spent time working out how to say the word psoriasis. It took me a while to kind of work out how to say that.

I take time to answer questions. I don't speak as fast or as well as a lot of other people. I also, as you say, when I'm tired. The other thing is when I'm anxious as well. In those sort of situations, I know that my brain doesn't ... Well my brain works fantastically for what it's been through, but I find it difficult to find words in those kind of situations. I suppose I feel that I'm quite blessed that I am able to communicate in a good way with other people and to get what's going on in my head out.

Chris: It sounds like you still challenge yourself a lot on purpose.

Claire: Yeah I do, because for me that's how you learn and how you get better to improve.

Chris: Have you found any things, like technology, have helped you or has that been a challenge to use that?

Claire: Probably 12 years ago there wasn't so much technology to be able to use. To a certain extent, I have not used those things because I didn't want to become dependent on them.

Because now I do some bush walking. A lot of people have said oh why don't you use sticks? I know if I use sticks then I'll be dependent on them, rather than helping myself to become more balanced again. I suppose technology for me, apart from the—I can't say it now—thesaurus I find that quite difficult to use technology because I don't practise, I don't use my voice again. I don't tend to use technology to assist me.

Chris: I really like the analogy with the sticks for walking. It's a good example. Do you have any other sort of recommendations or advice from your experience that you would give to other stroke survivors?

Claire: Yes I have. I think probably first of all is, in order to be able to speak again, really is to work out what motivates you. Why you want to speak again.

The second thing probably is to believe that you can speak again. That it is that you are able to speak, because I think everybody can.

Probably the next thing is, obviously coming from as a Sports Psych or being trained in Sports Psych, I used a lot of visualisation of me speaking, hearing those words in my head. So visualise yourself speaking and hear yourself speaking the words that you want to use. Then so much is practise, practise, practise. Just get out there and just speak to people.

I actually used to read aloud to myself, out loud obviously, in an evening for probably an hour-and-a-half just to practice. When I first started, I couldn't get past one or two words. But the more that you practice then the better it gets.

Also probably move out of your comfort zone if you can. Just taking baby steps each time. Then I think probably the other thing, I was in some ways blessed in that I could start from scratch using words that are a lot more empowering. For example, if you look, at let's say, wish, want, need or must. “I wish I could do something” rather than saying “I need to do something”, because that's much more powerful.

Chris: I think what you said about empowering words, I think that's useful to everybody whether they have aphasia or not.

Claire: Yes definitely. But I think the difference is, people who have aphasia, they will certainly... From my point of view, words become important to you when you can't speak them. You have the opportunity then to use words that are a lot more empowering. What I found is that using words like that actually opens up your world a lot.

Chris: Again, that's fantastic advice. Thank you again very much for speaking to us, Claire. I hope that you enjoy the rest of your time over there in the United Kingdom.

Claire: Thank you very much indeed. It's been nice talking.

Chris: Bye-bye.

Claire: Bye.

Announcer: When you or someone you love has a stroke, you are instantly bombarded with a whole lot of medical terms and it's pretty hard to take them all in. It's like learning a whole new language. To help you, we've created Strokesaurus: a glossary of stroke terms.

It's an A-Z guide of the language used around stroke, from atrial fibrillation to Webster Pack. It explains key terms in simple language. You can access it on your computer, smartphone or tablet at enableme.org.au.

Chris: Dr Miranda Rose is one of Australia's leading speech pathology researchers. She is director of the Aphasia Lab at La Trobe University, where she studies the most effective ways to treat and manage aphasia. Thank you for joining us, Miranda.

Miranda: Thanks Chris.

Chris: Why do some people have communication problems after stroke and others do not?

Miranda: Before I answer that directly, if it's okay, I'd like to just explain a little bit about what I mean by communication.

Chris: Okay.

Miranda: Because I think that's going to help listeners understand my answer.

When I'm talking about communication, I'm talking about a really broad range of activity. That includes things like being able to listen and understand other people's speech. It includes being able to talk, being able to read, being able to write. But also a really broad range of nonverbal communication, such as gesture and facial expression, tone of voice, our body postures and so on.

So when we think about communication, we need to think of that broad range of activity.

It also really helps to think about it in terms of why we're doing it. Really there's sort of two main parts of communication: to carry out transactions, so to do things like getting our physical needs met, banking, shopping, using transport, ordering in a café, these kind of physical transactions, but also interactions. Getting our social needs met, like sharing stories or telling each other what happened during the day, seeking support and validation for our actions or our ideas, and even things like revealing our personality and identity through the way in which we communicate.

When we think about communication, we're thinking very broadly and because of that these behaviours are underpinned by a really complex network of brain regions and not just located in one area of the brain.

When we think about why some people after stroke have communication problems and others don't, it's really to do with this complex network of brain areas that are linked up and that are responsible for all of those activities I just was talking about.

For example, a stroke might happen, there might be a blockage in a blood vessel or a bleed from a blood vessel into a particular area of the brain. That particular region might not have anything to do with any of those communication functions I just mentioned, or it might be really important for a whole range.

It's really dependent on which areas of the brain are impacted by the stroke and then how much of these networks are impacted as to whether someone has a communication problem or not.

Chris: So it can affect any of those aspects of communication that you're talking about, is that correct?

Miranda: That's absolutely right. Someone could have difficulties understanding the speech of others, but be able to talk and be able to read and be able to write. Conversely, someone might have really good understanding, good comprehension of what's being said to them, but have a little difficulty in finding words and a really major difficulty perhaps in reading and writing. Maybe some of the problems are very focused on processing nonverbal communication signals.

There's this really huge variety of ability and disability that we see after stroke, very dependent on the nature of the damage that's happened in the brain after the stroke. That can be mild through to extremely severe.

Chris: How about something like understanding numbers and/or individual letters, those sort of things?

Miranda: Again, it's a very common problem that people after stroke experience. There are networks in the brain that are required to be able to understand numbers and to carry out calculations, and similarly to be able to look at letters on a page and decode those letters into some sort of meaningful expression.

Unfortunately, these are common problems and they may be present in someone and not in another person, depending on where in the brain the damage has occurred.

Chris: We've had a lot of our listeners and our website users ask us questions. One question has been about Foreign Accent Syndrome. Is that a related thing to these other communication problems?

Miranda: Perhaps what I might also do before I get onto the Foreign Accent Syndrome question is just label some of these difficulties I was talking about, because Foreign Accent Syndrome relates very particularly to one.

When we're talking about language problems, we're primarily talking about a condition called aphasia. If you have difficulty with language, that is, the symbols that we associate with the meanings of words and the way in which we put words together in sentences and so on, the grammar behind our communication, we are talking about aphasia. You might have difficulty understanding what's being said to you or being able to say something to someone else, because you can't access language in the way that you used to.

I think the easiest way for people who are not familiar with aphasia to really get a sense of that, is to picture themselves in a foreign country where they don't speak the language. I don't know, Chris, for you if that's Japan or Russia or wherever it is that you don't speak the language.

Chris: Pretty much anywhere I think.

Miranda: Okay. Let's put you in Russia today. If you're in Russia, you're still Chris, you're still thinking, you still have needs and wants, but when you go to express those ideas to someone in a shop, you don't have the language symbols of Russian and you can't turn your thoughts into language and words.

Your muscles of your throat and mouth and so on are fine. You can make sounds. Not that you can't speak, but you don't have access to language. That's what is happening in the condition called aphasia. It's a language problem.

The other two that are really common in people after stroke: dysarthria and dyspraxia. Dysarthria is a motor speech problem. This is where the musculature that we use to be able to speak is weakened or is not able to be coordinated well because of the brain damage. Someone may not be able to say any sounds at all, speak at all, because they can't get those muscles to work or they might have a mild problem and they sound a bit slurred. It might take them a long time to be able to get their words out.

The final one is, as I mentioned, dyspraxia. This is a really difficult one to explain, but basically in dyspraxia the muscles are fine, the tone of the muscles good. But when you are trying to make the plan for making the coordinated actions that are so complex in something like speech, when you're making those plans there's a problem. The brain can no longer make the motor plan.

I'm telling you all of that because you asked about Foreign Accent Syndrome. And our current understanding of Foreign Accent Syndrome is that it's very related to the dyspraxia. The condition I just spoke about last there, where we're trying to make the coordinated detailed movement plans of the hundreds of muscles that are involved in speaking.

In Foreign Accent Syndrome, it's thought that these plans get slightly distorted to the point where it sounds like the person's speaking with an accent. Yes, it is related. It's quite a rare condition and it's best understood as relating to difficulties in getting the speech musculature to behave in the way that we want it to, in a smooth and coordinated way.

Chris: Given that it involves all these muscles that drive speech as well as the parts of the brain, I'm wondering how this compares to other sorts of stroke recovery. Because we're often told that you get your most recovery in the first few months after a stroke. Does this apply to communication in general as well, or does it take many years to recover?

Miranda: I'm so glad you've asked me this question, because if there's one thing I would love listeners to be able to remember from this podcast is this fact. This fact is that communication can keep improving as long as we're alive. That's true of someone who hasn't had a stroke as well as someone who has had a stroke.

The brain is an incredibly plastic organ, with incredible capacity to be changing and changing very specifically in relation to activity that we're doing.

The notion of experience-dependent plasticity, what we do and what we practice and what we focus on impacts the connections in the brain and makes us more able to do certain activities.

With someone after stroke, there's definitely an initial process of healing that's going on as the brain's settling down and reacting to cleaning up the damage, if you like, of the stroke. People call this period of spontaneous recovery. It is true that there's a lot of that activity happening in the first six months after stroke, but it is not true that recovery stops then.

In fact, experience-dependent plasticity and recovery has been demonstrated well, well beyond that. We have plenty of literature in the speech pathology stroke literature that documents people of 15 and even 20 years after their stroke still making significant changes in their communication.

It's a very important piece of information for people to hear, that there is hope and that this idea of everything happening, every bit of recovery that's going to happen, happening in the first six months is absolutely incorrect.

Chris: On the other hand, we've also had some people tell us that they feel they get worse after a number of years. Can that happen as well?

Miranda: Yeah. It's not as common a story in my experience and in the literature, this idea of people getting worse over time. In the literature that I have seen, it so often seems to be related to general physical wellbeing. So other factors such as general physical wellbeing or changes in mood or changes in stress level, that impact the person's capacities and sense of ability.

The other thing that is very important in the communication space, Chris, is that if we're not communicating, if we're not rehearsing these communication skills, they will get worse. Over time, if you don't engage in communication, it won't be getting better. This is this experience-dependent plasticity idea that we were mentioning earlier.

If people are getting worse, the first thing that they'd be wanting to do is to check their general physical wellbeing, be thinking about changes to mood or stress level, but also are they actually engaging in these activities.

Chris: Interesting. I want to ask more about the mood and stress there. Because things like fatigue and anxiety seem to affect people's ability to communicate as well. Are these known factors?

Miranda: Yes, they absolutely are known factors. Fatigue will make any function more difficult. Because communication's such a complex task, if we think about expressing an idea to someone, we've first of all have had to have generated this idea; we've got to turn that thought into language and nonverbal signals; we've got to translate that language into speech and gestures; and then we've got to actually physically produce the words, sentences, gestures and tones.

When fatigue levels are really high, these systems, these complex systems, might just not get the required energy and focus that they require and then fail. I'm sure people who haven't had a stroke are very aware that when they're tired or when they're mentally fatigued, they'll often be quite a lot worse at thinking of people's names for example. That's a very simple example of how we need cognitive resource in order to be able to communicate well. But fatigue's absolutely an important factor.

The other one you asked about Chris is anxiety. Unfortunately, we know that people after stroke have high levels of mood changes. Depression and anxiety are two mental health issues that are unfortunately very common in people after stroke. We think maybe even more common in people with aphasia after stroke.

Anxiety will absolutely get in the way of clear communication. We unfortunately really need to be doing a lot more work in this space. The research is quite sparse to help us understand this problem as well as to be identifying interventions that are suitable for people with stroke and communication problems.

Chris: Speaking of research, could you tell us a bit about some of your own work that you're doing at the moment?

Miranda: Yeah, I'd love to. How long have we got?

Chris: As long as it takes.

Miranda: I've been researching in post-stroke communication disorders actively now for close to 20 years. At the moment, the main focus for our team is on two main things. One is trying to find an effective treatment to reduce the severity of aphasia after stroke, so the language based communication problem. But also for those people who are living long term with aphasia, we're researching ways in which we can enable people to have a better quality of life.

If it's okay I'll spend most of the time I think we've actually got talking about the first goal, which is finding effective treatments to reduce the severity of aphasia.

The big trial we have running at the moment is called COMPARE. Is it okay Chris if I tell you a little about that?

Chris: Yes. I'm very interested to hear about that one.

Miranda: I'm the director of this trial. It's a National Health and Medical Research Council funded randomised control trial. This is a large-scale study that's going to recruit 216 people who had aphasia after stroke. These people need to be between six months after stroke through to 15 years, so it's a wide length of time after stroke. It's a national trial, so we're operating right across the country.

The aim of the trial is to try to find out a couple of treatments, which I'll talk about in just a moment, are going to work for a broad range of people with aphasia.

We want to know if one treatment's better than another for certain subgroups of people with aphasia and what the characteristics of those people are that do well with the treatments, as opposed to doing poorly with them.

Finally, we're really interested in the cost-benefit of these treatments. Looking at, if they were to roll out across Australia, what the costs would be and what the benefits to our society would be in rolling them out.

The two treatments that we're investigating in this trial are called Constraint Induced Aphasia Therapy, or CIAT, and the other one is Multi-Modality Aphasia Therapy, or MMAT. I'm just going to say CIAT and MMAT from now on because it's such a mouthful.

Both CIAT and MMAT involve intensive talking practice. The practice happens in small groups of three people with aphasia and a therapist together. The talking targets, the activity that people are doing in these groups, involves everyday words and phrases and sentences. These are generated by the participants looking at pictures of objects and actions that generate these words and phrases and sentences.

The interaction that's going on in the small group is a game-based social activity and it's very highly motivating, quite a lot of fun and laughter's going on in this therapy. The talking targets are adjusted for each person's level of ability, and then the therapist helps the person with aphasia to produce these targets if they need help. The treatments are run for three hours per day, five hours per week for two weeks. It's a 30-hour dose of treatment.

The interesting thing about the two treatments, CIAT and MMAT, is how they differ. They differ in the way that the therapist helps the person with aphasia make the words.

In CIAT, the therapist will say the word and show the written word to the person, so the person can say it aloud if they haven't been able to.

In MMAT, the therapist gets the person to make a gesture associated with the word they're trying to say, to draw this word and to read and write the name of the word, and then say the word aloud copying the therapist's model. The treatments are quite different in the way in which the person with aphasia is being helped.

Chris: The constraint induced aphasia therapy, that's the CIAT one. That's the one that people may have read about in things like Norman Doidge's book about the brain rewiring itself.

Miranda: Exactly, yeah.

Chris: I guess what you're doing is trying to find out whether that is really the best way to treat aphasia, or if using gestures is a good way to go as well.

Miranda: In the Norman Doidge book, the reader is introduced to the idea of learned non-use. The idea in learned non-use is that if we have a function...

Let's take it away from communication for a moment because sometimes it's a bit easier to understand these ideas when we're thinking about the motor system. With learned non-use, if we take a function like reaching and grasping with the hand, the idea is that it will get worse. Reaching and grasping will get worse if we don't keep doing that action.

In the case of a person after stroke, for example, they might have difficulty now with their right arm not working after the stroke, so they might favour using their unimpaired left arm for all their reaching and grasping tasks. Then the impaired right arm becomes even more impaired through not using it. This is called this notion of learned non-use.

Some researchers have applied this idea of learned non-use to talking and communicating, and they suggest that the best aphasia therapy will focus solely on talking and therefore should not include cues and supports that involve communications functions other than talking. For example, gesture, reading, writing and drawing, because that's a kind of way that we might establish learned non-use.

But it's really not so clear in the field of communication, because as I said before, of the complex nature of how the brain networks are for communication. In fact, there's good evidence that the therapies that use a range of cues, including gesture and reading and writing, have been able to reduce severity of aphasia, and there's absolutely no direct evidence that they're harmful. In fact, there might be the possibility that some people with certain kinds of aphasia, for example people with very severe aphasia, actually require these multi-modal cues to benefit from the talking practice.

The COMPARE trial is exciting I think because it's going in to directly address this question. What happens when we just focus on talking in CIAT therapy and what happens when we involve the broader range of communication activity, such as gesture and reading, writing and drawing in the MMAT. It puts these two treatments up head-to-head in a very controlled trial. I'm really looking forward to seeing the results in two years’ time, Chris.

Chris: It does sound very exciting. How can people take part if they want to be a part of this research?

Miranda: Our telephone number is in Melbourne, so 03 9479 2776. But you could also email us on COMPARE, the word compareaphasia, that’s one word, compareaphasia@latrobe.edu.au. Or you could go onto our website at La Trobe University and if you put in COMPARE you will come to our web page. You can just put it into a Google search engine and it'll come up as well.

We're operating all over Australia. Currently we've got groups beginning in Melbourne, Sydney and the Gold Coast and Brisbane. But we'll soon be operating in Newcastle, Adelaide and Perth, in Hobart, and we'll hope to begin in regional centres next year. Plenty of opportunity for people all around Australia to get involved.

Chris: Thank you very much for speaking to us. This has been very educational.

Miranda: It's been a pleasure!

Chris: That was Dr Miranda Rose from La Trobe University.

Announcer: Setting goals is crucial to stroke recovery. Goals can be as simple as walking to the letterbox to check the mail, or bigger goals like getting back to work.

EnableMe has a unique tool where you and your carer or family can plan what you want to achieve, track how you're progressing, and celebrate your successes.

You can also connect with other people who set goals similar to yours and challenge or inspire each other.

You can even set up a blog to write on how you are feeling and share your own story.

And don't forget, our professionals from StrokeLine can help with personalised and confidential advice to help you grow stronger after stroke.

Visit enableme.org.au.

Chris: Finally today, we have Alana Stewart. Alana is a speech pathologist who you may have heard on the Stroke Foundation’s StrokeLine. She currently runs the Stroke Connect Follow-up service in Victoria. Thank you for coming in, Alana.

Alana: My pleasure, Chris.

Chris: You're a speech pathologist; what do speech pathologists actually do?

Alana: That's a very good question. Miranda has covered this, but just to give you a quick summary, we diagnose and treat communication disorders and that includes difficulties with speaking, listening, understanding, reading, writing, social skills, voice and stuttering. We work with both adults and children in a variety of settings, like schools, hospitals, private clinics or in people’s homes.

Chris: That is a very wide range. I understand you also work with swallowing problems as well.

Alana: Yes we do. We work with people who have difficulty swallowing food and drink safely, and we provide exercises, strategies, or in some cases we modify the consistency of a person's food or drink.

Chris: Is that because it's all related to the same muscles in the same part of the body...

Alana: Yes, you're right. Yeah. Even though the profession name doesn't in any way allude to swallowing, that is our area.

Chris: That's very important too. In terms of communicating, a lot of people talk about how frustrating it is when they can't communicate. This affects their communicating with their carers or loved ones, also with people they have to interact with in the community and sometimes even the health professionals that they deal with. How should people deal with it when they have a communication breakdown?

Alana: Most of us have experienced some form of communication breakdown, where either you can't make yourself understood or you can't understand what the other person is saying. It's extremely frustrating for both the person with the communication difficulty and their communication partner.

I've got a few ideas or suggestions. The first one would be carrying a card on you that explains what aphasia is and how it affects you. That way you can hand it over to your communication partner and educate them.

The other suggestion is letting them know that you need more time to get your message across, so that they can take the pressure off you and you'll feel more relaxed to express what you're wanting to.

The other suggestion is telling them how they can help you get your message across. That may be them speaking in shorter sentences, speaking more slowly or focusing on key words.

A couple of other suggestions are, if you have a communication book or a device, do make sure that you take that with you when you're out, say visiting your GP or going to the supermarket.

The other idea is to have a carer or friend accompany you, so that they can be your advocate and help you when that communication breakdown occurs.

Chris: Now, you mentioned using a device there. Are there any particular devices or apps that help people with aphasia?

Alana: There's a number of different types of communication disorders and they vary in severity, as Miranda spoke about earlier, and this obviously affects what device is suitable for which person. We strongly encourage that the speech pathologist actually does an assessment to match you up with the most suitable device or application.

If you head onto our EnableMe website, in our What Helps section you'll find some apps and suggestions there. Otherwise, give us a call on StrokeLine, where you can speak with a speech pathologist directly and they can support you in finding the best thing.

Chris: I guess the other side though of using technology, like an app or a computer even, is that sometimes the aphasia can make it more difficult, like using a keyboard or remembering a password, that sort of thing. What can people do about those issues if they're relying on the technology to stay connected?

Alana: There are a lot of barriers to using technology, as you say. The best person to work through those barriers with you is an occupational therapist and/or a speech pathologist. Accessing those services can be done via your GP. If you feel like you're needing some help in accessing the services, do call us on StrokeLine again and we can point you in the right direction.

But there are things, like different types of keyboards or computer screens, that can be purchased, different types of mobile phones that are more accessible to somebody with a communication difficulty. So don't let it stop you from accessing that technology.

Chris: I'm glad you mentioned this issue of getting help, getting someone to help you with this, because this is another thing that we often hear. As Miranda has said, it can take years, you can get better after many years. But people often find that they get a lot of help initially and then that sort of tapers off too.

So where can people continue to get help? How can they find someone to help them, if say it's years after their stroke and they don't know who to talk to?

Alana: We do hear this very often from stroke survivors. What do I do when that initial therapy finishes? How do I keep practicing my communication?

I think it's really important to remember that the best way to practise talking is actually talking. So finding yourself a communication partner, it may be a friend, it may be somebody that you talk to over Skype that lives on the other side of the world, and creating some kind of routine where that communication is part of your everyday life is really important and getting those hours of practice in.

There's obviously the EnableMe site that we mentioned previously that has research opportunities, studies that people can participate in. You can speak to your GP about accessing some subsidised Medicare sessions through the Chronic Disease Management Plan. Again, call StrokeLine if you need some help with that one.

Alternatively, they may be able to refer you back to the public health system to a community rehab program. Even years down the track, you may still be eligible for services.

My last suggestion is a lot of the universities run student-led clinics, where speech pathologists in training can deliver therapy to people in the community under supervision.

Chris: People can contact a university for those sort of services and also I suppose to get research projects that they can take part in?

Alana: Yes, absolutely.

Chris: We heard about Miranda's trial earlier, but there are other ones around Australia that people can join up into?

Alana: Mm-hmm (affirmative). I guess I'm just encouraging people to use their imagination. Think about how you can inject some more communication opportunities into your day, writing in a journal, texting a friend, talking on the telephone, saying hi to the checkout chick at the supermarket.

Chris: I guess there is also an aphasia community that people can be part of and get help from other people who have the same experiences.

Alana: Aphasia groups provide a wonderful opportunity for those with a communication difficulty to get together, to communicate with one another, to build confidence in a non-judgmental environment. Often these are run by a speech pathologist.

I'd strongly encourage you to head onto our website, for those listeners out there, and have a look at the list of aphasia groups and find the one closest to them. I've run communication groups for a number of years and it's extremely rewarding to see the relationships that are made in those groups and the communication improvements that people experience.

Chris: Thank you very much, Alana.

Alana: My pleasure.

Chris: That sounds like very good advice. Yes, definitely go to enableme.org.au where you can find some aphasia services and resources and other research services, those sort of things. There also is an easy-English setting on EnableMe for people who have trouble with aphasia.

And of course you can speak to a health professional on StrokeLine. As Alana mentioned, you can talk about aphasia or any other issue. You can call StrokeLine on 1-800-787-653 or 1-800-STROKE.

Announcer: At Allergan we know every stroke is different and so is every recovery. After stroke, many people have muscle weakness and loss of movement. But you might also be experiencing tight muscles or stiffness in your arms, fingers or legs. It's called spasticity.

You might have muscle spasms or uncontrollable jerky movements in your arms or legs, changes in your posture, or unusual limb positions, and it can cause pain. It can be treated though. Physiotherapy or occupational therapy can help you adapt and improve your movement.

There are other possibilities too, such as injections with botulinum toxin type A, electrical stimulation of the muscles, electromyograph or EMG biofeedback and muscle relaxing medication.

What is important is to start your rehabilitation as soon as possible after a stroke and to discuss your goals and progress with your rehabilitation team at every stage.

Allergan is proud to bring you this EnableMe podcast.

Chris: That's all we have time for today. Now if you like what you've heard, you can help us out by giving us a good review or a good rating on iTunes. So if you're listening through iTunes, please give us a good rating.

Thank you once again to our guests today. We've had Claire Hanney, Dr Miranda Rose and Alana Stewart.

Announcer: That's all for today's EnableMe podcast. You can find out more on this topic and continue the conversation or listen to other podcasts in this series at our website enableme.org.au.

It's free to sign up and you can talk with thousands of other stroke survivors, carers and supporters. We also have health professionals from StrokeLine who can answer your questions and give evidence-based advice.

The advice given here is general in nature and you should discuss your own personal needs and circumstances with your health professional. If you would like to suggest a topic or provide feedback, contact us via the website enableme.org.au.

The music in this podcast is “Signs” by stroke survivor Antonio Iannella and his band The Lion Tamers. It was recorded at Antonio's studio which you can find out more about at www.studiofour99.org.au.

This EnableMe podcast series is produced by the national Stroke Foundation in Australia with the support of Allergan.

Aphasia

Episode 5, 29 September 2016

Read the podcast transcript below

Communication is a very important part of life. This means that losing the ability to speak can have very big impact. About one-third of stroke survivors have speech and language problems, such as aphasia.

In this podcast, we talk about what it's like living with a communication disorder and what can be done to help.

Our guests for this episode are:

  • Dr Miranda Rose, one of Australia’s leading speech pathology researchers. She is director of the Aphasia Lab at La Trobe University, where she studies the most effective ways to treat and manage aphasia.
  • Claire Hanney, who experienced aphasia after having a stroke twelve years ago. She’s since learned to talk again and now does public speaking.
  • Alana Stewart, a speech pathologist who in the past has answered questions on the Stroke Foundation’s StrokeLine. She currently runs the StrokeConnect Follow-up service in Victoria.

To take part in Dr Miranda Rose’s COMPARE trial, call 03 9479 2776, email compareaphasia@latrobe.edu.au, or visit the La Trobe University website.

Thanks to Allergan our enableme podcast partner.

On Friday 28 October we held an online chat on the topic of aphasia with the guests from this podcast. Download a transcript of the online chat.

Podcast transcript

Download the podcast transcript

Announcer: Welcome to the EnableMe podcast series where we bring together stroke survivors, health professionals and researchers providing you with practical advice to enable you on your journey to reclaim your life after stroke.

You can join the conversation at enableme.org.au.

This series is presented by Australia's national Stroke Foundation and sponsored by Allergan.

Chris: Communicating with other people is a very important part of life. Whether it's speaking, listening, reading or writing, losing that ability has a very big impact.

About one-third of stroke survivors have aphasia or other communication problems.

How do you cope if you have a condition like aphasia and how can you recover the ability to communicate? Today, we're going to try to find out.

We'll be speaking to aphasia researcher Dr Miranda Rose about the science behind treating the condition, and we'll talk to speech pathologist Alana Stewart about how to get help.

First though, we have stroke survivor Claire Hanney. She's a sport psychologist who experienced aphasia after having a stroke 12 years ago. She's since learned to talk again and now does public speaking. She joins us via Skype from England to talk about her experience.

Thanks for joining us, Claire.

Claire: Hi Chris.

Chris: Could we start by you telling us your stroke story?

Claire: Yeah certainly, that’s not a problem. I was actually ... I came over to Australia to do a Masters in Sports Psych. I was doing a practical and I was camping down on the Sunshine Coast.

I woke up one morning and things just weren't quite right. Let's put it like that. I had very little balance. I had slurred speech. Went to the doctor. The doctor sent me straight to the hospital.

The next day, I couldn't speak at all. I was then diagnosed the following day with having had a stroke. Three days later, I had no movement or feeling in my right-hand side.

They couldn't find what the cause was. I've always been quite fit, playing squash three times a week. I was fit. I'm actually vegetarian as well. I don't have salt in the house, wasn't overweight. Basically they had these five or six possible causes, all of which were a million-to-one.

I suppose I've been used to getting injuries. Using lots of hard work and practice and exercises and so on, was… I found it easier to do the physical side.

The difficulty for me was actually losing my speech. And as a psychologist, I suppose speech was quite important to me.

Chris: What sort of problems did you have with speech?

Claire: The sort of problems that I had is ... I mean, I was fortunate in a lot of ways in that it wasn't long after the stroke that I was able to get out a word, which was “hello”. The problems that I had was basically finding words was really difficult.

I have to say, the thesaurus was my… I love the thesaurus because it helped me to find words later on.

I had difficulties in pronouncing words. I knew what I wanted to say, so I could actually read in my head, but I couldn't pronounce things at all. I didn't trust what I was saying.

For example, there was one incident, I was asked, what would I like to drink. I asked for water and they came back with milk. Now I don't like milk and I'm saying, "I asked for water." There were, I don't know, four or five people around me and said, "Actually you asked for milk." I started not to trust what I said and obviously that then I lost confidence in speaking.

I suppose I lost confidence. I suddenly realised that I was different from other people and I looked at myself and thought, well I'm obviously disabled. I really stopped talking.

When I first had the stroke, couldn't speak, I really wanted to get better and to speak a lot. But losing this confidence and feeling that I was different from people, I became I suppose insulated, isolated. I did less. Life was no longer fun. I didn't go out. Became embarrassed when I had to speak. I would be thinking, “What are people going to say? What are they going to think about me?” Life became not much fun, really.

Chris: Did you find ways to communicate without speech at that time?

Claire: No. At that time really I didn't find other ways because I didn't want to look as though I was disabled, so I just didn't speak.

One of the things that I found quite difficult was that to start with, my motivation if you like, was to get back to where I was before, playing squash, being sporty and doing all those sort of things. That's what I thought was my motivation.

In actual fact, what it was, was that I was moving away from being disabled rather than moving towards. Though I suppose I was moving towards a bit where I was before.

But most of it was the fact that I didn't want to be disabled and therefore I would do whatever it took not to be that person.

Chris: You've clearly achieved a lot. What did you do to get the recovery that you've had?

Claire: I suppose I had to put myself in situations.

After that period where I just became sort of, I suppose in a way a shell, a mouse in the corner of the room, not saying much. I realised that actually that, for me, I had to take risks to put myself out there. That's a scary thing, really scary. What I found was that people around are really, in my experience, people have really been helpful.

I got better and better, and then I actually joined Toastmasters, which was very good for me. I actually said being in Toastmasters they were very supportive of me.

After joining them, I would stand up there shaking, hands sweating. You get through it and as you do more and you practice more, then you get more confidence and so on and so forth, until you get to the point where you can speak to people who you don't know and so on.

Chris: Are you happy with how you've recovered now, or do you still occasionally have problems, like when you're tired for instance?

Claire: Yeah. I suppose I'm comfortable in a lot of situations. There are times where I'm still not comfortable in a group of people I don't know. At that point, again I become that mouse just listening and not speaking. However, I still improve.

For example, the other day I spent time working out how to say the word psoriasis. It took me a while to kind of work out how to say that.

I take time to answer questions. I don't speak as fast or as well as a lot of other people. I also, as you say, when I'm tired. The other thing is when I'm anxious as well. In those sort of situations, I know that my brain doesn't ... Well my brain works fantastically for what it's been through, but I find it difficult to find words in those kind of situations. I suppose I feel that I'm quite blessed that I am able to communicate in a good way with other people and to get what's going on in my head out.

Chris: It sounds like you still challenge yourself a lot on purpose.

Claire: Yeah I do, because for me that's how you learn and how you get better to improve.

Chris: Have you found any things, like technology, have helped you or has that been a challenge to use that?

Claire: Probably 12 years ago there wasn't so much technology to be able to use. To a certain extent, I have not used those things because I didn't want to become dependent on them.

Because now I do some bush walking. A lot of people have said oh why don't you use sticks? I know if I use sticks then I'll be dependent on them, rather than helping myself to become more balanced again. I suppose technology for me, apart from the—I can't say it now—thesaurus I find that quite difficult to use technology because I don't practise, I don't use my voice again. I don't tend to use technology to assist me.

Chris: I really like the analogy with the sticks for walking. It's a good example. Do you have any other sort of recommendations or advice from your experience that you would give to other stroke survivors?

Claire: Yes I have. I think probably first of all is, in order to be able to speak again, really is to work out what motivates you. Why you want to speak again.

The second thing probably is to believe that you can speak again. That it is that you are able to speak, because I think everybody can.

Probably the next thing is, obviously coming from as a Sports Psych or being trained in Sports Psych, I used a lot of visualisation of me speaking, hearing those words in my head. So visualise yourself speaking and hear yourself speaking the words that you want to use. Then so much is practise, practise, practise. Just get out there and just speak to people.

I actually used to read aloud to myself, out loud obviously, in an evening for probably an hour-and-a-half just to practice. When I first started, I couldn't get past one or two words. But the more that you practice then the better it gets.

Also probably move out of your comfort zone if you can. Just taking baby steps each time. Then I think probably the other thing, I was in some ways blessed in that I could start from scratch using words that are a lot more empowering. For example, if you look, at let's say, wish, want, need or must. “I wish I could do something” rather than saying “I need to do something”, because that's much more powerful.

Chris: I think what you said about empowering words, I think that's useful to everybody whether they have aphasia or not.

Claire: Yes definitely. But I think the difference is, people who have aphasia, they will certainly... From my point of view, words become important to you when you can't speak them. You have the opportunity then to use words that are a lot more empowering. What I found is that using words like that actually opens up your world a lot.

Chris: Again, that's fantastic advice. Thank you again very much for speaking to us, Claire. I hope that you enjoy the rest of your time over there in the United Kingdom.

Claire: Thank you very much indeed. It's been nice talking.

Chris: Bye-bye.

Claire: Bye.

Announcer: When you or someone you love has a stroke, you are instantly bombarded with a whole lot of medical terms and it's pretty hard to take them all in. It's like learning a whole new language. To help you, we've created Strokesaurus: a glossary of stroke terms.

It's an A-Z guide of the language used around stroke, from atrial fibrillation to Webster Pack. It explains key terms in simple language. You can access it on your computer, smartphone or tablet at enableme.org.au.

Chris: Dr Miranda Rose is one of Australia's leading speech pathology researchers. She is director of the Aphasia Lab at La Trobe University, where she studies the most effective ways to treat and manage aphasia. Thank you for joining us, Miranda.

Miranda: Thanks Chris.

Chris: Why do some people have communication problems after stroke and others do not?

Miranda: Before I answer that directly, if it's okay, I'd like to just explain a little bit about what I mean by communication.

Chris: Okay.

Miranda: Because I think that's going to help listeners understand my answer.

When I'm talking about communication, I'm talking about a really broad range of activity. That includes things like being able to listen and understand other people's speech. It includes being able to talk, being able to read, being able to write. But also a really broad range of nonverbal communication, such as gesture and facial expression, tone of voice, our body postures and so on.

So when we think about communication, we need to think of that broad range of activity.

It also really helps to think about it in terms of why we're doing it. Really there's sort of two main parts of communication: to carry out transactions, so to do things like getting our physical needs met, banking, shopping, using transport, ordering in a café, these kind of physical transactions, but also interactions. Getting our social needs met, like sharing stories or telling each other what happened during the day, seeking support and validation for our actions or our ideas, and even things like revealing our personality and identity through the way in which we communicate.

When we think about communication, we're thinking very broadly and because of that these behaviours are underpinned by a really complex network of brain regions and not just located in one area of the brain.

When we think about why some people after stroke have communication problems and others don't, it's really to do with this complex network of brain areas that are linked up and that are responsible for all of those activities I just was talking about.

For example, a stroke might happen, there might be a blockage in a blood vessel or a bleed from a blood vessel into a particular area of the brain. That particular region might not have anything to do with any of those communication functions I just mentioned, or it might be really important for a whole range.

It's really dependent on which areas of the brain are impacted by the stroke and then how much of these networks are impacted as to whether someone has a communication problem or not.

Chris: So it can affect any of those aspects of communication that you're talking about, is that correct?

Miranda: That's absolutely right. Someone could have difficulties understanding the speech of others, but be able to talk and be able to read and be able to write. Conversely, someone might have really good understanding, good comprehension of what's being said to them, but have a little difficulty in finding words and a really major difficulty perhaps in reading and writing. Maybe some of the problems are very focused on processing nonverbal communication signals.

There's this really huge variety of ability and disability that we see after stroke, very dependent on the nature of the damage that's happened in the brain after the stroke. That can be mild through to extremely severe.

Chris: How about something like understanding numbers and/or individual letters, those sort of things?

Miranda: Again, it's a very common problem that people after stroke experience. There are networks in the brain that are required to be able to understand numbers and to carry out calculations, and similarly to be able to look at letters on a page and decode those letters into some sort of meaningful expression.

Unfortunately, these are common problems and they may be present in someone and not in another person, depending on where in the brain the damage has occurred.

Chris: We've had a lot of our listeners and our website users ask us questions. One question has been about Foreign Accent Syndrome. Is that a related thing to these other communication problems?

Miranda: Perhaps what I might also do before I get onto the Foreign Accent Syndrome question is just label some of these difficulties I was talking about, because Foreign Accent Syndrome relates very particularly to one.

When we're talking about language problems, we're primarily talking about a condition called aphasia. If you have difficulty with language, that is, the symbols that we associate with the meanings of words and the way in which we put words together in sentences and so on, the grammar behind our communication, we are talking about aphasia. You might have difficulty understanding what's being said to you or being able to say something to someone else, because you can't access language in the way that you used to.

I think the easiest way for people who are not familiar with aphasia to really get a sense of that, is to picture themselves in a foreign country where they don't speak the language. I don't know, Chris, for you if that's Japan or Russia or wherever it is that you don't speak the language.

Chris: Pretty much anywhere I think.

Miranda: Okay. Let's put you in Russia today. If you're in Russia, you're still Chris, you're still thinking, you still have needs and wants, but when you go to express those ideas to someone in a shop, you don't have the language symbols of Russian and you can't turn your thoughts into language and words.

Your muscles of your throat and mouth and so on are fine. You can make sounds. Not that you can't speak, but you don't have access to language. That's what is happening in the condition called aphasia. It's a language problem.

The other two that are really common in people after stroke: dysarthria and dyspraxia. Dysarthria is a motor speech problem. This is where the musculature that we use to be able to speak is weakened or is not able to be coordinated well because of the brain damage. Someone may not be able to say any sounds at all, speak at all, because they can't get those muscles to work or they might have a mild problem and they sound a bit slurred. It might take them a long time to be able to get their words out.

The final one is, as I mentioned, dyspraxia. This is a really difficult one to explain, but basically in dyspraxia the muscles are fine, the tone of the muscles good. But when you are trying to make the plan for making the coordinated actions that are so complex in something like speech, when you're making those plans there's a problem. The brain can no longer make the motor plan.

I'm telling you all of that because you asked about Foreign Accent Syndrome. And our current understanding of Foreign Accent Syndrome is that it's very related to the dyspraxia. The condition I just spoke about last there, where we're trying to make the coordinated detailed movement plans of the hundreds of muscles that are involved in speaking.

In Foreign Accent Syndrome, it's thought that these plans get slightly distorted to the point where it sounds like the person's speaking with an accent. Yes, it is related. It's quite a rare condition and it's best understood as relating to difficulties in getting the speech musculature to behave in the way that we want it to, in a smooth and coordinated way.

Chris: Given that it involves all these muscles that drive speech as well as the parts of the brain, I'm wondering how this compares to other sorts of stroke recovery. Because we're often told that you get your most recovery in the first few months after a stroke. Does this apply to communication in general as well, or does it take many years to recover?

Miranda: I'm so glad you've asked me this question, because if there's one thing I would love listeners to be able to remember from this podcast is this fact. This fact is that communication can keep improving as long as we're alive. That's true of someone who hasn't had a stroke as well as someone who has had a stroke.

The brain is an incredibly plastic organ, with incredible capacity to be changing and changing very specifically in relation to activity that we're doing.

The notion of experience-dependent plasticity, what we do and what we practice and what we focus on impacts the connections in the brain and makes us more able to do certain activities.

With someone after stroke, there's definitely an initial process of healing that's going on as the brain's settling down and reacting to cleaning up the damage, if you like, of the stroke. People call this period of spontaneous recovery. It is true that there's a lot of that activity happening in the first six months after stroke, but it is not true that recovery stops then.

In fact, experience-dependent plasticity and recovery has been demonstrated well, well beyond that. We have plenty of literature in the speech pathology stroke literature that documents people of 15 and even 20 years after their stroke still making significant changes in their communication.

It's a very important piece of information for people to hear, that there is hope and that this idea of everything happening, every bit of recovery that's going to happen, happening in the first six months is absolutely incorrect.

Chris: On the other hand, we've also had some people tell us that they feel they get worse after a number of years. Can that happen as well?

Miranda: Yeah. It's not as common a story in my experience and in the literature, this idea of people getting worse over time. In the literature that I have seen, it so often seems to be related to general physical wellbeing. So other factors such as general physical wellbeing or changes in mood or changes in stress level, that impact the person's capacities and sense of ability.

The other thing that is very important in the communication space, Chris, is that if we're not communicating, if we're not rehearsing these communication skills, they will get worse. Over time, if you don't engage in communication, it won't be getting better. This is this experience-dependent plasticity idea that we were mentioning earlier.

If people are getting worse, the first thing that they'd be wanting to do is to check their general physical wellbeing, be thinking about changes to mood or stress level, but also are they actually engaging in these activities.

Chris: Interesting. I want to ask more about the mood and stress there. Because things like fatigue and anxiety seem to affect people's ability to communicate as well. Are these known factors?

Miranda: Yes, they absolutely are known factors. Fatigue will make any function more difficult. Because communication's such a complex task, if we think about expressing an idea to someone, we've first of all have had to have generated this idea; we've got to turn that thought into language and nonverbal signals; we've got to translate that language into speech and gestures; and then we've got to actually physically produce the words, sentences, gestures and tones.

When fatigue levels are really high, these systems, these complex systems, might just not get the required energy and focus that they require and then fail. I'm sure people who haven't had a stroke are very aware that when they're tired or when they're mentally fatigued, they'll often be quite a lot worse at thinking of people's names for example. That's a very simple example of how we need cognitive resource in order to be able to communicate well. But fatigue's absolutely an important factor.

The other one you asked about Chris is anxiety. Unfortunately, we know that people after stroke have high levels of mood changes. Depression and anxiety are two mental health issues that are unfortunately very common in people after stroke. We think maybe even more common in people with aphasia after stroke.

Anxiety will absolutely get in the way of clear communication. We unfortunately really need to be doing a lot more work in this space. The research is quite sparse to help us understand this problem as well as to be identifying interventions that are suitable for people with stroke and communication problems.

Chris: Speaking of research, could you tell us a bit about some of your own work that you're doing at the moment?

Miranda: Yeah, I'd love to. How long have we got?

Chris: As long as it takes.

Miranda: I've been researching in post-stroke communication disorders actively now for close to 20 years. At the moment, the main focus for our team is on two main things. One is trying to find an effective treatment to reduce the severity of aphasia after stroke, so the language based communication problem. But also for those people who are living long term with aphasia, we're researching ways in which we can enable people to have a better quality of life.

If it's okay I'll spend most of the time I think we've actually got talking about the first goal, which is finding effective treatments to reduce the severity of aphasia.

The big trial we have running at the moment is called COMPARE. Is it okay Chris if I tell you a little about that?

Chris: Yes. I'm very interested to hear about that one.

Miranda: I'm the director of this trial. It's a National Health and Medical Research Council funded randomised control trial. This is a large-scale study that's going to recruit 216 people who had aphasia after stroke. These people need to be between six months after stroke through to 15 years, so it's a wide length of time after stroke. It's a national trial, so we're operating right across the country.

The aim of the trial is to try to find out a couple of treatments, which I'll talk about in just a moment, are going to work for a broad range of people with aphasia.

We want to know if one treatment's better than another for certain subgroups of people with aphasia and what the characteristics of those people are that do well with the treatments, as opposed to doing poorly with them.

Finally, we're really interested in the cost-benefit of these treatments. Looking at, if they were to roll out across Australia, what the costs would be and what the benefits to our society would be in rolling them out.

The two treatments that we're investigating in this trial are called Constraint Induced Aphasia Therapy, or CIAT, and the other one is Multi-Modality Aphasia Therapy, or MMAT. I'm just going to say CIAT and MMAT from now on because it's such a mouthful.

Both CIAT and MMAT involve intensive talking practice. The practice happens in small groups of three people with aphasia and a therapist together. The talking targets, the activity that people are doing in these groups, involves everyday words and phrases and sentences. These are generated by the participants looking at pictures of objects and actions that generate these words and phrases and sentences.

The interaction that's going on in the small group is a game-based social activity and it's very highly motivating, quite a lot of fun and laughter's going on in this therapy. The talking targets are adjusted for each person's level of ability, and then the therapist helps the person with aphasia to produce these targets if they need help. The treatments are run for three hours per day, five hours per week for two weeks. It's a 30-hour dose of treatment.

The interesting thing about the two treatments, CIAT and MMAT, is how they differ. They differ in the way that the therapist helps the person with aphasia make the words.

In CIAT, the therapist will say the word and show the written word to the person, so the person can say it aloud if they haven't been able to.

In MMAT, the therapist gets the person to make a gesture associated with the word they're trying to say, to draw this word and to read and write the name of the word, and then say the word aloud copying the therapist's model. The treatments are quite different in the way in which the person with aphasia is being helped.

Chris: The constraint induced aphasia therapy, that's the CIAT one. That's the one that people may have read about in things like Norman Doidge's book about the brain rewiring itself.

Miranda: Exactly, yeah.

Chris: I guess what you're doing is trying to find out whether that is really the best way to treat aphasia, or if using gestures is a good way to go as well.

Miranda: In the Norman Doidge book, the reader is introduced to the idea of learned non-use. The idea in learned non-use is that if we have a function...

Let's take it away from communication for a moment because sometimes it's a bit easier to understand these ideas when we're thinking about the motor system. With learned non-use, if we take a function like reaching and grasping with the hand, the idea is that it will get worse. Reaching and grasping will get worse if we don't keep doing that action.

In the case of a person after stroke, for example, they might have difficulty now with their right arm not working after the stroke, so they might favour using their unimpaired left arm for all their reaching and grasping tasks. Then the impaired right arm becomes even more impaired through not using it. This is called this notion of learned non-use.

Some researchers have applied this idea of learned non-use to talking and communicating, and they suggest that the best aphasia therapy will focus solely on talking and therefore should not include cues and supports that involve communications functions other than talking. For example, gesture, reading, writing and drawing, because that's a kind of way that we might establish learned non-use.

But it's really not so clear in the field of communication, because as I said before, of the complex nature of how the brain networks are for communication. In fact, there's good evidence that the therapies that use a range of cues, including gesture and reading and writing, have been able to reduce severity of aphasia, and there's absolutely no direct evidence that they're harmful. In fact, there might be the possibility that some people with certain kinds of aphasia, for example people with very severe aphasia, actually require these multi-modal cues to benefit from the talking practice.

The COMPARE trial is exciting I think because it's going in to directly address this question. What happens when we just focus on talking in CIAT therapy and what happens when we involve the broader range of communication activity, such as gesture and reading, writing and drawing in the MMAT. It puts these two treatments up head-to-head in a very controlled trial. I'm really looking forward to seeing the results in two years’ time, Chris.

Chris: It does sound very exciting. How can people take part if they want to be a part of this research?

Miranda: Our telephone number is in Melbourne, so 03 9479 2776. But you could also email us on COMPARE, the word compareaphasia, that’s one word, compareaphasia@latrobe.edu.au. Or you could go onto our website at La Trobe University and if you put in COMPARE you will come to our web page. You can just put it into a Google search engine and it'll come up as well.

We're operating all over Australia. Currently we've got groups beginning in Melbourne, Sydney and the Gold Coast and Brisbane. But we'll soon be operating in Newcastle, Adelaide and Perth, in Hobart, and we'll hope to begin in regional centres next year. Plenty of opportunity for people all around Australia to get involved.

Chris: Thank you very much for speaking to us. This has been very educational.

Miranda: It's been a pleasure!

Chris: That was Dr Miranda Rose from La Trobe University.

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Chris: Finally today, we have Alana Stewart. Alana is a speech pathologist who you may have heard on the Stroke Foundation’s StrokeLine. She currently runs the Stroke Connect Follow-up service in Victoria. Thank you for coming in, Alana.

Alana: My pleasure, Chris.

Chris: You're a speech pathologist; what do speech pathologists actually do?

Alana: That's a very good question. Miranda has covered this, but just to give you a quick summary, we diagnose and treat communication disorders and that includes difficulties with speaking, listening, understanding, reading, writing, social skills, voice and stuttering. We work with both adults and children in a variety of settings, like schools, hospitals, private clinics or in people’s homes.

Chris: That is a very wide range. I understand you also work with swallowing problems as well.

Alana: Yes we do. We work with people who have difficulty swallowing food and drink safely, and we provide exercises, strategies, or in some cases we modify the consistency of a person's food or drink.

Chris: Is that because it's all related to the same muscles in the same part of the body...

Alana: Yes, you're right. Yeah. Even though the profession name doesn't in any way allude to swallowing, that is our area.

Chris: That's very important too. In terms of communicating, a lot of people talk about how frustrating it is when they can't communicate. This affects their communicating with their carers or loved ones, also with people they have to interact with in the community and sometimes even the health professionals that they deal with. How should people deal with it when they have a communication breakdown?

Alana: Most of us have experienced some form of communication breakdown, where either you can't make yourself understood or you can't understand what the other person is saying. It's extremely frustrating for both the person with the communication difficulty and their communication partner.

I've got a few ideas or suggestions. The first one would be carrying a card on you that explains what aphasia is and how it affects you. That way you can hand it over to your communication partner and educate them.

The other suggestion is letting them know that you need more time to get your message across, so that they can take the pressure off you and you'll feel more relaxed to express what you're wanting to.

The other suggestion is telling them how they can help you get your message across. That may be them speaking in shorter sentences, speaking more slowly or focusing on key words.

A couple of other suggestions are, if you have a communication book or a device, do make sure that you take that with you when you're out, say visiting your GP or going to the supermarket.

The other idea is to have a carer or friend accompany you, so that they can be your advocate and help you when that communication breakdown occurs.

Chris: Now, you mentioned using a device there. Are there any particular devices or apps that help people with aphasia?

Alana: There's a number of different types of communication disorders and they vary in severity, as Miranda spoke about earlier, and this obviously affects what device is suitable for which person. We strongly encourage that the speech pathologist actually does an assessment to match you up with the most suitable device or application.

If you head onto our EnableMe website, in our What Helps section you'll find some apps and suggestions there. Otherwise, give us a call on StrokeLine, where you can speak with a speech pathologist directly and they can support you in finding the best thing.

Chris: I guess the other side though of using technology, like an app or a computer even, is that sometimes the aphasia can make it more difficult, like using a keyboard or remembering a password, that sort of thing. What can people do about those issues if they're relying on the technology to stay connected?

Alana: There are a lot of barriers to using technology, as you say. The best person to work through those barriers with you is an occupational therapist and/or a speech pathologist. Accessing those services can be done via your GP. If you feel like you're needing some help in accessing the services, do call us on StrokeLine again and we can point you in the right direction.

But there are things, like different types of keyboards or computer screens, that can be purchased, different types of mobile phones that are more accessible to somebody with a communication difficulty. So don't let it stop you from accessing that technology.

Chris: I'm glad you mentioned this issue of getting help, getting someone to help you with this, because this is another thing that we often hear. As Miranda has said, it can take years, you can get better after many years. But people often find that they get a lot of help initially and then that sort of tapers off too.

So where can people continue to get help? How can they find someone to help them, if say it's years after their stroke and they don't know who to talk to?

Alana: We do hear this very often from stroke survivors. What do I do when that initial therapy finishes? How do I keep practicing my communication?

I think it's really important to remember that the best way to practise talking is actually talking. So finding yourself a communication partner, it may be a friend, it may be somebody that you talk to over Skype that lives on the other side of the world, and creating some kind of routine where that communication is part of your everyday life is really important and getting those hours of practice in.

There's obviously the EnableMe site that we mentioned previously that has research opportunities, studies that people can participate in. You can speak to your GP about accessing some subsidised Medicare sessions through the Chronic Disease Management Plan. Again, call StrokeLine if you need some help with that one.

Alternatively, they may be able to refer you back to the public health system to a community rehab program. Even years down the track, you may still be eligible for services.

My last suggestion is a lot of the universities run student-led clinics, where speech pathologists in training can deliver therapy to people in the community under supervision.

Chris: People can contact a university for those sort of services and also I suppose to get research projects that they can take part in?

Alana: Yes, absolutely.

Chris: We heard about Miranda's trial earlier, but there are other ones around Australia that people can join up into?

Alana: Mm-hmm (affirmative). I guess I'm just encouraging people to use their imagination. Think about how you can inject some more communication opportunities into your day, writing in a journal, texting a friend, talking on the telephone, saying hi to the checkout chick at the supermarket.

Chris: I guess there is also an aphasia community that people can be part of and get help from other people who have the same experiences.

Alana: Aphasia groups provide a wonderful opportunity for those with a communication difficulty to get together, to communicate with one another, to build confidence in a non-judgmental environment. Often these are run by a speech pathologist.

I'd strongly encourage you to head onto our website, for those listeners out there, and have a look at the list of aphasia groups and find the one closest to them. I've run communication groups for a number of years and it's extremely rewarding to see the relationships that are made in those groups and the communication improvements that people experience.

Chris: Thank you very much, Alana.

Alana: My pleasure.

Chris: That sounds like very good advice. Yes, definitely go to enableme.org.au where you can find some aphasia services and resources and other research services, those sort of things. There also is an easy-English setting on EnableMe for people who have trouble with aphasia.

And of course you can speak to a health professional on StrokeLine. As Alana mentioned, you can talk about aphasia or any other issue. You can call StrokeLine on 1-800-787-653 or 1-800-STROKE.

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You might have muscle spasms or uncontrollable jerky movements in your arms or legs, changes in your posture, or unusual limb positions, and it can cause pain. It can be treated though. Physiotherapy or occupational therapy can help you adapt and improve your movement.

There are other possibilities too, such as injections with botulinum toxin type A, electrical stimulation of the muscles, electromyograph or EMG biofeedback and muscle relaxing medication.

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Chris: That's all we have time for today. Now if you like what you've heard, you can help us out by giving us a good review or a good rating on iTunes. So if you're listening through iTunes, please give us a good rating.

Thank you once again to our guests today. We've had Claire Hanney, Dr Miranda Rose and Alana Stewart.

Announcer: That's all for today's EnableMe podcast. You can find out more on this topic and continue the conversation or listen to other podcasts in this series at our website enableme.org.au.

It's free to sign up and you can talk with thousands of other stroke survivors, carers and supporters. We also have health professionals from StrokeLine who can answer your questions and give evidence-based advice.

The advice given here is general in nature and you should discuss your own personal needs and circumstances with your health professional. If you would like to suggest a topic or provide feedback, contact us via the website enableme.org.au.

The music in this podcast is “Signs” by stroke survivor Antonio Iannella and his band The Lion Tamers. It was recorded at Antonio's studio which you can find out more about at www.studiofour99.org.au.

This EnableMe podcast series is produced by the national Stroke Foundation in Australia with the support of Allergan.