Season 2 Episode 4, 2 February 2024 (Duration: 0:51:00)

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 speech pathologist Jessica Mutzelberg. A speech pathologist can help with communication, swallowing and voice changes after a stroke. Jessica talks about why speech therapy is not just about speech, and shares some apps that can help at home.

Paul and Jessica then go on to talk about returning to work or study after a stroke, and the impact it can have when you can’t return to the work you were doing before.


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.

Today I’m chatting with Jessica Mutzelberg from Intrinsic Health Group. Jess is a speech pathologist with over 25 years of experience helping adults with a variety of speech, language, voice and swallowing skills. We dive into the world of speech therapy and its impact beyond just improving speech. We chat about the challenges survivors face reintegrating into work or school, and we discuss how everyone can play a role in supporting their communication needs.

So please enjoy this chat I had with Jess.

Thank you for making the time to come and have a chat today about all things our speech therapy. I really do appreciate it.

Jessica: Yeah, no worries. It's good. I think it's great to have a chat and hopefully it's a help.

Paul: I absolutely think it will. So I guess my first question is, a lot of people have, well I've heard of speech therapy, but I think there's probably a bit of a perception out in the world potentially.

And it certainly was for me that speech therapy is about speech. But speech therapy is a lot bigger than that, isn't it?

Jessica: Yeah, absolutely. The name is very deceiving. And yes, normally my first little bit is “Hi, I'm Jessica. I'm a speechie, that doesn’t mean you have a problem with your speech.”

So it's not the best name to describe what we do. There's a whole gamut of things that we do.

Certainly, communication is probably a better description of the bulk of what we do, particularly for stroke survivors, but also swallowing. We have a lot of work in dysphagia and the whole swallowing world and voice as well. So yeah, there's a few different things that we do.

So speech pathologist is not the best name and normally needs a little bit more description. Yeah.

Paul: Okay. I guess what are the common things that you see with stroke survivors and are there any sort of less apparent that might sort of take people a little bit by surprise?

Jessica: Yeah, for sure. There's a bunch of things that we see and every stroke survivor has a different presentation.

So even if they, you know, we might be able to label it a certain thing or this is what you've had on, on the scans, this is where you've had your injury so this is likely what you will have. But every patient will have a different presentation. So it's a very individual thing, but certainly difficulties with understanding language, processing language and then the ability to put maybe thoughts together into a sentence to communicate what people are feeling. All those things around that kind of understanding and expressing yourself in language is what we would call aphasia.

That's the big one that we see – different forms of aphasia. But there's other things too. It can affect the motor programing of our actual muscles, so we might know exactly what we want to say, but we can't put our lips and tongue in the places that we want to put it to get those words out. That's called dyspraxia.

It can have a couple of different forms as well, and it can coincide with aphasia so they can go together. And then dysarthria. So that's again, more like a muscle weakness.

Often, you know, with stroke you'll see the very physical side of things. You might have a left-side palsy or right-side paralysis or something. Well, that can happen with your facial muscles as well.

And so you can have a real slurring of speech because the muscles aren't as strong or they're not working. There might be one side that's really very weak. The other side is strong. So of course you can't pronounce things the way you may be used to. So that's called dysarthria. So that can happen also.

Paul: Dysarthria.

Jessica: Yeah. So that's a bit of a slurring aspect.

And then of course there's dysphagia with a “g”. Dysphagia. That's the swallowing.

Paul: So, dysphagia, there’s dysphagia, aphasia. Yeah, okay. Different.

Jessica: Aphasia is normally what we call it, that's the communication. Dysphagia is the swallowing.

Paul: Okay.

Jessica: And that we will often see in the very acute stages of stroke, oftentimes that will resolve, but sometimes not. And it's an ongoing issue.

Paul: Yeah, I must admit sometimes even now I have problems. And I'm sure other stroke survivors like just – and not that it was a big part of my world post – like in the acute phase, definitely.

But swallowing, sometimes I'll swallow a boulder. Yeah, I think I've heard a lot of… Yeah, I've spoken to a lot of people that have that experience.

So its, yeah and it comes out of nowhere. It's a really peculiar thing.

Jessica: Yeah. And can be quite scary for people.

Paul: Yeah, absolutely. I'm assuming there's a few different varieties of aphasia.

Jessica: Yeah.

Paul: Is it possible that sometimes stroke survivors can think they’re saying one thing, but actually say something completely different?

Jessica: Yeah. Yeah, absolutely. We kind of boil it down to two main groups, I suppose, of aphasia.

And one is a fluent aphasia and one is a non-fluent aphasia. So fluent aphasia, is one where you probably are speaking maybe at the rate that I am. So there's a lot of words coming out, but they're not necessarily the right words. They may be quite empty.

It might be, you know, the listener initially might go, “he's Jack. He looks really good. He's talking, we're having a conversation.”

But it doesn't take long for them to go, “’I don't know what this conversation is actually about.” There's a lot of empty words. There's not a lot of context. There's not a lot of logical flow to the conversation. But they look okay and they sound like they should be okay.

But there's something not quite right. So that’s fluent aphasia.

Non fluent aphasia, where you can really see the person is having a lot more trouble formulating a sentence or getting the words out.

Paul: Finding words?

Jessica: Yes, finding the right words. And they're very frustrated by it and they know there's something wrong.

Whereas often the fluent aphasia they don't really realise there's something wrong. They can, but sometimes they don't. And the non-fluent ones are a lot more… there's lots of pauses, there's more frustration, there's more word finding difficulty, yeah in that one.

Paul: Okay.

Jessica: So those are the two broad categories. But again, in those there's a whole lot of different presentations as well.

Paul: I'm just curious now, what are some of the sort of different presentations?

Because I think it's a bit of a misunderstood thing. And I think for a lot of stroke survivors out there, once they get past the acute phase. Particularly if you have invisible injuries. Your family and, you know, some associates might sort of say, “he's looking pretty good”, or “she's looking fairly fine now.”

Yeah, but they still have these what I call invisible issues.

Jessica: Yeah, absolutely. Well, I've got a gentleman at the moment, he looks great. He's had a brain injury, he had aphasia, but he looks great. Mobility wise, he's great. He talks very fluently.

But he, he really has trouble processing, processing what he's saying and processing what other people are saying. So he will continue to talk and talk and talk and talk.

And there is reasonable content to what he's saying, but he will just move from one topic to the next to the next to the next, with sometimes little clarity in between.

So you’re all of a sudden going, we were talking about trucks, now we're talking about cars, now we're talking about family. But it takes you a little while to kind of understand that while he looks okay and he sounds like he's okay, there's something not quite right here.

And he will find it very fatiguing to be in a conversation where a lot of people are talking or there’s background noise, because the processing of conversation is just so difficult for him. And then really he's also not processing his own conversation because he's not really understanding that what he's saying is not completely understandable to his listener. So, you know, that can happen.

So he's pretty good, but he still has those deficits. And of course, his wife and his family are like, “He's good, but he's not the same. He looks the same, but he's not quite the same and he just keeps talking and then he disappears because he’s fatigued.”

So it can be quite difficult for family members to go, “but I thought he was better. He looked like he was better, but he's not.”

Whereas the other patients I've got, again initially might have quite good what we call automatic utterances, volitional or non-volitional, kind of utterances. So that can say, “hi, how are you?”

“Yeah, good day.”

But then you push them for something that's a little bit more..

They've got to really intentionally work for that word or work for that sentence or have a conversation about something more specific.

Say we were doing current affairs. We're talking about the Middle East. They know about it, they can understand it. But when you push them for a comment on it, they can't put the words together. You know that place.

They might say “that place in the Middle East. That place, there's war there. But I, you know..”

Paul: It's that tip of your tongue sensation.

Jessica: Yeah exactly, which we can all have. And that's a great point, Paul, because that might be for some people, you know, those things I’ve named might be a little bit more extreme, but for some people it might just be that tip of the tongue or the slip of the tongue.

So I'm saying the word, but not quite. I’ve changed some of the sounds. I’ve changed some of the syllables around. But that might be the extent of it, but it happens reasonably often. Or I've just had what we call semantic paraphasia. So I went to say “dog”, I said “cat.”

It's still an animal, but it's the wrong word. And it does confuse the listener. It happens occasionally, but not a lot. But it is still an issue that can frustrate me at times.

Paul: Yeah, I can definitely relate to that. So I guess what are some of the more important things that people should know about stroke and communication, particularly if you've not exposed to the stroke community per se?

Jessica: I think you can't, you know, we should say this about everyone, really. You can't judge a book by its cover, on all sorts of levels.

You know you might, we see a lot of people with very obvious disabilities and I think we can make assumptions about those people that are wrong at times. And the same with someone with a stroke.

They might look fine an on the outside, but they still have issues going on that might make us go, “okay, that's not quite what we thought”.

Just by looking at that person, that's not quite what we thought we would be hearing or listening to.

I think the big thing, though, is to give space and time. To not just write people off, that “oh I can't talk to that person anymore. That scares me. I don't want to say the wrong thing. I don't want to offend. So I'll just back off. Which is exactly not what I think stroke survivors are looking for. They just want kind of some time, some understanding, and some space in the conversation as opposed to “I'll just pull out because it freaks me out that I'm going to offend this person”.

Paul: What are, you know, some of the best ways for caregivers to support stroke survivors with their communication needs? Because I know of people out there who have had other speech issues and, you know, sometimes finishing their sentences is really unhelpful.

Jessica: Right, right. Great point. Okay. This can be really overlooked sometimes by speechies themselves that I think training of communication partners is really important or education at the very least.

I think the role of most Allied Health can get quite blurry, and it probably should get blurry because I think there's a role in the counselling area.

Obviously not, we don't want, we’re not psychologists, we're not counsellors, but we do have to have an empathetic ear for people.

And we need and I think we are generally a place where people and caregivers can come and just vent their frustrations sometimes. This is what's happening. And can you help me? We just need to be a listening ear sometimes because, you know, doctors or physios even, they're very concrete. They have very obvious things to do with these clients, very obvious deficits to remedy, whereas speechies is a little bit more abstract.

And I think there’s a place there where people can come and go, “I don't know what's wrong, I don't know what this is. I don't know if you can help me. I just need to tell you that this is happening and I'm frustrated.”

Or it's “he's not the same as he was. Our relationship is different. What do I do about that?”

Or “what can I expect?” So education of the caregiver, but also sometimes that extended family, is hugely important. Also, just helping them to understand this is part of his stroke. He's not doing this intentionally. This is part of the stroke. You'd need to give it time.

You also might need to readjust some expectations that you have, and I will often then refer to a counsellor, because there could be some long-term issues that they are going to need to grapple with in that regard.

Paul: Yean and I think a lot of people have a perception of once you have an injury like a stroke, it's a bit like, you know, if you break, you know, sprained ankle, most people know what the recovery trajectory of a sprained ankle is going to look like.

And one of the big shocks for my family and particularly my wife was when we realised that a lot of it, because stroke is so different for so many people, two people can have exactly the same injury and come out completely different. How do you set that expectation with families, of the uncertainty around recovery trajectory?

Jessica: Yeah, it's so tricky and I really have so much empathy for families because, you know, I get so many couples who, you know, maybe they just hit retirement and someone's had a stroke and it just changes their whole future.

You know, it's what they thought was going to happen is not going to happen. So I am one that is always up for giving hope wherever possible, because I do think there is, and studies have shown there is good evidence for improvement over a long period of time. It might be slow, but stroke patients can improve years post stroke if they're engaging in intentional, meaningful therapy.

So yeah, I'm always one for giving hope, but I just think there needs to be space and very rarely that happens because, you know, they're either paying for a 45-minute therapy session. They want bang for their buck, which I totally get. But some, I have had times where I've just gone, “you know what? Let's just put this aside and have a chat.”

Let's just have a chat about how things are at home. Let's help everybody understand where everyone's at. Sometimes I will only see the client. The client will be dropped off. So it just means I've got to make the extra effort to call the spouse or the partner or whoever and just have a chat over the phone trying to explain some of the things that are going on, trying to help them deal with the changes and you really do have to see the caregiver, I think, as part of your rehabilitation of the patient because they’re such an important part of the plan.

And there's so much weight and change on them. They are often the advocate. They're often the appointment setter. Their life has changed just as much as the person with the stroke. So I just think as health professionals, we really have to view them as part of the team and part of the therapy process so that everyone's going to get through this in one piece.

Paul: Yeah, and I guess it's becoming more and more visible out there, and rightly so, of the impact on caregivers. You know, caregiver burnout is a big deal. It's a real thing. And I think, you know, a lot of the attention gets put on us as survivors, but it's real. There's a real ripple effect that goes on like, you know, to use an analogy that you throw a stone in a pond, you know, it affects everything.

So what can a new patient expect when they first start speaking to a speechie?

Jessica: Well, I think there's different phases, as you would know, in a stroke patient’s recovery and the acute phase is a big one as probably where they will first meet a speechie, at least a one off, you would hope in that fact.

Now I have of worked in a hospital setting and I have found that that acute phase patients they just want to be able to walk and eat. Everyone's different but they are predominantly, what they're worried about. They want to get home, they want to walk and they eat. And it's totally understandable.

But our role really at that place is to at least do an assessment, see where they're at baseline, what you know, what is changed, where are the issues, where is the lesion, what is happening here, and get a baseline.

If we can help the swallowing at that point, we will. And of course if we can do some communication activities we will. But sometimes patients’ focus is not really on that. It's on the really obvious issues. That's probably the first point of contact.

There is of course, a role for that acute communication therapy, if possible. Then they move into that rehab phase and that's often long term. They might be a long-term hospital stay. For some people it's not.

And this is one of my quandaries. When I look at different patients coming through, they have such different experiences because of where they live and because of services in their area and because of the type of stroke they have. If it's a really mild stroke, TIA, where there might not be obvious effects or often discharge time with not much follow up.

If you've had something that is a little bit more obvious, hopefully you're going to get that acute phase in hospital that rehab phase in hospital, but not always.

And that breaks my heart because people tend to just get discharged and have no idea what to do next.

Paul: Yeah

Jessica: So ideally there would be that rehab phase where they're getting all the different Allied Health therapies, speechies would come in at that point and just do some ongoing expressive language, dysarthria training, whatever it might be in that phase.

But in that rehab phase. So studies have actually shown in the acute phase, the first couple of months of recovery, some speech therapy in there is excellent. But if it's too intense, it actually has no benefit. There's so much recovery happening just physically. There’s fatigue, there’s emotional, you know, distraught oftentimes, focused on the physical. So some therapy in there is good.

But it's really at that point of three months on mark that some intense speech therapy there, can be a really great benefit. So that three months on is where I would really encourage people, even if they feel like they don't have any deficits, to maybe go have a bit of a checkup with a speechie, see if there's something that I can help with, because that's where we can do some really good assessment, set some tasks.

And there's also a whole lot of online work or apps that we can give that would really help, you know, even if they're not seeing us for an ongoing kind of situation, maybe their finances don't allow for that or whatever it might be. We can often give here's some good websites to get, here's a good app to purchase so that you can do some stuff at home and maybe come again and see me in a month or two months or three months and we can relook at how you’re going.

Paul: now I'm an old IT guy. So as soon as you say app and website to me, my propeller starts spinning.

Jessica: Nice.

Paul: Could you share any off the top of your head that might be useful? Or is it really so specific to individual situations?

Jessica: Well, it's definitely specific.

And a speechie would prescribe within those exercises and apps, different ones that they would want their patients to be involved in. But yes, there are apps and websites. There's a free one called Aphasia Therapy Online, and it's free. Anyone can use it. Anyone can get on. And there's just some naming, reading, writing exercises on there that anybody can do.

So that is one that I'll often say. Again, I'm in a private clinic, so not everybody can access that for long periods of time. So Aphasia Therapy Online, there's some subscription-based services. One's called Constant Therapy, which is great. And again, if you've got a speechie involved, they will allocate different tasks in the session, but also for homework.

You can access it online at home with the tasks the speechie has set. It’s great. There's some apps, Tactus has some apps, some language based apps, some reading writing apps, just practice apps there’s all sorts of things. There's an Australian one called Speech Sounds on Cue, which is very good for dyspraxia. There's a bunch of stuff there’s, actually I've been using a website for more cognitive impairments called Happy Neuron, and that has some really good ones.

So visual attention or memory or executive functioning and yeah, all that, all that kind of thing as well. So there's a bunch of things online that sometimes have a fee, sometimes don't, but are worth doing.

I also recommend for a lot of my patients things like Sudoku or crosswords, or apps, you know, memory apps. So that memory type game, that kind of thing as well.

Just to keep people engaged, focused, attending all those cognitive skills between therapy sessions as well. So there is a bunch of stuff out there that people can use.

Paul: And I guess the upshot is too, that it's a question that somebody can totally ask their speech therapist if you know, if those options are out there for those. So -

Jessica: Absolutely

Paul: it's important to know that you can ask that question, I guess.

Jessica: And again, the research does say some of this intensive therapy is really good in that rehab phase, it’s very hard to see a speechie, you know, for 4 or 5 hours a week. It’s very expensive. But that homework is the same thing. So if we're set tasks at home and we can put aside an hour a day to do some app work, some online work, some worksheets, some intentional communication with a communication partner, that is speech therapy and that counts to this intensive work that the studies have shown has really helped.

So you might see a speechie once a week, once a fortnight, but these online apps and programs are your best friend at home in terms of recovery. Yeah.

Paul: Keeping in mind about, you know, sometimes with cognitive issues in patients and I always, you know, come back to attention span and memory and those sorts of things. Therapy and rehab is quite a commitment and it requires attention span and all those sorts of good things in order to see it through.

But if that part has been damaged, how do you navigate that?

Jessica: Great question. I think that's the part of therapy isn’t it and taking that into account in terms of planning a therapy, it might be that you plan shorter sessions, particularly in the hospital setting. You might just plan shorter sessions, but more frequently: morning and afternoon, 20 minutes, if that's all it is, 10 minutes if that's all the person can cope with.

And then this is where an OT is fabulous. We should all be working together in setting some scheduling reminders or ways that you can help the client remember to do their homework. Remember to sit at the computer for 10 minutes. Remember that they've got a speech therapy appointment, whatever it might be. There might be alerts on phones, all sorts.

But we have this wonderful technology at our disposal. So using that the best way we can, but maybe getting an OT or someone in to give us a few tips on how we can schedule ourselves, use some new things so that we are remembering to do all the things that we need to do.

But I think in a therapy session, you know, again, the therapy sessions that I am doing at 30 to 45 minutes, I think you can be creative in that time to change the tasks frequently so that you're reengaging or using a different part of people's brain to maintain attention.

So, you know, I really think conversation is an important part of rapport building. And just I mean, this is a very functional thing, right? We all want to be able to have a conversation. We don't want to be withdrawing from people, which is what a lot of stroke survivors can do. We want to be able to engage with people.

So if a speechie is a safe place to practice that, then I am encouraging people. What are you watching on the news? What's happening in the world? Have you got interest beyond your little personal bubble so that we can be of interest to other people and be able to engage with the world around us?

So just having a conversation about what's going on in the world, to me, is a great way of… it's a therapy task, but it's very relevant to the person where they're at, and it might be just a ten minute convo and then we move on to something that's online and then we might move on to something that's paper based.

So that breaks, and the change of activity I think is really important when we do therapy tasks.

Paul: And you must get very good at being able to spot particularly those with cognitive issues and attention span issues when they're starting to check out.

Jessica: Absolutely.

Paul: What are some of the signs you see of fatigue in stroke survivors when they’re like, they’re cooked, they’re done?

Jessica: Oh I feel for people, because I can just see the frustration on their face sometimes. Sometimes it's emotional and like, I cannot do this. Sometimes, you know, the spaces of people being able to answer my questions just goes and I’m like okay, we've hit the end, the glassy eyed, I'm done. And sometimes people, you know, therapy sessions are set.

Maybe at the same time each week, people come in, they're having a bad day. I don't want to be there at all. And so I think we have to be aware of just people's demeanor. And this is why it's so good to have people over a long period of time. You get to know them, you get to know who they are and how they function.

Some people will walk in. I'm like, you're not having a great day. They’re like nah I just want to be in bed. And I'm like, Okay, then let's just chat. Tell me about your childhood. Tell me about your family, things that people know they know well. And even if someone's having difficulty putting the sentences together, that non fluent aphasia that we're talking about, oftentimes because it’s such a long-term memory, they know their family members well.

They can tell me about themselves in a reasonable amount of detail. And at least we're communicating. We're accessing memories, we’re putting sentences together. And that might be all we do that day. We just have a chat about childhood, growing up and I'll tell them a bit about me. And so it's again, that turn taking, that conversation, it's very functional.

Most things to me come back to functional. I want people to be able to function in their world and it to be useful for them outside of the clinic walls.

Paul: What are some of the other challenges that patients and families might sort of see during that rehabilitation process? Is there anything they should sort of look out for? What do you sort of see on that front?

Jessica: Yeah just being very aware that people can plateau in their therapy, in their progress. People can sometimes go backwards a little bit, you know, lose a little bit function. Or thought they were moving forward and it feels like I've taken a step back. That can certainly happen. It can be signs of just fatigue or it might indicate a little break from therapy is needed.

You know, I think sometimes, like everything, we need a bit of a holiday, a bit of just downtime, a bit of time to just rest and recover, have some naps, go away for a bit. I think it's vitally important for the brain. It can be a sign of just something else going on, just some general unwellness or things that are happening.

And I do think for some stroke survivors there can be some ongoing health issues, particularly if you've got a mobility issue and you're in a wheelchair a lot of the time, then you might be fine. I had a patient in the hospital just this week. He is in a wheelchair post stroke and swallowing was pretty good. He was doing alright.

Communication was not too bad, but he's developed a pneumonia and that kind of came in over time and a lot of that is just because he's sitting in a chair. It may be some swallowing issues as well, but he was doing okay. The family felt like he was doing okay and this kind of developed a little bit over time because of just some of his posture, inability to move.

The family, of course, now is kind of beating themselves up because they didn't see it early on. She kept saying to me, “I thought I was doing the right thing. I thought we had out of control, but have I done this? Have I caused it? Did I not see something?”

So it's very difficult for people, but I guess being aware of any little changes, not being paranoid, but being aware that things can change over time just because something is good or moving in one direction doesn't mean that it won't plateau or move back.

But it also doesn't mean that that's the end of the road, you know, just maybe needs some medical attention, maybe need a break and then we can move on. I think being kind to ourselves, no matter our situation is very, very important.

And having people around us that now as well that can speak into situations, go “so I just think something's up, something's a bit different. Can we just go to the GP and have a little bit of a look at things?”

I think that's really important, particularly for fatigue and, you know, just some of that frustration that can happen at home over time.

Paul: And this might be asking a question that's too general because everybody is so different. But you talked about plateaus.

Jessica: Yeah.

Paul: In recovery or, you know, in therapy. Do you have any strategies for breaking through plateaus?

Jessica: Yeah, well, again, sometimes a break is good and a break is good just sometimes for motivation. Everyone gets sick of the same thing over and over. So just having a break, reestablishing really goals.

What are your goals? And sometimes that might be the discussion that we have, right we've just been working on putting sentences together, you know, syntax, sentence construction, all that kind of thing, because that has been where you’ve struggled with.

But do you have a really functional goal? It might be a work-based thing, I have to give a presentation in a month's time and I'm just feeling like I'm not ready for it.

Right. Well, let's work on that. Let's write that together. Let's practice that together. Let's record that. Let's take it to another speechie in another room and you give it to her, someone unfamiliar.

So changing things up completely can have a really great effect at that plateau or lack of motivation stage. Just a real about turn to try something completely different. And I think goals are really important, particularly for young stroke survivors, because getting back to work might be a thing or they might have something happening at school with their kids where they've got to go and talk to the teacher.

They're a bit uncomfortable about that. Well, let's work on that. What are you going to say? What questions do you have? How do you phrase that? Just bringing it back to a very functional approach and then reevaluating as we go. The person themselves has to be part of the planning of their therapy. Otherwise there’s going to be no motivation to get anywhere or do anything.

And they’re just stop coming, which is not necessarily to their benefit.

Paul: You did talk a little bit there about returning to school, returning to work and some of those barriers. What are some of the other barriers that people can expect to encounter or do encounter in that journey – getting back to work or back to school?

Jessica: It can be a really tough one because again, I think people can appear and they themselves might think they're back to normal.

Everything's good, I'm ready for work, but they get back into that work environment, school environment, and there’s time pressure that they didn't have prior to that. There's colleague pressure, there’s hallway conversations. There's just more pressures then maybe they had experienced through their recovery prior to going back to work.

So while they might be able to be up to doing the work, sometimes it’s the external factors, the people, the amount of people that they're seeing, the noise, the background noise in their environment, the scheduling in their diary can be very overwhelming, can have more of an impact than people realise.

So a staged approach to going back into anything I think is really important. And there are some excellent speechies, OTs, different people who specialise in this, returning to work, returning to school kind of phase and can really help and advise people on staging it, maybe having a little trial, maybe doing some work from home as well as work in the office, weaning themselves back into a workload.

And I think expectations again, and this is very important, our own personal expectations of “this is probably going to go slower than I want it to, or than I think it should”, because there's always things that we haven't thought of, haven’t expected that will make things a little bit more difficult.

So staging it out, having support is very, very important. Not trying to do that on your own. Support of your family, support of your colleagues. Obviously there needs to be a very honest conversation with bosses and the right colleagues to talk about maybe some of the deficits that still remain, some of the issues that might be at play.

But having that right professional, I think alongside you, psychologist, OT, speechie, whatever it might be to even do some workplace visits to help, the set up, but certainly to come back to going, “I'm struggling with this. Can you help me? What do I do here?” is really important, but not impossible.

You know, there might be some changes, but I love it when we can see people go from stroke back to work. And what a great celebration that is. When people get back into a job, it might not be the same one. Maybe it is, but some form of meaningful work, I think is hugely beneficial to people in their recovery.

Paul: And this might be out of sort of your area of expertise. But I am just curious, do you see any fear from stroke survivors about going back to work?

Jessica: Yeah

Paul: Because I attempted it. And I must admit, either it was… I put a lot of pressure on myself. And I had real fear about, can I make this work? Am I going to make a complete goon out of myself?

Jessica: That makes a lot of sense, right? You've had a brain injury. You're not quite sure of your capabilities. You know, I trusted this brain. And it let me down. And now I'm not sure where I stand with everything. So I think that's a really honest experience, you know, that I think a lot of people have had.

So again, I think having that conversation and that's where I think talking and being honest about some of these things with your partner, with your family, with Allied Health professional is really important because I think they might be able to be honest enough back with you to say, yes. I do think actually this is going to be an area that you struggle with.

So what do we do about that? Can we get some support with that? How do we how do we work on that? Because sometimes the stroke patient themselves is a little bit unaware of some of the difficulties that they might face going forward.

But some people are very aware and can self-evaluate quite well. Sometimes it's just a confidence thing.

And again, I think this is where Allied Health professionals have a huge role to play in just helping people build up their confidence, reminding them of how far they've come, reminding them that “do you remember when you couldn't do this, but now you can do this and man, your problem solving skills are so great. You know, I think you're going to do really well here.

Yes. You might need to have someone in place that you can just run that thing past, but you have improved so much. I really think this is a great thing for you to be planning for.”

So just some honest feedback from trusted people around you is hugely important in working out what the future looks like. And you know, how did you feel then, Paul, when you decided not to return to that work?

Was that grief for you or was it an opportunity for something else?

Paul: Yeah, honestly, it was… the decision was very much taken out of my hands. I tried an attempt and tried an attempt and I became very hardheaded. I became very stubborn and very difficult to deal with. And particularly at that time, I turned into… I turned into a two-year-old when I got tired.

Jessica: Ok, yeah.

Paul: Yeah. And work was a big part of my identity. It was a big part of who I am. And yeah when that was taken away, it took me years to try and reinvent myself. And that was a process.

Jessica: And that's more grief, right? More grief. Because as you say, work is what we've trained for. This is who we are. This is what we do. And it's the loss of yet something else.

So I don't think that should be underestimated. And again, I emphasise the need at different times to maybe have a counsellor, have a psychologist to talk some of that grief. It's grief. It's real. And you feel robbed. So, yeah. Then next steps become very hard.

And at that point, do you just withdraw and sit in that place of, I can't do anything? Or are there other opportunities moving forward? But you just need a little bit of help working out what those are. Talking that through, the emotions around that, I think is vitally important for our mental health.

Paul: It's not again, it's maybe this is just how I used to think, but it's not a linear journey. It's trial and error.

Jessica: Yeah, good

Paul: For any of this sort of stuff. But I guess, yeah, therapy or, you know, rediscovering an identity, it's you try this and it works. You keep doing it until it doesn't, and then you try something else. And I think that's what. Well, that's how I did it anyway.

Jessica: I think that's great. And I think we, as a society, need to view “failure” I say that in inverted commas, as not a negative thing.

I think having a go at something is the win. Like great job. You tried something. Maybe it didn't work the way you thought. Okay, let's that one maybe is ruled out, but what can we take from that? What can we learn and put into a new direction?

I think we have to reframe having a go and maybe it doesn't work. That's okay. We learn and we move. We move on. That is the only way really to move on is to give something a go. So it's difficult though. It's difficult because we don't want to fail. You want to get it wrong.

Paul: No, failure is scary.

Jessica: Totally, yeah.

Paul: Yeah. How do you support the families and the colleagues of someone that's had a stroke?

Jessica: Yeah. Again, I just the lines between the different professions get a little bit blurred, but I think sometimes that's okay because I think it's our role to be able to identify other things that need attention. So “I really feel like you need to go and see an OT about this or a psychologist about this”.

I think in a way, health professionals should also act as kind of case managers, for sometimes you might be the only person people are seeing and you're trained to recognise things that are outside your scope but that someone else might be able to help with. That could be a huge support, to be able to say, “listen an OT going to be able to help you with your scheduling or give you some utensils that you can use that will really help you to be independent in your eating and drinking.

hey might not know this. So our role is to lead people in the right direction to get the help that they need. I also think sometimes they might not or can't access those services at different times for whatever reasons. So again, the blurry lines of being able to go, I think you need an OT, you can't see one at the moment, but here's some links.

This is what I know that I would tell you about. Here's some links. Try this one out. Or have a look at these couple of things, purchase one, have a go at home and let's keep talking about it. I think being able to see the person holistically and understand that there is more going on than just the physical needs or just the emotional needs.

There is so much at play and helping the family, the colleagues to understand that and being that advocate for the stroke survivor that they have skills, they have abilities, they just need a little bit of extra support at the moment.

So Zoom meetings, conversations with employees, family members, whoever it might be, is an important part of, I think, giving therapy and being an advocate to the person to be able to again get back into a really meaningful future.

Paul: It's really that engagement with the body. Proactive, yeah.

Jessica: There’s no silos in recovery.

Paul: What other resources are there out there available for survivors and families? We talked about, you know, Allied Health professionals and we talked about some tech stuff. What else is out there?

Jessica: I think support groups, there are some support groups out there that some of my clients have been a part of, which I think have been excellent. Excellent.

I think groups are a great way for people to be in touch with other people who maybe have had similar.. this podcast Paul, I think is fabulous. It helps people to understand there's others out there that are having similar experiences to me and it's a resource to people. It's fabulous.

Paul: Thanks Jess!

Jessica: No worries. I think it's great. Understanding that other people are going through tough times too. They will have had services or ideas that they can pass on, it’s that sharing together of that common experience is beautiful. So support groups, therapy groups, there's online versions of that, there’s face to face versions of that. There's some awesome more activity-based groups for stroke survivors as well that I have heard of.

I think probably this is particularly in cities, which is again unfortunate for people in regional areas, but choirs and, you know, just common interest kind of groups.

I think things like Men's Shed can be excellent just for people to go to and have company and practice those talking skills that they've got, but in a way that if they can, they can be using their hands and talking at the same time.

Yeah. So I think there's online support. I think that group environment is quite important for all people, but definitely for young people as they're trying to navigate what's out there, what can I access? Who might have more information about something that's of interest to me? So again, not being in that silo withdrawing alone, but reaching out into some form of community that might be able to assist.

Paul: So what are the some of the more exciting developments in the speech therapy space, you know, for stroke survivors or otherwise? Is there anything cool happening in your world?

Jessica: There's always research going on around stroke and obviously predominantly around how we can best treat people. So again, use of technology, forms of therapy or therapy programs that can target multi layers of impairment, you know, not just targeting one thing but targeting multifactorial kind of things at the same time.

So there is always research going on in there as well as what is the best way of receiving therapy, how much do we need for the best long term outcomes. AAC, so alternative and augmentative communication, if you have heard of that, that is..

Paul: No

Jessica: Alternative methods to communicate. So it might be a communication board or using an iPad with an app on it that if someone cannot speak, they can type in the word or they use pictures to communicate for them.

Huge part of the speech pathology world because again, we want people to be able to communicate. How can we help people do that? We will use technology to help people do that. We will work on people's voices so that they're stronger and louder so that their voice can be heard. But our role is to advocate for people's voice, for their communication.

And so we will use whatever means that we have to try to try and do that and in that, accessing different funding models so that people can get therapy is another big one that I think we need to have an awareness of. So that we can help our clients access what they need that's out there to be able to get the therapy that they need.

Paul: So how does somebody find a speech therapist? You know, hypothetically speaking, if they haven't, they're not linked in with someone that's doing a referral. How does someone find one?

Jessica: Again, website is the best place Speech Pathology Australia. If you pop that in, it has a website with I think the tab is ‘find a speech pathologist’. You pop in your area and a bunch of different ones will come up and normally that will have the area of specialty.

So that is probably the best way to do that. Your GP will probably know of some in the area, but again, word of mouth, if you're in some form of local support group, they might have some ideas of people around you, but I would say the website is the best way.

And I just want to say on that, I do, I think we had this conversation before Paul, but I think I mentioned people initially have probably more the physical things in mind and it's down the track that they might go, you know what?

There's some other things here that I didn't realise I was struggling with and I'm not getting my words out or I'm not understanding jokes like I used to. I'm not getting them.

That might be a little indicator that, yeah, maybe a speechie is someone that I need to have a chat with and they won't necessarily lay out here’s your worksheets this is what I just need you to do these drill exercises. It could be much more conversational and goal-orientated to get you to improve in that specific area that you've noticed.

So these things might crop up down the track, but it's never too late to put your hand up and say, “I just need some help, can you help me? And if you can't, can you direct me to someone who might be able to?”

Paul: So, the one question I always ask my guests at the conclusion of our chats is, do you have one piece of advice that you'd like to offer to stroke survivors or their families? You know that one nugget of wisdom that they can take away and maybe implement or at least think about, do you have anything that you'd like to share on that front?

Jessica: Yes. And I think I'm just speaking out of some of the conversations I've had recently. Where my heart breaks, I suppose, for people is, I think it's you're not alone. I think that is my message. And I say that not only to stroke survivors but to the families of stroke survivors is you're not alone. And there are other people out there who have experienced the same or similar things that can be a huge support to you.

I think you can, it can be very isolating, feeling like I'm home from hospital, now what do I do with this person who's now in a wheelchair? I think there's always places you can go for support, so it's exhausting. I really do get that. But put your hand up. Ask a GP, ask the questions, search the websites, go to a speechie and say,

“My husband's had a stroke, my wife's had a stroke. This is what I'm seeing. What do I do? Am I going crazy or is this something that can be helped?”

I just think reaching out and asking are there services that can help is a key because generally there are. You just might not be aware of it. And I think the worst and most exhausting thing is to attempt to do it all yourself, at home, when there are services and avenues around you that will be of some assistance, even if it's online, even if it's a telehealth situation, even if it's an online support group, even if it's listening to this podcast, there are things out there that will help you not feel so alone and isolated.

Paul: I think that's fantastic. And just to add just a little bit to the end of that, because I think it's a really good point, is sometimes you can knock on a door and not quite get the support you need for a variety of reasons. Everybody's out there doing the best they can with what they have. I think it's key to keep knocking.

Jessica: I love that.

Paul: If you need help, keep knocking until you get the help. That takes energy, but it's so necessary. Don't be discouraged if you're not immediately getting help. There are ways and means.

Jessica: That's it. And you'll find that one person eventually, who goes, “yeah, let me help. I'll find someone for you”.

Paul: I think that's a fantastic place to end it on. Thank you so much for your time today. That was a brilliant chat.

Jessica: No worries, great to talk about these things. And like I said, I think it's hugely beneficial to people to hear from all the therapies about hopefully ways that we can be of help. So thanks, Paul.

Paul: You're very welcome.