Touch and sensation

Episode 15, 21 February 2018

Read the transcript below

Stroke can affect the way you experience the world around you, as well as the way you move.

Problems with perception, the senses of touch and temperature, numbness, pins and needles, and proprioception (the sense of where your body parts are and how they're moving), as well as sensory overload, can greatly affect your daily life. In this podcast, we talk about coping with sensory issues and what you can do about them.

Our guests are physiotherapist and researcher Professor Susan Hillier from the University of South Australia, stroke survivor Karen Bayly, and occupational therapist Kirsty Cole from StrokeLine.

Podcast transcript

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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.

The advice given in this podcast is general in nature and you should discuss your own personal needs and circumstances with your healthcare professionals.

You can join the conversation at enableme.org.au. This series is presented by Australia’s Stroke Foundation, working to prevent, treat and beat stroke.

Chris: Stroke can change not only your ability to move, but the way you experience the world around you through your senses. Perception of touch and temperature, numbness, pins and needles, issues with proprioception, as well as oversensitivity and sensory overload, can really affect your daily life. In this podcast, we talk about coping with sensory issues and what you can do about them.

To help us with this, we have in the studio stroke survivor Karen Bayly, as well as occupational therapist Kirsty Cole from StrokeLine. Thank you both for coming in.

Kirsty: Thanks, Chris.

Karen: Thank you.

Chris: And on the phone we have Professor Susan Hillier from the University of South Australia. Susan is a physiotherapist and researcher with teaching and research interests in neuroscience and rehabilitation, and she's also a member of the Stroke Foundation’s Clinical Council. Thank you for joining us, Susan.

Susan: No worries.

Chris: Now, I'd like to start with you, Karen. You're no stranger to these podcasts, you were a guest on our very first episode talking about rehabilitation and neuroplasticity. Now in that episode, you told us your stroke story, but for now, could you just give us a brief recap of when your stroke happened and the initial treatment you received?

Karen: Thanks, Chris. Yes, I had my stroke eight years ago, and my children were aged three and two. There weren't any warning signs, and I had a massive stroke that caused complete paralysis in one side of my body. Ultimate testing showed that it was the result of a defect with my heart, so I got to hospital quickly, I received clot busting treatment to get oxygen back to my brain.

The paralysis in my face resolved itself quite quickly, and within about 12 hours I was up and walking. I had ongoing rehabilitation to do with impact on my balance, but I was walking, so initially that involved a lot of therapy to get my arm moving again.

Chris: Okay. When you recovered that movement, though, I understand that you still had some sensory issues that were ongoing. What was that like?

Karen: Okay, so eight years on I still have those sensory issues. I didn't know where my arm was. So things were happening while I was in hospital, like I would get up out of bed to walk across the room to go to the bathroom, and the bathroom door would hit me on the side of the head, and I would turn around and find that my arm was hooked around the door. So, I didn't have any sense of where my arm and hand were and what they were doing. I didn't have any sense of touch at all.

They do testing to see if you can distinguish between hot and cold, and I'm like, "Well, is anything even touching me?" And they also do testing to see if you can distinguish between sharp and blunt, and again it's like, "Well, is anything actually touching me?”

So, I think people look at a person who is able to move their arm and think everything is okay. But I describe it as a bit like being blind. Your eyes move, but they're not effective. So if you can move your arm but you have no idea where it is or what it's doing or you getting no touch feedback at all, then it's very limited ability to use it.

Chris: You recently talked about these kind of issues in a blog on EnableMe, and you also mentioned, though, the emotional impact of this sensory problem, how that was how that was intertwined with the physical effects. Can you tell us a bit about that?

Karen: Yeah, sure. I think many stroke survivors experience grieving, and for me the grieving was a lot around how difficult it was for me to do every little thing throughout the day: an inability to do my own hair, put on the jewellery that I wanted to do. To get myself dressed involved shutting myself in a completely silent room for 15 minutes, which, when you're parenting two pre-school-age children, is complex.

There was also grieving around how difficult it was to spend time with my children, just because of the impact of their busyness on my brain, and all of the things that I wanted to be able to do with them and for them that I was really struggling to do.

So, I made a decision early on that I was going to be high-functioning. I was going to return to work, I was going to be the best parent I could be, and I was being those things, but it was coming at the cost of really significant cognitive fatigue. By about five o'clock every day I truly had no emotional resilience left. My brain really was in shutdown point. You know, when you're living like that, life isn't very pleasurable.

Chris: It is clearly a very big impact, but it also seems to be one that affects a lot of stroke survivors. Susan, if I could ask you then, do we know why people have these sort of problems that Karen's been describing?

Karen: Yes we do. Yes, there's a few things going on. There are a lot of senses that we use to navigate our environment and to know where we are in space and what we're doing and what we're touching and what we're seeing and what we're hearing obviously.

And now, in this case we're talking about the senses of the body, there's one basic one that everybody knows about. We know what we're touching through these little pressure detectors under our skin. And our brain normally picks up these messages and interprets them.

Now, in a stroke, those messages are being detected by the little pressure sensors in the skin, but the part of the brain that appreciates them, and literally makes sense of these messages coming into the brain, is damaged. Now, like anything with stroke, that part of the brain could be actually quite dead, those neurons might have all died as part of the stroke. They might have some diminished function, so then we'll get a sort of faulty message, so some weird sort of numbness.

Even the pins and needles that people describe, is just a misinterpretation in a way, almost like a static-y phone line. The messages just aren't quite getting through properly. But it's at the brain end in the case of stroke. Obviously, you can get pins and needles from other sorts of things like problems in the nerves and the body itself, but in this instance it's the brain that's the issue.

And then the other thing that Karen described was that, almost like she would forget about her arm. That can just be the sensory loss, like you just literally don't feel it anymore, but then there's an even more difficult sort of phenomenon to understand, is that you can actually forget that a body part is yours.

So we also have this very hidden sense, called a sense of ownership. We know that we've got body parts and that they belong to us. And in a very bizarre way in stroke, people can lose that sense of body parts. They can even lose a sense of space like the left side of space or something. So these are more perceptual disorders, they, as Karen described really beautifully, they are incredibly, well, discombobulating, because they're hidden. Nobody knows. Who knew that you knew that you had an arm, and now you don’t know that you've got an arm, but nobody knows it. So they're incredibly difficult stroke sequelae to deal with.

Chris: Okay. What about proprioception? Is that related as well? I guess if we're gonna talk about proprioception, we should get you to explain what that is.

Karen: Yes. Sure. Now, this is one of my favourite senses, actually. It's complex. So there's quite a few different little receptors in our body, in our tissues, that tell us where we are in space at any particular time, or they tell us, if you shut your eyes and you let your hand dangle, you can feel that your fingers are facing down and that your wrist is bent without looking at it. So that sense of the position in space. And then also if we shut our eyes and we move our arm in a circle, we know it's a circle and we know how fast it is and we know the direction. That's all proprioception. The sense of position and motion in space.

And it's quite a remarkable thing. It's probably not entirely well understood, but the little detectors for this that we use mostly are fantastic little kind of strain gauges in the muscles themselves, within the muscle fibres, or in between the muscle fibres of the muscle. So, if you can't move very well, then you can't sense movement very well. So it's a bit of a double-edged sword for people who've got movement difficulties after stroke. Now there are little receptors in the soft tissues of the joints, the ligaments, but they tend to be more of a warning receptor. So if your joint stretches too far you get this sense of, 'Oh, I know where I am now, I’d better not go any further.' So they're the main ones that we know about, that we understand the best, but there's other aspects to proprioception. But it is one of those amazing senses that, again, most people don't stop to think or be aware that they've even got it. So when you lose it, it's sort of hidden.

Chris: I feel a little bit like I'm just rattling off a list of different senses here, but we did put out a call for questions for this podcast. We had some people talking about things like taste and smell as well. Are they also related to these touch and other senses?

Karen: Well, they're similar in that they've got little receptors, these little detectors in the body itself that pick up signals from the environment, and then send those signals to the brain and then the brain interprets. And absolutely, taste, smell, vision, hearing, all of them – so, obviously the eyes are the little detectors for vision, the ears are for hearing, and then taste is in the tongue partly, and smell in the nose. And, again, if people have problems with these after stroke, it's because the different parts of the brain that receive these signals and then make sense of them, either aren't working at all, in very drastic cases, or working a little bit and actually often coming to the wrong conclusion. So people can miss-smell things or miss-see things, for example.

So all of the senses follow that kind of path where they're picking up signals, sending them to the brain, but depending on where the stroke is, which part of the brain's affected, then our ability to actually make use of those incoming signals can be really impaired.

Chris: Now, another question though that we were asked, a couple of people asked about, was, well, they described changes in their sensation in the months or years after their stroke, both in the intensity, like pins and needles coming and going, and the location of where they feel it on their body. Is that a common occurrence? And why would that happen?

Susan: A lot of these long term problems are not actually well understood, but I do hear this a lot as a clinician as well, and I've learnt a lot listening to my clients over the years about these strange long term things, and as best as we know, this is really an example of neuroplasticity. So I think, you know in the press, neuroplasticity has kind of got this holy image that it's all marvellous and it's all recovering the brain's ability to change. Well yes, the brain can change, but it can change in a way that's not particularly helpful.

So, to the best of our knowledge at the moment, these longer term changes can be viewed as faulty rewiring, so we're hoping for the neuroplastic changes, the positive rewiring, these sorts of changes can be a negative rewiring, if you like. Now, I do have a bit of a theory that, as we know with movement it's a bit of use or lose it, and I do feel that probably with sensation, there's a bit of an element of that, that if people aren't able to use their senses well, then there can be problems longer term as a secondary thing. But, basically, the short answer is, the best we know, faulty rewiring as opposed to positive.

Chris: Okay. Sounds like that leads well into a discussion about rehabilitation, but there’s other thing I wanted to ask both you and Karen about before that, which is, I suppose, that when we're talking about some of these sensory issues it sounds like we're talking about numbness and loss of the sense, but then there comes with it an oversensitivity as well, where like a touch can be painful and then lead into sensory overload, which I know that you talked about, Karen. Can you describe what sensory overload is like in your experience?

Karen: Yeah, sure. Thanks, Chris. If I could just follow on from what Susan was saying, my experience is that going along with the imperfect understanding of the brain, of the messages that it's receiving, comes tactile defensiveness, which… It's painful for things to be in contact with your skin, and your brain is in almost constant fight or flight, and also going on along with that is 24/7 neuropathic pain through the whole left side of my body. So, for me it feels like all of my muscles are really, really big, thick elastic bands that are being pulled as tight as someone can possibly pull them all of the time, and as I fatigue, those things become a lot more pronounced, to the point that really I'm in so much pain, I really can't function.

So to comment on sensory overload or sensory overstimulation, it's most commonly understood in children with autism spectrum disorders. So, what it's like for me is my brain doesn't filter information in the environment around me. So movement, multiple conversations or noise sources, bright lights, all of those things instead of my brain just putting them to the background and focusing on the thing I need to focus on, my brain focuses on all of it, to the point that I'm actually in distress and, again, my brain has just taken in so much information it's like it's short circuiting, and again, that really ramps up the pain that I experience.

So it's one of the biggest challenges for me all day every day, how do I get through life where I'm wanting to and needing to earn an income, working in an open plan office, regularly being in quite long meetings where I'm really concentrating on things that lots of different people are saying, and the time when I'm not at work I'm around children and my children are now quite a bit older. They're now 12 and 10, but they still don't understand that they can't both talk to me at the same time, and they always do. And when they're not both talking to me at the same time they're fighting with one another.

So it impacts on my ability to take children into environments kids love: indoor heated swimming centres, shopping centres, Timezone, an adventure playground ... anything where there's lots and lots of kids and lots of movement is really quite difficult for me, and so we need to think of some strategies of how we manage that.

Chris: Susan, does that fit in with your experience?

Susan: Oh, absolutely. I think that's really, really, really so beautifully put, for not a very beautiful phenomenon. So, because we've got so many senses, as Karen described, the word 'overload' kind of gives it away. Our brain does something quite marvellous, it actually inhibits us noticing or paying attention to, or giving any weight to most of the senses that are coming from our body, coming from our little receptors. So this is a phenomenal job that goes on in the background all the time. So, actually what we've learnt to do is ignore them and we learn to pay attention to what is most useful.

Now that part of the functioning of the brain can be affected after stroke, and I can't put it any better than Karen, is that everything kind of overwhelms all of the different senses, then overwhelm rather than being purposeful and only select bits and pieces from each sense to get the whole picture, it is like the orchestra tuning up is how somebody once described it to me.

Karen's right, finding strategies to be in environments where there isn't so many different modes of sensory experience coming in, only going in those environments when you're really fresh so that your brain is at its best, and talking about it really sensibly as Karen's done with her children, to say, "I just can't cope.”

Interestingly, when you talk about this stuff, there's actually a lot of people who haven't got a stroke who have this and they kind of ignore it, but they wonder why being in public is so taxing for them. It's worthwhile having a conversation with almost anybody, 'cause there's a lot of people who have a version of this experience. That's, you could say, a sensory overload in a way, perceptual and cognitive overload, because it's the whole process where it's just too much.

If you want me to go back to the tactile defensiveness stuff, yes this sort of oversensitivity is relatively common after stroke as well. And it could be partly a miswiring, and it often is related to pain as Karen said, what we call neuropathic pain, which is where there's not tissue damage, which is picked up by a different set of little receptors called nociceptors, there's nothing actually wrong with the muscles as such, but the signals that are going to the brain from the muscles are being interpreted as pain, even though there isn't anything wrong with the muscles.

And this, again, you don't have to have a stroke to have this kind of pain. There's lots of other syndromes that have it, but it is a particularly nasty sort of pain. Again, it's a misperception, but that sounds like just a simple thing. It's not. It's like a phantom pain. It's very insidious and it's very tiring.

With the miswiring as well, Karen also talked about something where, if she just gets a normal touch, like a piece of cotton wool on the skin will feel like it's a painful stimulus. That's called allodynia, and it's where the brain is completely misinterpreting sensation. So there's a complete kind of miswiring and we do see that a fair bit with people with certain kinds of pain syndromes after stroke, but also after other injuries as well.

And this rewiring can be quite bizarre. I remember in one of our sensory trials, we tested the touch sensation of a man on his feet, and he consistently, if we touched him on his right big toe, he consistently always felt it on his middle left toe. Now it wasn't a problem with left or right, he just had this complete miswiring of appreciation of even where the touch was from one side to the other, from his more stroke-affected side to the other.

So, the capacity for miswiring is quite extraordinary.

Announcer: This is the EnableMe Podcast, enableme.org.au

 People call StrokeLine for many different reasons during their recovery. Some call from their hospital bed, others might call years down the track. The stroke journey can be a rollercoaster, and no matter what stage you are in, we're here to help make that ride a little smoother.

StrokeLine is staffed by a team of qualified health professionals who have the latest evidence-based information. A big part of what the StrokeLine team does is help to break the problem down, providing information on different treatment options, resources and services, and working out the best option for you.

So whether you are setting new goals to get back to driving or work, or trying to find the approach to communication that works for you, or perhaps a carer finding it a bit tough, StrokeLine is there for you. Call 1800 STROKE. That's 1800 787 653.

Chris: I think it's probably a good point, I suppose, when we’re talking about issues of neuropathic pain and those kind of things, to remind people that we have discussed some of these topics in our previous podcasts. If you go onto the EnableMe website you can find our podcast on pain, we talked quite a bit at length about this. We’ve also got podcasts on fatigue and spasticity, which I know often comes up in this sort of area.

But I suppose now, because we are talking specifically about some of these other sensory issues, and it sounds like it's what you're saying, Susan, which is a matter of guiding the rewiring of the brain. So, what kind of things can people do in terms of rehabilitation for sensory issues?

Susan: Yeah, you're right. Guiding the rewiring is really a great way to put it. So we want it to be purposeful. And to the best of our knowledge at the moment, it's like, you had a podcast about neuroplasticity and you know some of the guiding principles around the use-it-or-lose-it, and it has to be very task-specific, it that has to be meaningful to the person so that the brain is more likely to wire around meaning.

So, the current evidence of sensory retraining is literally around that. There's some great work done by Leeanne Carey in Australia and others internationally about training the specific senses. So just like you might have specific training to compensate for visual loss, and you know that mobility instructors and OTs and that, and so forth, when you’re working with walking will help train you to develop some compensations around that.

With tactile loss, there's some good evidence that that can be relearned. It has all those other criteria though, you need to practise a lot, it needs to be accurate, it needs to be meaningful and purposeful, so it needs to make sense in other words. So the sort of protocols of sensory retraining will use everyday objects and practise everyday tasks, but then instead of you practising the movement as such, you're actually practising paying attention to very specific, controlled sensory inputs. So it requires a fair bit of concentration, but as I said, the evidence is emerging really well.

We've done some studies too about training proprioception, and again there’s the same kind of criteria. It needs to be fairly purposeful, it needs to be intense, the person needs to be fully engaged, but we're quietly confident that this is one of the newer frontiers of rehabilitation. People will laugh when I say newer, because it's actually been around for a long time. But I think because it is so intensive, it hasn't maybe received the attention that it deserves in the rehab settings sometimes.

My other point about why it's so important is, obviously there's a safety issue about being able to appreciate touch, but if you think about the movement senses, and we have a feedback loop in our body, we do a movement, we get immediate feedback about how good that movement was and we correct and we modify and we get better. And that's learning.

If we don't have correct feedback, it's very difficult to get learning. It's a bit like, you remember when you were a student but the teacher never told you how you were getting on? It's much harder to learn, because you don't know what's right and what's wrong or what's better or what's worse. So we're particularly interested in retraining sensation to actually improve the quality of movement, as well as the safety of people in their environment.

Chris: Okay. Now, you mentioned Leeanne Carey's work there, which, I believe, is the SENSe programme that she developed…

Susan: Yes.

Chris: ... Karen, you were one of the first people to go through that, is that correct?

Karen: Yes. So, Chris, I was really fortunate, while I was a patient in a rehabilitation hospital that my physiotherapist had done her PhD under Leeanne Carey. She'd done her PhD on how sensory loss impacts on movement. So the therapy was primarily physical therapy, making sure I got good movement and effective movement in my arm and hand, but at least she had some knowledge about the sensory aspects of that.

But I was discharged from hospital with the hospital having really offered me everything that they could, and the sensory loss was still having a really significant impact on my life and the lives of my children. And my physiotherapist had talked to me about the work that Leeanne Carey does at the Florey Neuroscience Institutes. I'm extraordinarily fortunate that I live 10 minutes away from the Heidelberg campus of the Melbourne Brain Centre, and also fortunate that I'm a reasonably confident person.

So I Google searched Dr Leeanne Carey and it's like, here's this really, really important brain researcher, and emailed her and said, "Hi, Leeanne, I'm Karen and my brain's really interesting, and I'd like to come and be your guinea pig please.”

I participated in a couple of rounds of the research that underpins the SENSe retraining program that many therapists are now trained in, and it's offered in some rehabilitation hospitals. So, as Susan said, it requires an incredible amount of concentration. It's absolutely exhausting to try and make sense of the really fine grain differences in different things you might be touching when you're struggling to understand that you're touching them at all. So it's really exhausting.

So for me what that involved, in a research setting, was blocks of six weeks of therapy with MRI scans before, during and afterwards to measure brain change. And what those MRI scans showed is that when images were being taken of my brain while my fingers were moving over different surfaces, my whole brain was firing off, trying to find the information it was looking for. And that whole brain firing off, trying to make sense of things, was part of what was contributing to really significant cognitive fatigue. And what happened over the course of the therapy is that the brain activation really, really, really settled down in one place in my brain, and it settled down right next to the site of my stroke. So, it was therapy in proprioception, so finger, wrist and elbow position, and also retraining sense of touch and then applying those two things in my selected everyday tasks. So it was goal-orientated.

Chris: Did that work a lot for you? Did it improve your sensory problems?

Karen: Oh, absolutely. I mean, I still manage imperfect sense of touch, but, I mean, just to let you know the sorts of things that I worked on, when I was discharged from hospital, I had reasonably long hair and I couldn't tie up my own hair in just a basic ponytail. So one of the things that I worked on in my SENSe therapy was an ability to plait my pre-school age daughter's hair.

So she'd reached the age where she wanted Mummy to do pretty girly things to her hair and I couldn't actually even tie her hair in a ponytail and she wanted me to plait her hair. So, over the course of the therapy I can now successfully plait her hair. It's not something that we do in a hurry on a school morning, but with a quiet environment and as Susan's saying, when I'm fresh and with time and quiet, yes I can plait her hair.

But not only that, I did a lot of craft before my stroke, and as I was going through a lot of the grieving impacts of my stroke, I really turned to craft as a meditative thing that re-centred me in my own body and helped me just find quiet in all of that sensory overload and grieving.

And one of the things that I wanted to be able to do was to be able to crochet again. And that's an incredibly complex task if you don't have any feeling or understanding of where your fingers are and what they're doing, but with persistence I now not only crochet, but I crochet blankets. So it's not like I'm struggling to crotchet a basic square; I crotchet rugs. So, I really have very high order functioning. It's still hard work and it's still exhausting, but there's really not very much that I want to be able to do with my hands now that I can't.

Chris: Okay. That sounds like it's quite a bit of improvement there.

Susan, what else, do you have any other, before we finish up, any other recommendations for treatment for sensory issues?

Susan: I think just to reiterate that we're really working, there's a lot of us working hard to get this to people's attention – and there's a bit of a pun in there, bringing senses to attention – with the sort of push on rehab is to get people moving and out and quickly. And I think Karen's example of the things that give us pleasure in life, if we can pay attention to those things in rehab, and these really subtle impairments that can make them just too difficult to try. 

Karen's obviously got an extraordinary amount of motivation and persistence, and for people listening to the podcast, that would be my message, is if you want to improve these things, talk to your therapist and think about your own motivation and your ability to persist because, with any of these kinds of retraining protocols and schedules, what you bring to the table is absolutely paramount and these sort of marvellous stories that Karen's told us. I still can't plait, Karen, so I think I might have come to you. Fortunately, I didn't have daughters. That's probably a good thing. But they’re terrific tales of encouragement, but it's qualified by hard work.

Chris: Fantastic. Karen, do you have any other final advice for stroke survivors?

Karen: Yeah. My advice for stroke survivors would be, pay attention to your emotional recovery. Find the things in life that bring you joy and bring you peace, and connect with other stroke survivors and understand, the complex battle that you're having with yourself, you're not alone. Share advice and tips and support with other survivors, and find the strategies that help you live the best life that you can.

Chris: Well thank you both, Karen and Susan, for sharing your knowledge and experience on this fairly complex topic. So that was stroke survivor Karen Bayly and Professor Susan Hillier.

Announcer: You're listening to the EnableMe Podcast, enableme.org.au.

If you are a family member or friend of someone that has had a stroke, you know that it's just the start of a long journey to reclaim their life. As one of Australia's biggest killers and the leading cause of adult disability, we still have a long way to go until we can say we have beaten it.

At the Stroke Foundation, we draw our inspiration from the determination and persistence of stroke survivors. And that's why we work every day to prevent, treat and beat stroke.

There are many ways you can join us to fight stroke, including: volunteering your time; telling your story for us to share with the media; speaking up and approaching your local member of parliament with our advocacy team; getting your workplace or community group behind an event like National Stroke Week or Stride4stroke; running a fundraiser, donating or leaving a lasting gift in your will; or just by sharing the F.A.S.T. message with the people around you, so all Australians will know how to recognise a stroke and act fast.

Join the Fight Stroke team. Find out more at strokefoundation.org.au

Chris: Finally today we have Kirsty Cole. Kirsty is an occupational therapist, and she can also be heard on the Stroke Foundation's StrokeLine. Thanks again for coming in, Kirsty.

Kirsty: Thanks, Chris.

Chris: Now, I mentioned there that you're an occupational therapist, sorry I should say an OT, people might be familiar with that terminology. What is an OT's role in helping people with sensory issues?

Kirsty: Well Chris, we start by looking at how the sensory issue is impacting on the person's everyday activities. So if the person has experienced sensory loss, we begin by looking at strategies to improve their safety during tasks, like cooking and personal care.

This brings me to the other part of the OT role, which is around sensory retraining. So we've already heard quite a bit from Karen and Susan about sensory retraining and what it involves, and so basically as OTs we're working with the stroke survivor to train the brain to regain that sense of touch. So the person works at identifying different textures and objects to then use them in their daily activities.

Chris: So that's similar to what Karen was talking about, that she retrained her senses by doing practical things like the crochet and plaiting her daughter's hair.

Kirsty: Mmm, yes. So, repetition is key, as is doing meaningful tasks. We also heard about proprioception, so as therapists we work with the person on their ability to know where their arm and hand is in space without looking, and professor Carey's SENSe approach, which Karen was talking about, looks at these types of sensory retraining that I've mentioned.

A therapist might also use thermal stimulation using hot and cold, they might use electrical stimulation on the affected side, and we often see improvement in proprioception when we're using constraint induced movement therapy as well. So, as you've heard from Karen and Susan, movement and sensation are quite closely linked, and as movement improves sensation does as well, because the repetitions of movement improve sensation at the same time. So the idea is, if you feel something over and over again, the part of the brain that listens to that feeling expands as per the rules of neuroplasticity that we were talking about.

Chris: Okay, now you mentioned at the start there that it's helping people not hurt themselves when they have sensory issues, I suppose this relates to what Karen was also talking about, how she would get her arm stuck on the door for instance. What can people do if they have ongoing issues, to try to make their home safe or to stop injuring themselves?

Kirsty: There's lots of different strategies, and I will go through some of the more common ones. And it can be helpful to talk to your therapist about what strategies might suit your particular situation, because those protective sensations, being able to feel pain and really hot temperatures, are really important, because if you're not able to immediately identify something's hot, then you're at risk of burning yourself when using the stove or getting into the shower. So, a strategy for that might be testing the water before you go to put your hand in a sink full of hot water, with the hand where the sensation is intact.

Also, where sensation is lost or diminished, your skin is at high risk of pressure injury as well, so in order to manage pressure injuries it's really important to be working with your health professionals.

Chris: What do you mean by pressure injuries?

Kirsty: Oh, things like feeling sharp sensations or prolonged pressure on the hand, so an injury from carrying a bag with a handle that's really narrow or might be cutting into your skin, so that prolonged pressure can cause injury, and if you're not aware that that's uncomfortable and causing pain then you might not see the skin becoming red. And some other common ways to avoid injury, say in the kitchen, is being careful with using metal utensils when you're cooking, because if you leave that in a pot, obviously it can heat up.

Then elsewhere in the house, you can try using enlarged handles on drawers or keys, on suitcases like I was talking about, to more evenly distribute that pressure on your hand.

It's also important to make sure that when you're moving from, say, a wheelchair to your bed or your chair, to look after that arm to make sure that you know where it is, because if you've not got the sensation and your arm drops down to the side, you can risk injuring your shoulders, or your skin can get caught on something as you're performing that movement from one seat to the other.

Chris: Those are some nice practical suggestions there. What else would be your top tips for stroke survivors dealing with sensory issues?

Kirsty: I guess the main thing is, the starting point would be to talk to a doctor about the sensation changes you've experienced post-stroke, and whether referral to allied health would be beneficial.

It can be helpful to find an OT or physio who are specialised in neurological rehabilitation, and there's directories of OTs and physios on the Physio Association website and the OT Australia website, and you can actually search by specialty. You can ask your therapist about SENSe training and some of the other therapies that we mentioned and whether it would be beneficial for you.

Try to use your affected arm as much as possible and try to keep your arm injury-free by getting help with the riskier activities. And of course, if you've got any questions about stroke treatment or recovery and support, you can give us a call on StrokeLine, which is 1800 787 653.

Chris: I should mention there, the SENSe training you've mentioned, that is the program developed by Leeanne Carey…

Kirsty: Yes.

Chris: ... and people can't access it directly through her laboratory, but therapists are trained in that program Isn't that correct?

Kirsty: Yes.

Chris: And that is something that people can look up.

Thank you for that, Kirsty. Remember now, if you want to speak to a health professional like Kirsty, you can call StrokeLine on 1800 787 653, that is 1800 STROKE, or you can ask a question through EnableMe and get a response from health professionals and other stroke survivors.

And that's all we had time for today. If you like what you've heard, please give us a good rating and review on iTunes, as that helps other people to find our podcast. Thank you once again to our guests, Karen Bayly, Susan Hillier and Kirsty Cole.

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 enableme.org.au. It's free to sign up and you can talk with thousands of other stroke survivors, carers and supporters. You can also suggest a topic or provide feedback on this podcast.

EnableMe has qualified 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 healthcare professionals.

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 facebook.com/studiofour99.

This EnableMe podcast series is produced by the Stroke Foundation in Australia, working to prevent, treat and beat stroke, strokefoundation.org.au.

Touch and sensation

Episode 15, 21 February 2018

Read the transcript below

Stroke can affect the way you experience the world around you, as well as the way you move.

Problems with perception, the senses of touch and temperature, numbness, pins and needles, and proprioception (the sense of where your body parts are and how they're moving), as well as sensory overload, can greatly affect your daily life. In this podcast, we talk about coping with sensory issues and what you can do about them.

Our guests are physiotherapist and researcher Professor Susan Hillier from the University of South Australia, stroke survivor Karen Bayly, and occupational therapist Kirsty Cole from StrokeLine.

Podcast transcript

Download the podcast transcript (RTF 264 KB)

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.

The advice given in this podcast is general in nature and you should discuss your own personal needs and circumstances with your healthcare professionals.

You can join the conversation at enableme.org.au. This series is presented by Australia’s Stroke Foundation, working to prevent, treat and beat stroke.

Chris: Stroke can change not only your ability to move, but the way you experience the world around you through your senses. Perception of touch and temperature, numbness, pins and needles, issues with proprioception, as well as oversensitivity and sensory overload, can really affect your daily life. In this podcast, we talk about coping with sensory issues and what you can do about them.

To help us with this, we have in the studio stroke survivor Karen Bayly, as well as occupational therapist Kirsty Cole from StrokeLine. Thank you both for coming in.

Kirsty: Thanks, Chris.

Karen: Thank you.

Chris: And on the phone we have Professor Susan Hillier from the University of South Australia. Susan is a physiotherapist and researcher with teaching and research interests in neuroscience and rehabilitation, and she's also a member of the Stroke Foundation’s Clinical Council. Thank you for joining us, Susan.

Susan: No worries.

Chris: Now, I'd like to start with you, Karen. You're no stranger to these podcasts, you were a guest on our very first episode talking about rehabilitation and neuroplasticity. Now in that episode, you told us your stroke story, but for now, could you just give us a brief recap of when your stroke happened and the initial treatment you received?

Karen: Thanks, Chris. Yes, I had my stroke eight years ago, and my children were aged three and two. There weren't any warning signs, and I had a massive stroke that caused complete paralysis in one side of my body. Ultimate testing showed that it was the result of a defect with my heart, so I got to hospital quickly, I received clot busting treatment to get oxygen back to my brain.

The paralysis in my face resolved itself quite quickly, and within about 12 hours I was up and walking. I had ongoing rehabilitation to do with impact on my balance, but I was walking, so initially that involved a lot of therapy to get my arm moving again.

Chris: Okay. When you recovered that movement, though, I understand that you still had some sensory issues that were ongoing. What was that like?

Karen: Okay, so eight years on I still have those sensory issues. I didn't know where my arm was. So things were happening while I was in hospital, like I would get up out of bed to walk across the room to go to the bathroom, and the bathroom door would hit me on the side of the head, and I would turn around and find that my arm was hooked around the door. So, I didn't have any sense of where my arm and hand were and what they were doing. I didn't have any sense of touch at all.

They do testing to see if you can distinguish between hot and cold, and I'm like, "Well, is anything even touching me?" And they also do testing to see if you can distinguish between sharp and blunt, and again it's like, "Well, is anything actually touching me?”

So, I think people look at a person who is able to move their arm and think everything is okay. But I describe it as a bit like being blind. Your eyes move, but they're not effective. So if you can move your arm but you have no idea where it is or what it's doing or you getting no touch feedback at all, then it's very limited ability to use it.

Chris: You recently talked about these kind of issues in a blog on EnableMe, and you also mentioned, though, the emotional impact of this sensory problem, how that was how that was intertwined with the physical effects. Can you tell us a bit about that?

Karen: Yeah, sure. I think many stroke survivors experience grieving, and for me the grieving was a lot around how difficult it was for me to do every little thing throughout the day: an inability to do my own hair, put on the jewellery that I wanted to do. To get myself dressed involved shutting myself in a completely silent room for 15 minutes, which, when you're parenting two pre-school-age children, is complex.

There was also grieving around how difficult it was to spend time with my children, just because of the impact of their busyness on my brain, and all of the things that I wanted to be able to do with them and for them that I was really struggling to do.

So, I made a decision early on that I was going to be high-functioning. I was going to return to work, I was going to be the best parent I could be, and I was being those things, but it was coming at the cost of really significant cognitive fatigue. By about five o'clock every day I truly had no emotional resilience left. My brain really was in shutdown point. You know, when you're living like that, life isn't very pleasurable.

Chris: It is clearly a very big impact, but it also seems to be one that affects a lot of stroke survivors. Susan, if I could ask you then, do we know why people have these sort of problems that Karen's been describing?

Karen: Yes we do. Yes, there's a few things going on. There are a lot of senses that we use to navigate our environment and to know where we are in space and what we're doing and what we're touching and what we're seeing and what we're hearing obviously.

And now, in this case we're talking about the senses of the body, there's one basic one that everybody knows about. We know what we're touching through these little pressure detectors under our skin. And our brain normally picks up these messages and interprets them.

Now, in a stroke, those messages are being detected by the little pressure sensors in the skin, but the part of the brain that appreciates them, and literally makes sense of these messages coming into the brain, is damaged. Now, like anything with stroke, that part of the brain could be actually quite dead, those neurons might have all died as part of the stroke. They might have some diminished function, so then we'll get a sort of faulty message, so some weird sort of numbness.

Even the pins and needles that people describe, is just a misinterpretation in a way, almost like a static-y phone line. The messages just aren't quite getting through properly. But it's at the brain end in the case of stroke. Obviously, you can get pins and needles from other sorts of things like problems in the nerves and the body itself, but in this instance it's the brain that's the issue.

And then the other thing that Karen described was that, almost like she would forget about her arm. That can just be the sensory loss, like you just literally don't feel it anymore, but then there's an even more difficult sort of phenomenon to understand, is that you can actually forget that a body part is yours.

So we also have this very hidden sense, called a sense of ownership. We know that we've got body parts and that they belong to us. And in a very bizarre way in stroke, people can lose that sense of body parts. They can even lose a sense of space like the left side of space or something. So these are more perceptual disorders, they, as Karen described really beautifully, they are incredibly, well, discombobulating, because they're hidden. Nobody knows. Who knew that you knew that you had an arm, and now you don’t know that you've got an arm, but nobody knows it. So they're incredibly difficult stroke sequelae to deal with.

Chris: Okay. What about proprioception? Is that related as well? I guess if we're gonna talk about proprioception, we should get you to explain what that is.

Karen: Yes. Sure. Now, this is one of my favourite senses, actually. It's complex. So there's quite a few different little receptors in our body, in our tissues, that tell us where we are in space at any particular time, or they tell us, if you shut your eyes and you let your hand dangle, you can feel that your fingers are facing down and that your wrist is bent without looking at it. So that sense of the position in space. And then also if we shut our eyes and we move our arm in a circle, we know it's a circle and we know how fast it is and we know the direction. That's all proprioception. The sense of position and motion in space.

And it's quite a remarkable thing. It's probably not entirely well understood, but the little detectors for this that we use mostly are fantastic little kind of strain gauges in the muscles themselves, within the muscle fibres, or in between the muscle fibres of the muscle. So, if you can't move very well, then you can't sense movement very well. So it's a bit of a double-edged sword for people who've got movement difficulties after stroke. Now there are little receptors in the soft tissues of the joints, the ligaments, but they tend to be more of a warning receptor. So if your joint stretches too far you get this sense of, 'Oh, I know where I am now, I’d better not go any further.' So they're the main ones that we know about, that we understand the best, but there's other aspects to proprioception. But it is one of those amazing senses that, again, most people don't stop to think or be aware that they've even got it. So when you lose it, it's sort of hidden.

Chris: I feel a little bit like I'm just rattling off a list of different senses here, but we did put out a call for questions for this podcast. We had some people talking about things like taste and smell as well. Are they also related to these touch and other senses?

Karen: Well, they're similar in that they've got little receptors, these little detectors in the body itself that pick up signals from the environment, and then send those signals to the brain and then the brain interprets. And absolutely, taste, smell, vision, hearing, all of them – so, obviously the eyes are the little detectors for vision, the ears are for hearing, and then taste is in the tongue partly, and smell in the nose. And, again, if people have problems with these after stroke, it's because the different parts of the brain that receive these signals and then make sense of them, either aren't working at all, in very drastic cases, or working a little bit and actually often coming to the wrong conclusion. So people can miss-smell things or miss-see things, for example.

So all of the senses follow that kind of path where they're picking up signals, sending them to the brain, but depending on where the stroke is, which part of the brain's affected, then our ability to actually make use of those incoming signals can be really impaired.

Chris: Now, another question though that we were asked, a couple of people asked about, was, well, they described changes in their sensation in the months or years after their stroke, both in the intensity, like pins and needles coming and going, and the location of where they feel it on their body. Is that a common occurrence? And why would that happen?

Susan: A lot of these long term problems are not actually well understood, but I do hear this a lot as a clinician as well, and I've learnt a lot listening to my clients over the years about these strange long term things, and as best as we know, this is really an example of neuroplasticity. So I think, you know in the press, neuroplasticity has kind of got this holy image that it's all marvellous and it's all recovering the brain's ability to change. Well yes, the brain can change, but it can change in a way that's not particularly helpful.

So, to the best of our knowledge at the moment, these longer term changes can be viewed as faulty rewiring, so we're hoping for the neuroplastic changes, the positive rewiring, these sorts of changes can be a negative rewiring, if you like. Now, I do have a bit of a theory that, as we know with movement it's a bit of use or lose it, and I do feel that probably with sensation, there's a bit of an element of that, that if people aren't able to use their senses well, then there can be problems longer term as a secondary thing. But, basically, the short answer is, the best we know, faulty rewiring as opposed to positive.

Chris: Okay. Sounds like that leads well into a discussion about rehabilitation, but there’s other thing I wanted to ask both you and Karen about before that, which is, I suppose, that when we're talking about some of these sensory issues it sounds like we're talking about numbness and loss of the sense, but then there comes with it an oversensitivity as well, where like a touch can be painful and then lead into sensory overload, which I know that you talked about, Karen. Can you describe what sensory overload is like in your experience?

Karen: Yeah, sure. Thanks, Chris. If I could just follow on from what Susan was saying, my experience is that going along with the imperfect understanding of the brain, of the messages that it's receiving, comes tactile defensiveness, which… It's painful for things to be in contact with your skin, and your brain is in almost constant fight or flight, and also going on along with that is 24/7 neuropathic pain through the whole left side of my body. So, for me it feels like all of my muscles are really, really big, thick elastic bands that are being pulled as tight as someone can possibly pull them all of the time, and as I fatigue, those things become a lot more pronounced, to the point that really I'm in so much pain, I really can't function.

So to comment on sensory overload or sensory overstimulation, it's most commonly understood in children with autism spectrum disorders. So, what it's like for me is my brain doesn't filter information in the environment around me. So movement, multiple conversations or noise sources, bright lights, all of those things instead of my brain just putting them to the background and focusing on the thing I need to focus on, my brain focuses on all of it, to the point that I'm actually in distress and, again, my brain has just taken in so much information it's like it's short circuiting, and again, that really ramps up the pain that I experience.

So it's one of the biggest challenges for me all day every day, how do I get through life where I'm wanting to and needing to earn an income, working in an open plan office, regularly being in quite long meetings where I'm really concentrating on things that lots of different people are saying, and the time when I'm not at work I'm around children and my children are now quite a bit older. They're now 12 and 10, but they still don't understand that they can't both talk to me at the same time, and they always do. And when they're not both talking to me at the same time they're fighting with one another.

So it impacts on my ability to take children into environments kids love: indoor heated swimming centres, shopping centres, Timezone, an adventure playground ... anything where there's lots and lots of kids and lots of movement is really quite difficult for me, and so we need to think of some strategies of how we manage that.

Chris: Susan, does that fit in with your experience?

Susan: Oh, absolutely. I think that's really, really, really so beautifully put, for not a very beautiful phenomenon. So, because we've got so many senses, as Karen described, the word 'overload' kind of gives it away. Our brain does something quite marvellous, it actually inhibits us noticing or paying attention to, or giving any weight to most of the senses that are coming from our body, coming from our little receptors. So this is a phenomenal job that goes on in the background all the time. So, actually what we've learnt to do is ignore them and we learn to pay attention to what is most useful.

Now that part of the functioning of the brain can be affected after stroke, and I can't put it any better than Karen, is that everything kind of overwhelms all of the different senses, then overwhelm rather than being purposeful and only select bits and pieces from each sense to get the whole picture, it is like the orchestra tuning up is how somebody once described it to me.

Karen's right, finding strategies to be in environments where there isn't so many different modes of sensory experience coming in, only going in those environments when you're really fresh so that your brain is at its best, and talking about it really sensibly as Karen's done with her children, to say, "I just can't cope.”

Interestingly, when you talk about this stuff, there's actually a lot of people who haven't got a stroke who have this and they kind of ignore it, but they wonder why being in public is so taxing for them. It's worthwhile having a conversation with almost anybody, 'cause there's a lot of people who have a version of this experience. That's, you could say, a sensory overload in a way, perceptual and cognitive overload, because it's the whole process where it's just too much.

If you want me to go back to the tactile defensiveness stuff, yes this sort of oversensitivity is relatively common after stroke as well. And it could be partly a miswiring, and it often is related to pain as Karen said, what we call neuropathic pain, which is where there's not tissue damage, which is picked up by a different set of little receptors called nociceptors, there's nothing actually wrong with the muscles as such, but the signals that are going to the brain from the muscles are being interpreted as pain, even though there isn't anything wrong with the muscles.

And this, again, you don't have to have a stroke to have this kind of pain. There's lots of other syndromes that have it, but it is a particularly nasty sort of pain. Again, it's a misperception, but that sounds like just a simple thing. It's not. It's like a phantom pain. It's very insidious and it's very tiring.

With the miswiring as well, Karen also talked about something where, if she just gets a normal touch, like a piece of cotton wool on the skin will feel like it's a painful stimulus. That's called allodynia, and it's where the brain is completely misinterpreting sensation. So there's a complete kind of miswiring and we do see that a fair bit with people with certain kinds of pain syndromes after stroke, but also after other injuries as well.

And this rewiring can be quite bizarre. I remember in one of our sensory trials, we tested the touch sensation of a man on his feet, and he consistently, if we touched him on his right big toe, he consistently always felt it on his middle left toe. Now it wasn't a problem with left or right, he just had this complete miswiring of appreciation of even where the touch was from one side to the other, from his more stroke-affected side to the other.

So, the capacity for miswiring is quite extraordinary.

Announcer: This is the EnableMe Podcast, enableme.org.au

 People call StrokeLine for many different reasons during their recovery. Some call from their hospital bed, others might call years down the track. The stroke journey can be a rollercoaster, and no matter what stage you are in, we're here to help make that ride a little smoother.

StrokeLine is staffed by a team of qualified health professionals who have the latest evidence-based information. A big part of what the StrokeLine team does is help to break the problem down, providing information on different treatment options, resources and services, and working out the best option for you.

So whether you are setting new goals to get back to driving or work, or trying to find the approach to communication that works for you, or perhaps a carer finding it a bit tough, StrokeLine is there for you. Call 1800 STROKE. That's 1800 787 653.

Chris: I think it's probably a good point, I suppose, when we’re talking about issues of neuropathic pain and those kind of things, to remind people that we have discussed some of these topics in our previous podcasts. If you go onto the EnableMe website you can find our podcast on pain, we talked quite a bit at length about this. We’ve also got podcasts on fatigue and spasticity, which I know often comes up in this sort of area.

But I suppose now, because we are talking specifically about some of these other sensory issues, and it sounds like it's what you're saying, Susan, which is a matter of guiding the rewiring of the brain. So, what kind of things can people do in terms of rehabilitation for sensory issues?

Susan: Yeah, you're right. Guiding the rewiring is really a great way to put it. So we want it to be purposeful. And to the best of our knowledge at the moment, it's like, you had a podcast about neuroplasticity and you know some of the guiding principles around the use-it-or-lose-it, and it has to be very task-specific, it that has to be meaningful to the person so that the brain is more likely to wire around meaning.

So, the current evidence of sensory retraining is literally around that. There's some great work done by Leeanne Carey in Australia and others internationally about training the specific senses. So just like you might have specific training to compensate for visual loss, and you know that mobility instructors and OTs and that, and so forth, when you’re working with walking will help train you to develop some compensations around that.

With tactile loss, there's some good evidence that that can be relearned. It has all those other criteria though, you need to practise a lot, it needs to be accurate, it needs to be meaningful and purposeful, so it needs to make sense in other words. So the sort of protocols of sensory retraining will use everyday objects and practise everyday tasks, but then instead of you practising the movement as such, you're actually practising paying attention to very specific, controlled sensory inputs. So it requires a fair bit of concentration, but as I said, the evidence is emerging really well.

We've done some studies too about training proprioception, and again there’s the same kind of criteria. It needs to be fairly purposeful, it needs to be intense, the person needs to be fully engaged, but we're quietly confident that this is one of the newer frontiers of rehabilitation. People will laugh when I say newer, because it's actually been around for a long time. But I think because it is so intensive, it hasn't maybe received the attention that it deserves in the rehab settings sometimes.

My other point about why it's so important is, obviously there's a safety issue about being able to appreciate touch, but if you think about the movement senses, and we have a feedback loop in our body, we do a movement, we get immediate feedback about how good that movement was and we correct and we modify and we get better. And that's learning.

If we don't have correct feedback, it's very difficult to get learning. It's a bit like, you remember when you were a student but the teacher never told you how you were getting on? It's much harder to learn, because you don't know what's right and what's wrong or what's better or what's worse. So we're particularly interested in retraining sensation to actually improve the quality of movement, as well as the safety of people in their environment.

Chris: Okay. Now, you mentioned Leeanne Carey's work there, which, I believe, is the SENSe programme that she developed…

Susan: Yes.

Chris: ... Karen, you were one of the first people to go through that, is that correct?

Karen: Yes. So, Chris, I was really fortunate, while I was a patient in a rehabilitation hospital that my physiotherapist had done her PhD under Leeanne Carey. She'd done her PhD on how sensory loss impacts on movement. So the therapy was primarily physical therapy, making sure I got good movement and effective movement in my arm and hand, but at least she had some knowledge about the sensory aspects of that.

But I was discharged from hospital with the hospital having really offered me everything that they could, and the sensory loss was still having a really significant impact on my life and the lives of my children. And my physiotherapist had talked to me about the work that Leeanne Carey does at the Florey Neuroscience Institutes. I'm extraordinarily fortunate that I live 10 minutes away from the Heidelberg campus of the Melbourne Brain Centre, and also fortunate that I'm a reasonably confident person.

So I Google searched Dr Leeanne Carey and it's like, here's this really, really important brain researcher, and emailed her and said, "Hi, Leeanne, I'm Karen and my brain's really interesting, and I'd like to come and be your guinea pig please.”

I participated in a couple of rounds of the research that underpins the SENSe retraining program that many therapists are now trained in, and it's offered in some rehabilitation hospitals. So, as Susan said, it requires an incredible amount of concentration. It's absolutely exhausting to try and make sense of the really fine grain differences in different things you might be touching when you're struggling to understand that you're touching them at all. So it's really exhausting.

So for me what that involved, in a research setting, was blocks of six weeks of therapy with MRI scans before, during and afterwards to measure brain change. And what those MRI scans showed is that when images were being taken of my brain while my fingers were moving over different surfaces, my whole brain was firing off, trying to find the information it was looking for. And that whole brain firing off, trying to make sense of things, was part of what was contributing to really significant cognitive fatigue. And what happened over the course of the therapy is that the brain activation really, really, really settled down in one place in my brain, and it settled down right next to the site of my stroke. So, it was therapy in proprioception, so finger, wrist and elbow position, and also retraining sense of touch and then applying those two things in my selected everyday tasks. So it was goal-orientated.

Chris: Did that work a lot for you? Did it improve your sensory problems?

Karen: Oh, absolutely. I mean, I still manage imperfect sense of touch, but, I mean, just to let you know the sorts of things that I worked on, when I was discharged from hospital, I had reasonably long hair and I couldn't tie up my own hair in just a basic ponytail. So one of the things that I worked on in my SENSe therapy was an ability to plait my pre-school age daughter's hair.

So she'd reached the age where she wanted Mummy to do pretty girly things to her hair and I couldn't actually even tie her hair in a ponytail and she wanted me to plait her hair. So, over the course of the therapy I can now successfully plait her hair. It's not something that we do in a hurry on a school morning, but with a quiet environment and as Susan's saying, when I'm fresh and with time and quiet, yes I can plait her hair.

But not only that, I did a lot of craft before my stroke, and as I was going through a lot of the grieving impacts of my stroke, I really turned to craft as a meditative thing that re-centred me in my own body and helped me just find quiet in all of that sensory overload and grieving.

And one of the things that I wanted to be able to do was to be able to crochet again. And that's an incredibly complex task if you don't have any feeling or understanding of where your fingers are and what they're doing, but with persistence I now not only crochet, but I crochet blankets. So it's not like I'm struggling to crotchet a basic square; I crotchet rugs. So, I really have very high order functioning. It's still hard work and it's still exhausting, but there's really not very much that I want to be able to do with my hands now that I can't.

Chris: Okay. That sounds like it's quite a bit of improvement there.

Susan, what else, do you have any other, before we finish up, any other recommendations for treatment for sensory issues?

Susan: I think just to reiterate that we're really working, there's a lot of us working hard to get this to people's attention – and there's a bit of a pun in there, bringing senses to attention – with the sort of push on rehab is to get people moving and out and quickly. And I think Karen's example of the things that give us pleasure in life, if we can pay attention to those things in rehab, and these really subtle impairments that can make them just too difficult to try. 

Karen's obviously got an extraordinary amount of motivation and persistence, and for people listening to the podcast, that would be my message, is if you want to improve these things, talk to your therapist and think about your own motivation and your ability to persist because, with any of these kinds of retraining protocols and schedules, what you bring to the table is absolutely paramount and these sort of marvellous stories that Karen's told us. I still can't plait, Karen, so I think I might have come to you. Fortunately, I didn't have daughters. That's probably a good thing. But they’re terrific tales of encouragement, but it's qualified by hard work.

Chris: Fantastic. Karen, do you have any other final advice for stroke survivors?

Karen: Yeah. My advice for stroke survivors would be, pay attention to your emotional recovery. Find the things in life that bring you joy and bring you peace, and connect with other stroke survivors and understand, the complex battle that you're having with yourself, you're not alone. Share advice and tips and support with other survivors, and find the strategies that help you live the best life that you can.

Chris: Well thank you both, Karen and Susan, for sharing your knowledge and experience on this fairly complex topic. So that was stroke survivor Karen Bayly and Professor Susan Hillier.

Announcer: You're listening to the EnableMe Podcast, enableme.org.au.

If you are a family member or friend of someone that has had a stroke, you know that it's just the start of a long journey to reclaim their life. As one of Australia's biggest killers and the leading cause of adult disability, we still have a long way to go until we can say we have beaten it.

At the Stroke Foundation, we draw our inspiration from the determination and persistence of stroke survivors. And that's why we work every day to prevent, treat and beat stroke.

There are many ways you can join us to fight stroke, including: volunteering your time; telling your story for us to share with the media; speaking up and approaching your local member of parliament with our advocacy team; getting your workplace or community group behind an event like National Stroke Week or Stride4stroke; running a fundraiser, donating or leaving a lasting gift in your will; or just by sharing the F.A.S.T. message with the people around you, so all Australians will know how to recognise a stroke and act fast.

Join the Fight Stroke team. Find out more at strokefoundation.org.au

Chris: Finally today we have Kirsty Cole. Kirsty is an occupational therapist, and she can also be heard on the Stroke Foundation's StrokeLine. Thanks again for coming in, Kirsty.

Kirsty: Thanks, Chris.

Chris: Now, I mentioned there that you're an occupational therapist, sorry I should say an OT, people might be familiar with that terminology. What is an OT's role in helping people with sensory issues?

Kirsty: Well Chris, we start by looking at how the sensory issue is impacting on the person's everyday activities. So if the person has experienced sensory loss, we begin by looking at strategies to improve their safety during tasks, like cooking and personal care.

This brings me to the other part of the OT role, which is around sensory retraining. So we've already heard quite a bit from Karen and Susan about sensory retraining and what it involves, and so basically as OTs we're working with the stroke survivor to train the brain to regain that sense of touch. So the person works at identifying different textures and objects to then use them in their daily activities.

Chris: So that's similar to what Karen was talking about, that she retrained her senses by doing practical things like the crochet and plaiting her daughter's hair.

Kirsty: Mmm, yes. So, repetition is key, as is doing meaningful tasks. We also heard about proprioception, so as therapists we work with the person on their ability to know where their arm and hand is in space without looking, and professor Carey's SENSe approach, which Karen was talking about, looks at these types of sensory retraining that I've mentioned.

A therapist might also use thermal stimulation using hot and cold, they might use electrical stimulation on the affected side, and we often see improvement in proprioception when we're using constraint induced movement therapy as well. So, as you've heard from Karen and Susan, movement and sensation are quite closely linked, and as movement improves sensation does as well, because the repetitions of movement improve sensation at the same time. So the idea is, if you feel something over and over again, the part of the brain that listens to that feeling expands as per the rules of neuroplasticity that we were talking about.

Chris: Okay, now you mentioned at the start there that it's helping people not hurt themselves when they have sensory issues, I suppose this relates to what Karen was also talking about, how she would get her arm stuck on the door for instance. What can people do if they have ongoing issues, to try to make their home safe or to stop injuring themselves?

Kirsty: There's lots of different strategies, and I will go through some of the more common ones. And it can be helpful to talk to your therapist about what strategies might suit your particular situation, because those protective sensations, being able to feel pain and really hot temperatures, are really important, because if you're not able to immediately identify something's hot, then you're at risk of burning yourself when using the stove or getting into the shower. So, a strategy for that might be testing the water before you go to put your hand in a sink full of hot water, with the hand where the sensation is intact.

Also, where sensation is lost or diminished, your skin is at high risk of pressure injury as well, so in order to manage pressure injuries it's really important to be working with your health professionals.

Chris: What do you mean by pressure injuries?

Kirsty: Oh, things like feeling sharp sensations or prolonged pressure on the hand, so an injury from carrying a bag with a handle that's really narrow or might be cutting into your skin, so that prolonged pressure can cause injury, and if you're not aware that that's uncomfortable and causing pain then you might not see the skin becoming red. And some other common ways to avoid injury, say in the kitchen, is being careful with using metal utensils when you're cooking, because if you leave that in a pot, obviously it can heat up.

Then elsewhere in the house, you can try using enlarged handles on drawers or keys, on suitcases like I was talking about, to more evenly distribute that pressure on your hand.

It's also important to make sure that when you're moving from, say, a wheelchair to your bed or your chair, to look after that arm to make sure that you know where it is, because if you've not got the sensation and your arm drops down to the side, you can risk injuring your shoulders, or your skin can get caught on something as you're performing that movement from one seat to the other.

Chris: Those are some nice practical suggestions there. What else would be your top tips for stroke survivors dealing with sensory issues?

Kirsty: I guess the main thing is, the starting point would be to talk to a doctor about the sensation changes you've experienced post-stroke, and whether referral to allied health would be beneficial.

It can be helpful to find an OT or physio who are specialised in neurological rehabilitation, and there's directories of OTs and physios on the Physio Association website and the OT Australia website, and you can actually search by specialty. You can ask your therapist about SENSe training and some of the other therapies that we mentioned and whether it would be beneficial for you.

Try to use your affected arm as much as possible and try to keep your arm injury-free by getting help with the riskier activities. And of course, if you've got any questions about stroke treatment or recovery and support, you can give us a call on StrokeLine, which is 1800 787 653.

Chris: I should mention there, the SENSe training you've mentioned, that is the program developed by Leeanne Carey…

Kirsty: Yes.

Chris: ... and people can't access it directly through her laboratory, but therapists are trained in that program Isn't that correct?

Kirsty: Yes.

Chris: And that is something that people can look up.

Thank you for that, Kirsty. Remember now, if you want to speak to a health professional like Kirsty, you can call StrokeLine on 1800 787 653, that is 1800 STROKE, or you can ask a question through EnableMe and get a response from health professionals and other stroke survivors.

And that's all we had time for today. If you like what you've heard, please give us a good rating and review on iTunes, as that helps other people to find our podcast. Thank you once again to our guests, Karen Bayly, Susan Hillier and Kirsty Cole.

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 enableme.org.au. It's free to sign up and you can talk with thousands of other stroke survivors, carers and supporters. You can also suggest a topic or provide feedback on this podcast.

EnableMe has qualified 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 healthcare professionals.

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 facebook.com/studiofour99.

This EnableMe podcast series is produced by the Stroke Foundation in Australia, working to prevent, treat and beat stroke, strokefoundation.org.au.