Hand, arm and shoulder

8 June 2017

The majority of stroke survivors will have problems with their upper limbs at some point – that's the arm, shoulder and hand. These problems include weakness, trouble coordinating movements, changes in muscle tone, subluxation, contracture, swelling, and reduced or increased sensation. These make a big difference in your daily life.

In this podcast, we talk about these issues with arms and hands and shoulders, and what you can do for recovery.

Our guests are:  

  • Dr Annie McCluskey, an occupational therapist, educator and researcher with over 30 years' experience in stroke and brain injury rehabilitation.
  • Rebecca Schmidt-Lachlan, a young stroke survivor and member of the Stroke Foundation's Consumer Council.
  • Tahnee Winks, a physiotherapist from the Stroke Foundation's Follow Up service.

On Tuesday 4 July 2017 we held an online group chat with the guests from this podcast. Download a transcript of the group chat.

 

 

Podcast transcript

Download the transcript

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

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

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

Chris: The majority of stroke survivors will have problems at some point with their upper limbs. That's the arm, shoulder, and hand. Now the kinds of problems you can have with upper limbs include weakness, trouble coordinating movements, changes in muscle tone, subluxation, contracture, swelling, and reduced or increased sensation, and these make a big difference in your daily life.

In this podcast, we're going to talk about these issues with arms and hands and shoulders, and what you can do for recovery. We'll be speaking to occupational therapist, educator, and researcher Annie McCluskey about what the evidence says about upper limb problems. And we'll talk to physiotherapist Tahnee Winks from the Stroke Foundation about where to start.

Our first guest is stroke survivor Rebecca Schmidt-Lachlan. Rebecca was an active, fit 26-year-old when she had a blood clot in her brain stem. In the years since then, she's come a long way, and she now represents the interests of other stroke survivors as a member of the Stroke Foundation's Consumer Council, as well as advocating for improved access at the Unanderra Train Station. Thanks for coming into the studio, Rebecca.

Rebecca: Thank you.

Chris: Now, I'll start with my usual question, which is could you please tell us your stroke story?

Rebecca: Mine was a very devastating story to me, I think. I lost everything overnight. And basically, I thought I had food poisoning and it turned out to be a stroke, and they told my parents I probably wouldn't make it through the night.

Then when I woke up I was told I would have locked-in syndrome, which meant my movement that I had at the time was from the neck-down, and that was going to be all that was left. I did not believe it, and I was a bit defiant, and I think that might have helped me to get as good with it as I am now.

But it took a long progression of having to do lots and lots of rehab, and things that I thought were normal, everyone was really excited when I could move a toe or something like that. And I couldn't understand the significance of it. But reflecting on it later, I kind of think, "Oh, wow. I did do that." So I think it's from something that was such a big impact, I feel I've done a lot to get as good as I am today.

Chris: For you it must've been a big impact all over your whole body, the effects of the stroke.

Rebecca: Well, pretty much I had to learn everything again. I had to learn to speak again. My speaking was nowhere near this level within the first year. I had to learn how to walk again. I couldn't walk. I had to go through the driving test so I that I could be able to drive again. I had to try and get myself back into the workforce.

Everything that I thought as a young, fit person that I thought I was, I wanted to get as much of that back so that I could have a quality of life and try and pick up where I left off.

So I found a lot of physio, a lot of OT, and a lot of speech therapy and case counselling and things like ... I had to do a lot of that. Probably every week or so I'd ... Daily I would do those things, but the case meetings probably every week or so.

Chris: We're here today, I guess, mostly talking about upper limbs. And you have particular effects on your arm. And that's your right arm, isn't it, that was affected more?

Rebecca: Yeah, yeah. The right hemiplegia.

Chris: Okay. And so what was the effects on your arm after the stroke, and how is it now?

Rebecca: I found it improved quite a fair bit, where I could rest it just on my legs by itself within the time I was in the hospital. But then at the end of the hospital stay they recommended me to have a Botox injection, which would decrease the muscle tone in the ones that were too strong, and allow the smaller muscles to take over and let my arm move freely. So now I can actually straighten out my arm.

My fingers are still a little bit robotic but that's okay. But I'm glad I have the same, pretty much, range as most people. I'm happy with that.

Chris: Okay. So you mentioned getting injections for the high tone, the spasticity, in your arm. What about getting other function back? What kind of rehabilitation did you need to do for that?

Rebecca: Well generally I did that with the OT, and that was mainly things like learning to lift up the right arm so I could use it to put washing on the line. A lot of things where I had to raise my arm, because the muscle tone just wasn't there in my tricep to do that lift, still to a certain point. It only goes so far and then it wants to stop. But I'm able to try and manoeuvre and push it so it will go to where I want it to go.

But it was very restrictive for a long time, and I found, just repetitive tasks and trying to ... Knowing what you wanted to do and not giving up until you got to that point was the driving factor in making my arm as good as it is today.

Chris: Okay. And are you still working on things like your hand function, and that sort of stuff?

Rebecca: Generally I do that at home. I don't actually go to a physiotherapist anymore. But when I do I try and use what I was taught in hand therapy class, which is, basically, use your right hand on the task that you would use your left hand with. So things like remote controls and things like ... And trying to improve the dexterity and movement in that hand.

Chris: Okay. And is it things like sensation and stuff, like the feeling of touch, that you're also trying to get back? Or is it mostly just about the dexterity?

Rebecca: It's mostly just about the dexterity. I can feel pretty good in my arm most of the time, but generally, if I hurt myself quite bad then it doesn't register as much so that’s as serious as it is. But I can generally feel most of my arm at the moment.

Chris: Okay. And so how do you think you're doing? Do you think you'll gradually get more and more movement back?

Rebecca: I think that is really up to me and how much I want to get on top of it and try and be able to use it properly as well as I can use the left one. And that's just a matter of going through repetitive tasks and trying to increase the tone and movement through those fingers.

Chris: Okay. So then, I guess, from that, what sort of advice would you give other people who've got issues with their arms and hands and shoulders and things?

Rebecca: Well, I've been speaking to a StrokeSafe member that's based in Sydney as well, and he's a hand therapist. He basically, that's his field. And he told me that it's really up to us. How much you get out of it is how much you put in, so I'm happy to keep going as long as I have to go to get to where I need to be.

Chris: Okay. And where is that that you hope to get to?

Rebecca: I'm hoping that one day it won't be so hard to move my fingers around. They'll be a bit more free and not so tensed up.

Chris: Brilliant. Well, good luck with that, Rebecca. And thank you again for coming in, and good luck, also, with all your campaign work. I hope you get the goals you're after there, as well.

Rebecca: Okay, excellent. Thank you very much for inviting me.

Chris: That was stroke survivor Rebecca Schmidt-Lachlan.

Announcer: When you, or someone you love, has a stroke, you are instantly bombarded with a whole lot of medical terms, and it's pretty hard to take them all in. It's like learning a whole new language. To help you, we've created Strokesaurus, a glossary of stroke terms. It's an A to Z guide of the language used around stroke. From atrial fibrillation to Webster pack. It explains key terms in simple language. You can access it on your computer, smart phone, or tablet, at enableme.org.au.

Chris: Our next guest is Dr Annie McCluskey. Annie is an occupational therapist with over 30 years’ experience in stroke and brain injury rehabilitation. She is an honorary senior lecturer at the University of Sydney, and Adjunct Associate Professor at James Cook University. She is also a member of the Stroke Foundation's clinical council, and has been heavily involved in updating the clinical guidelines for stroke management. And she can often be found on EnableMe commenting on issues with upper limbs. Thanks for joining us, Annie, we're very lucky to have you.

Annie: Thank you.

Chris: Now, we put out a call for questions on this topic to our community and we've got a huge response. Now many people seem to struggle with regaining function in their arm and hand, even after they've recovered with their walking. Is this common, and if so, do we know why?

Annie:  Yeah, if you actually look at the incidence or the prevalence of upper limb problems, probably about 70% of people who've had a stroke have long-term difficulties with their arm use, and in that first week after the stroke, about 30-45% of people will have a very severe weakness. Almost no movement or little movement in their arm.

And we think the reason why people have more difficulty with their arm than with their leg is that you have to be able to stand to transfer to get on the toilet, to get in and out of bed. So there’s demand being placed on your affected leg and the muscles in your leg every day when you're doing things on the ward after you've had a stroke, and you can't really manage if you can't stand on that leg, as well.

Whereas, with your arm you can get by with one arm. And the other thing is that the arm, the hand in particular, and the fingers and the fingertips, are quite complex. There's a large area of our brain associated with that. So we think maybe that's why it takes longer for the arm to recover and it's more complex, certainly, for us to train as therapists.

Chris: Given your role ... We've talked about the updated clinical guidelines and they are to be released later this year, of course. But what can you tell us now about what the evidence shows in terms of upper limb recovery?

Annie:  You'll see in the guidelines when they come out, that there are recommendations for people who've got severe weakness, people who've got moderate and mild weakness. And so when I talk about severe impairment or weakness, that's people who've either got no movement in their arm, who can't lift it up off their lap onto the table, or perhaps can lift their shoulder, at least their arm up, but they haven't got any movement in their fingers and their hand.

And for that, the guidelines recommend that therapists should offer people electrical stimulation, robotics – which, certainly, not a lot of public health services have at this point in time, but there is evidence robotics can help get people's arm moving – and what's known as task-specific training where a therapist will target a specific muscle in such as the muscles in front of the shoulder, or the muscles inside the thumb, and try to get that particular muscle to contract once or twice or multiple times.

So that's, really, all we have at the level of somebody who has a very severe weakness or has no movement in their arm. Electrical stimulation, specific training targeted at individual muscles and then trying to get all those muscles to work together, and where robotics are available they're obviously an adjunct, but I should say robotics aren't the be-all and end-all. That they need a therapist to be able to operate them. They're often only available at certain times in hospitals where they are available. So that's one limitation of them.

When we move to people who've got, probably the majority of people who have moderate recovery, they've got some movement but can't use their arm functionally, we can then add in ... As well as those three things we can add in mirror therapy, mental practice, and use of video games and interactive games like the Wii to help drive some movement in the arm.

And then if we move down to somebody who's got a mild weakness, and that might be somebody who may only be in hospital for a short time. They can use their arm, they can hold objects, but may have difficulty with cutlery and writing. That's the kind of people where constraint-induced movement therapy might be offered and could be useful.

Chris: Okay. Can you just explain what constraint-induced movement therapy is?

Annie: Yes, it's a therapy that's offered as an intensive block, usually for three to four hours a day for two weeks. Mostly it's supervised by a therapist, an OT or occupational therapist or physiotherapist, and the person who's practising, who's receiving the therapy will be getting help to do practice – lots of practice – with their arm and their hand.

Their good hand will be constrained, will be restricted inside some kind of a glove or a mitt. Sometimes we just use an oven glove. And that's really to try and drive the brain to get messages down to the hand.

So the main features are intensive practice. Usually two, three, four hours a day, for two weeks. Mostly supervised. The affected arm is working a lot and the other arm is not used, it's constrained in some way. And the final part is there's homework given so people will have five to ten activities they have to try and do at home or on the ward overnight, to try and really get their arm working over that two-week period when they're doing the programme.

Chris: Okay. And so, you said it's not for everybody, this particular therapy.

Annie: It's only recommended for people who've got some wrist and finger movement. So people who can, perhaps, open one or two of their fingers – not necessarily easily, but they can open them – and they can extend their wrist back a bit.

So for someone who doesn't have any hand function, it's not the sort of therapy that would have the same benefits.

I should also mention, as I've said on the EnableMe website or list, that there are quite a few public services now in Australia that are starting to offer constraint therapy even if it's in a modified way, and there have always been private services in Australia that people can go and pay for a two-week block of constraint therapy.

Chris: Now, you did mention robotics as well. Now that sounds like something that's a fairly large bit of equipment that you might get in the hospital. What about for people at home, looking for devices that might be able to help them? There seem to be a lot of things on the market, and obviously buying something to help you with your problems is appealing, but are there devices that can help?

Annie: Well most of the robotics that are available commercially – and there's one called the Armeo, I forget the names of some of the other ones – but you're looking at $100,000 for most of them, and they're even beyond many of the health services. It's only when health services get a grant or a donation that we're often able to buy these items of equipment.

There are private clinics. There's certainly one in Melbourne I know of, and there may be some in Brisbane and Sydney, where people can go and use the equipment at those premises. With the technology, very often they're linked up to a computer and so somebody needs to be able to understand how to operate the computer as well as the actual physical equipment.

Other devices that are available that are less expensive, on the Stroke Foundation Facebook page there was a device which was made by a relative of a person who'd had a stroke, David Hill who's up the north-coast of New South Wales, which is a wooden device that allows the person's arm to slide in a trough and for the person to practise their shoulder movement. It's called the Strong Arm, and that device I've had made up at a couple of hospitals to use with people who are very weak. It allows them to start using their shoulder muscles a bit more easily.

Chris: What about things like the ... I think, like the Saebo-type gloves and arm material?

Annie: Yes, the SaeboFlex, as it's called, which is a bit like a glove with pieces of wire attached to it that needs to be fitted by an occupational therapist or a physiotherapist who's been trained in using the equipment. They cost about $2,500 per device, plus you've got to pay a therapist to help you with fitting them. They can certainly help to open people's fingers and allow them to practise grasping and releasing, if they have a bit of shoulder movement.

We have very little research on the effectiveness of the SaeboFlex at this point, so when I run workshops for clinicians and encourage them what to do and teach them what to do, at this point in time I don't cover the SaeboFlex because the research is still unclear, whether the cost and the amount of time spent fitting it benefits people.

But there are some public hospitals now, and out-patient services, that have a kit. They can buy a kit and fit a number of people with the SaeboFlex and lend it to them to take home for several weeks of practice. And that's certainly worthwhile, people trying if they have access to the SaeboFlex.

Chris: Now, I'm thinking also again about the video games and virtual reality that you mentioned. I understand this is something that you have researched yourself?

Annie: Yes, there's actually a recommendation within our guidelines that video games and virtual reality should be offered to people who've got mild to moderate arm impairment, because it does improve people's arm function when it's used in addition to the more traditional therapies.

And when it is used, it's recommended that people should have at least 15 hours total extra video games or virtual reality games on top of their traditional therapy. So that might happen in the ward. Sometimes people will be familiar with the Nintendo Wii games. They can be quite helpful for getting people’s arm to move in response to something on a screen. They can also be used at home. Many families will have the Nintendo Wii games at home. And sometimes in hospitals they're used on the ward at the weekends and in the evenings to help try and get people’s arm moving.

So they might follow something on the screen with their arm or their hand, but it's not for everybody. Not everybody engages with technology or likes using video games. They find them difficult to understand sometimes and they can break down. Sometimes the therapists don't necessarily always use them or know how to use them. So they can have limitations and that's why we say that they're used in addition to more traditional therapies, not instead of.

Other games that people can use, on an iPad there are quite a few games that would encourage and promote finger movement. So, things like the Fruit Ninja, games like that can be quite useful for promoting finger and hand movement, and can be used in a sitting position.

Chris: Well looking at a different aspect of it now, what about issues with sensation? We've had a few people report things like constant pins and needles in their arms. Is there anything that can be done for that?

Annie: Yeah, people do get unusual sensations coming down from their brain after they've had a stroke. Sometimes in fact, pins and needles can be a good thing, if it's the beginning of feeling starting to come back in fingers that were otherwise quite numb. Probably the bigger problem for most people is that they have no feeling in their fingers or their hand and they can't feel somebody touching them, can't feel cutlery when they pick it up, can't feel hot, can't feel cold, which makes it dangerous for their hand. So sometimes when pins and needles are coming back, that's a good sign. It's the beginning of some recovery in that sensation.

Some people can be hypersensitive to their hand, and I guess most of their rehabilitation is focused on trying to help people get more sensation back in their fingertips, particularly training them to be able to discriminate between different surfaces, different objects, different shapes, different weights.

And there's a very structured programme that therapists can learn to do, called the SENSe Programme that was developed by a therapist in Australia, Professor Leeanne Carey, which runs for 10 sessions and can be used at any time post-stroke with benefits for people's sensation. It doesn't target the pins and needles or the hypersensitivity, it more targets the loss of sensation in the fingers, and I would encourage people with stroke to ask the therapist about that particular programme if they're not receiving any dedicated sensory re-training either as an in-patient or as an out-patient.

Chris: All right, we did talk about some other complications like pain and spasticity, also, in some of our previous podcasts, so I'd recommend people listening to track those ones down if they want to find out more about those issues. One thing we haven't covered before, though, is shoulder subluxation. I get the impression that's fairly common too, is it?

Annie: Not as common as you would think. I can't remember from the guidelines what the proportion is, but certainly people who've got ... If you think about maybe 20, 30% of people having no movement in that first week after their stroke, that's when people are at risk of a subluxation because the weight of their arm can stretch some of the ligaments around the shoulder. And that's the critical time for trying to prevent stretching of ligaments around the joint.

Chris: So if I could just ask, it is the shoulder being pulled out of the joint. Is that what it is?

Annie: Yeah. It's really a dislocation. And once the ligaments of the muscles around the shoulder are stretched, they can't go back again. So it's helpful if we can help people to prevent that from happening in the first place by using things like a lap tray or a sling. We have very little research on the effectiveness or the benefits of using things like lap trays and slings, but it just is common sense that if you can take the weight of the arm away you're possibly going to help protect some of those ligaments.

But the critical thing in that first one to two weeks is trying to get the muscles around the shoulder to contract. So what we called active motor training. So we would want therapists who are seeing patients in hospital to be trying to get those muscles to work using things like electrical stimulation on the muscles at the front and the back of the shoulder.

Shoulder strapping is sometimes used to prevent subluxation, but there's no evidence that that actually does prevent it.

And then if somebody does develop a subluxation despite having slings, despite having a lap tray, it doesn't mean that they can't get recovery back and it doesn't mean that they can't get movement, even if they do have that stretching of the ligaments. Sometimes you can see people who've got a little bit of a gap, a little bit of a dip in their shoulder from the subluxation, but they can still lift their arm up on to the table and still use their arm again to a more or less degree.

Pain is a different thing. Shoulder pain can be a problem. Even when people can move their arm, strapping with tape has been shown to reduce pain and so therapists should offer that as an intervention. And steroid injections may also help to reduce pain, as well as botulinum toxin. That can sometimes reduce pain if somebody has prolonged pain that's stopping them from using their arm.

Chris: Now I guess if people are having problems, like coordination problems or movement problems with their arm, and in particular the loss of sensation, then they are at higher risk of injuring themselves and possibly making their arms worse. How should people try and avoid that?

Annie: Yeah, the main problem for people who get injuries is that they perhaps don't feel their hand when they're sitting on I, or they roll on it at night in bed, or they may burn it on the stove. If people don't have cognitive problems – thinking problems, attentional problems – then they can learn how to protect their hand more.

It might mean wearing a glove when they're out in the cold weather, or when they're doing things that it's likely to get injured with. It's often when people have a neglect and an inattention as well, that's when it's more problematic.

The other reason why sometimes people get injuries is they're just not using their arm, and so the more people can try to use their arm, the better. A sling can be useful for keeping the person's arm safer, but I would encourage people to not wear a sling all the time, because people want to be trying to get their arm to move as early as possible and keep on trying.

Chris: It sounds as though there is a certain extent of people having to, I guess, adjust and compensate for the lack of movement they have in their arm, as opposed to, I suppose ... Well, I suppose the question, should they be aiming for full recovery or is it a certain level of aim for the best you can and adjusting, and are there ways to adjust?

Annie: I've got no doubt that people should be aiming for as much full recovery as early as possible, and should always be aiming high. I get quite despondent, as I'm sure many stroke survivors do, when I hear somebody saying, "Don't worry about your arm. Just get back to walking." Because people do need to worry about their arm and be concerned about their arm, and the more that people start to try and get messages from their brain to their hand and their arm, the more likely they are to be able to get movement coming back. So I would be suggesting to people, have hope, aim high, don't listen to people in that early period after their stroke that say, "You won't get recovery back.”

There are certainly probably 20% of people with stroke who won't get recovery back in their hand and their arm even long-term. We don't know who those people are because some people can get recovery back three months, six months, afterwards, little by little. So we need to have ways of helping those people access therapy and rehabilitation even after they've left hospital, so that they can get some expert advice and help, and know what to do if they are a late-starter.

Chris: Well overall, though, that does sound like a fairly positive message, though. What is your main advice that you want to give stroke survivors, then?

Annie: I'd probably have a few key messages. One is that if people are going to improve their arm and their hand, they will certainly need to be actively involved in the practice. It's not about people doing things to their arm. Certainly good therapy advice can be important, but in the long-term, talking about people continuing to work on their arm for five to ten years as many people will do, they're going to have to find ways to build practice into their daily routine. It might be that they do their practice a bit like their exercises in the morning before or after breakfast, and then they have a review from time to time from a therapist to give some ways to progress and continue to do their practise.

There is a very useful book called Stronger After Stroke by an American that is very helpful and gives lots of good advice, by Peter Levine. It was published in 2008 and there's a new edition published in 2012 that people can order online for about $25. And it was a stroke survivor who suggested this book, Stronger After Stroke. It has good suggestions about motivation and keeping motivation going long-term. If you're keeping working on your recovery, not just on your arm, it has tips for different exercises. It has more accessible information about research. So that's a good resource for people to get if they want to continue working on their physical recovery.

Think about recovery as a long-term, life-long process if you really want to continue to work on your arm. And I acknowledge that not everybody will continue to want to work on their arm or their walking. Their focus might change to other things. Having goals is important and having a measurement of your progress every few months so that you can see that the effort's been worth it. And videos are very helpful for that, as well as some standardised measures that therapists can use.

I think we know that people have very variable access to experts, therapists, beyond hospital, and that's an on-going problem. But there are ways of having tele-rehabilitation if people want to try and make contact with people. If there's nobody locally they can try looking at tele-rehabilitation.

And just going back to practice, I would mention that not only is tele-rehab one way of helping to get some on-going input from therapists, but there's also ways of doing that in a group. So having a group of people who get together to do their practice in a semi-supervised environment, perhaps at a hospital, perhaps in a community centre.

And maybe finally one comment that I'd like to stress, and I hope this has come through, that weakness is the most common problem people comment on. That they can't get their muscles to work. They're not strong. They need to find ways to get the muscles to contract. Spasticity I know is a focus of one of your previous podcasts, but that's not typically what we hear patients and stroke survivors saying in the long-term. It's the fact they can't get their muscles to contract, that they're weak, is the biggest problem that, I think, we need to focus on in hospital and therapists need to focus on when they're offering suggestions. And you'll see that coming through in the guideline recommendations as well.

Chris: Great, well thank you very much, Annie. I look forward to seeing those guidelines when they're released, and I look forward to seeing more of you on EnableMe.

Annie: Okay, thank you.

Chris: That was Dr Annie McCluskey.

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Chris: Finally today we have physiotherapist Tahnee Winks, who works in the Stroke Foundation's Follow Up service. Thanks so much for joining us, Tahnee.

Tahnee: Thank you, Chris. It's nice to be here today.

Chris: In your calls to people, do you often encounter people are having issues with their arms, hands, and shoulders?

Tahnee: We do, actually. It's quite a common problem following stroke. But it's really variable and we certainly speak with people of all ages experiencing a variety of issues, actually, with their arms or hands or shoulders. And often once they're home it can actually become more apparent what task or activities including the arm or upper limbs are challenging, and what tasks are most important to them to be actually able to perform, or what's going to make their life easier, or help them get back to the activities they really want to get back to doing.

So, because the issues can vary significantly, so does the impact on peoples' functions and their ability to do the things that they want to do in their daily life. And it can also then impact on their independence as well. So I often find that for the time we contact people sometimes their goals have changed as well from maybe the early stages when they were in hospital, and it becomes more apparent as to how they want to participate in their general activities of daily living, or what their goals are to return to.

Chris: Yeah, it sounds like there is a complex range there that you've got. And I don't want to over-simplify things, but could you give us the top tips that you would give to people who are experiencing upper limb problems?

Tahnee: Because it is such a broad area, probably the top tips that we would recommend when we're talking to people is to certainly access help professionals who have experience in stroke and neurological rehab as a good starting point. So talking to a physiotherapist or an occupational therapist in particular can be helpful to look at how you can move and use your arm and look at what is there that you would like to work on, and allowing them to help assess and work with you and test for the strength and the movement quality, and the feeling that you do have in your arm. And with looking at working with you and looking at those things, they can work with you to find out what's the most important things for you and to develop a rehabilitation programme specific to your needs and goals.

Therapists can give guidance and advice of how to also care for your arm, especially if it is particularly weak or if you are experiencing any of the symptoms of pain. So knowing how to care for it and position it safely, and any family members or people involved in your care, giving them advice on what might work best for you and how to support the arm to try and reduce the risk of damage is also important.

But certainly there are lots of ways to access appropriate health professionals. So some people might have already been involved with a physiotherapist or an occupational therapist whilst in hospital, or been referred on to some on-going rehabilitation either as an out-patient or in the community. So through hospitals or rehabilitation units is one way to access allied health professionals, or certainly through community rehabilitation settings as well.

If you haven't had anybody involved with you at this point in time or at a point in time when you might need somebody, you can also talk to your GP and your GP can often also help with making referrals to allied health professionals.

So you can also access private practitioners as well. So there are professional bodies such as the Physio Association or Australian Physiotherapy Association and Occupational Therapy Australia, and there are certainly links to those associations on EnableMe to help people to know what services or what organisations are out there that you can access.

And certainly, if anybody has any trouble and would like to know more about how to access somebody to give them some guidance and advice on that area, then certainly the StrokeLine allied health professionals are there to help as well.

Another tip that we had was around goal setting. So it's really important that people determine what's important to them and that you can have your own goals about activities that you'd really like to be able to perform, or that maybe you're finding challenging but it’s important to you to keep working on. How to participate and keep up with the motivation to keep working hard to achieve those goals.

So some people might have a really big general goal, and sometimes the challenge is also to find the ways of working towards that bigger goal by setting smaller goals, and then you can see how you can achieve them along the way, which helps with motivation and keeps you going and keep you motivated to keep working hard. So therapists can certainly help you with goal setting, as well. And also finding ways to measure how you're going with your activities and with your goals can also prove really valuable and important in actually keeping motivated.

So therapists are also able to help you review your goals and help keep progressing them as your progress improves or as your needs change. But certainly over time people do find there are new things that they want to achieve or work towards, especially if they've achieved the goals that they've already set for themselves.  And again, if you need help with goal setting, which can be new for some people, there's also information on EnableMe about goal setting, as well.

As might have been mentioned earlier, trying to achieve recovery through neuroplasticity, which is a very, very important topic of research and certainly one that there's some evidence around, practice is very important, and repetition and lots of on-going practice is the key to driving recovery and neuroplasticity. And so having said that goal setting, I thought, was a key point, having goals that you're happy to work towards helps you to increase the motivation to practise at the right challenge point.

So making sure that things aren't too easy, but certainly not too difficult, is a key factor. So having things that are functional, that are useful, and purposeful to you, is a really good way of actually being motivated to continue to practise tasks over a long period of time. So if you haven't been able to start or get any advice around certain activities to keep practising, then therapists can certainly help work with you to come up with an individual programme to best meet your goals and your needs, and at the right challenge point or level for you to start with, and also help you to know ways of measuring how you're going with that, and knowing how to then progress as appropriate for you.

And even if some people don't have a lot of movement, there are other ways of actually practising and learning how to get advice to be able to incorporate your arm safely and comfortably, to be able to be used in certain ways, just in meaningful everyday activities or tasks and positioning is also a good way of actually incorporating that arm into meaningful practice. And also using mental practice as well can be really valuable.

A therapist like occupational therapist or physiotherapist can be beneficial in those ways to help you work towards your needs at your level, and to help keep you motivated to keep practising, because there is that potential for change. But you certainly need the specific repetitive task practice.

My last tip, Chris, I’d say, would probably be that sometimes progress can seem slow, and at different points in time people might benefit from having some ongoing peer support or social support around them. And also having balance so that it's important to also do what you enjoy and use your whole body as well. And certainly being connected to stroke support groups can be really valuable for a lot of people in knowing that there's other people that do share some similar experience or maybe have found things or know of things that can work.

But everybody's individual and certainly just knowing how to access different supports can be really valuable to people once they're home from hospital and have been living in the community and have aims of doing things that they would like to get back into and do, or even return to work for a lot of people. And so on EnableMe there's also links to or information about support groups, and there's also a way that people can communicate with each other in the community and share stories and information. And there's a lot of information on the EnableMe website about upper limb and hand management.

So they're probably my top tips at the moment, Chris.

Chris: Anything else you would like to add there, Tahnee?

Tahnee:  Probably my main key is that, certainly, because there is potential for change but it can be hard to see change quickly, so persistence is really important. The more opportunity for practise that specific and meaning for you, then the more opportunity there is for ongoing recovery.

Chris: Well, thank you very much, Tahnee, and thank you for giving a bit of a boost there to EnableMe for the support and information that is available there. Now if anyone wants to find out more and speak to someone about their issues, they can call StrokeLine and speak to a health professional. That is 1800 787 653 or 1800 STROKE.

And that goes for anyone who wants to know about their specific situation. As I said, we had a lot of questions submitted and we weren't able to cover them all. So please ring StrokeLine, or in a few weeks you'll have another chance to ask some questions when we hold our online group chat on upper limb issues. So if you're an EnableMe member you'll get a notification of when that will be taking place, and you can also, of course, through EnableMe ask your question and get a response from health professionals and other stroke survivors.

And that is it for our podcast today. If you like what you've heard, please give us a good rating and review on iTunes as that helps other people find our podcast. Thanks again to our guests Rebecca Schmidt-Lachlan, Annie McCluskey, and Tahnee Winks.

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 the series, at our website enableme.org.au.

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

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

The music in this podcast is “Signs” by stroke survivor Antonio Iannella and his band The Lion Tamers. It was recorded at Antonio's studio, which you can find out more about at www.studiofour99.org.au.  This EnableMe podcast series is produced by the national Stroke Foundation in Australia with the support of Allergan.

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

You might have muscle spasms or uncontrollable jerky movements in your arms or legs, changes in your posture, or unusual limb positions, and it can cause pain. It can be treated, though. Physiotherapy or occupational therapy can help you adapt and improve your movement. There are other possibilities, too, such as injections with botulinum toxin type-A, electrical stimulation of the muscles, electromyograph, or EMG bio feedback and muscle-relaxing medication.

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

Allergan is proud to bring you this EnableMe podcast.

Hand, arm and shoulder

8 June 2017

The majority of stroke survivors will have problems with their upper limbs at some point – that's the arm, shoulder and hand. These problems include weakness, trouble coordinating movements, changes in muscle tone, subluxation, contracture, swelling, and reduced or increased sensation. These make a big difference in your daily life.

In this podcast, we talk about these issues with arms and hands and shoulders, and what you can do for recovery.

Our guests are:  

  • Dr Annie McCluskey, an occupational therapist, educator and researcher with over 30 years' experience in stroke and brain injury rehabilitation.
  • Rebecca Schmidt-Lachlan, a young stroke survivor and member of the Stroke Foundation's Consumer Council.
  • Tahnee Winks, a physiotherapist from the Stroke Foundation's Follow Up service.

On Tuesday 4 July 2017 we held an online group chat with the guests from this podcast. Download a transcript of the group chat.

 

 

Podcast transcript

Download the transcript

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

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

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

Chris: The majority of stroke survivors will have problems at some point with their upper limbs. That's the arm, shoulder, and hand. Now the kinds of problems you can have with upper limbs include weakness, trouble coordinating movements, changes in muscle tone, subluxation, contracture, swelling, and reduced or increased sensation, and these make a big difference in your daily life.

In this podcast, we're going to talk about these issues with arms and hands and shoulders, and what you can do for recovery. We'll be speaking to occupational therapist, educator, and researcher Annie McCluskey about what the evidence says about upper limb problems. And we'll talk to physiotherapist Tahnee Winks from the Stroke Foundation about where to start.

Our first guest is stroke survivor Rebecca Schmidt-Lachlan. Rebecca was an active, fit 26-year-old when she had a blood clot in her brain stem. In the years since then, she's come a long way, and she now represents the interests of other stroke survivors as a member of the Stroke Foundation's Consumer Council, as well as advocating for improved access at the Unanderra Train Station. Thanks for coming into the studio, Rebecca.

Rebecca: Thank you.

Chris: Now, I'll start with my usual question, which is could you please tell us your stroke story?

Rebecca: Mine was a very devastating story to me, I think. I lost everything overnight. And basically, I thought I had food poisoning and it turned out to be a stroke, and they told my parents I probably wouldn't make it through the night.

Then when I woke up I was told I would have locked-in syndrome, which meant my movement that I had at the time was from the neck-down, and that was going to be all that was left. I did not believe it, and I was a bit defiant, and I think that might have helped me to get as good with it as I am now.

But it took a long progression of having to do lots and lots of rehab, and things that I thought were normal, everyone was really excited when I could move a toe or something like that. And I couldn't understand the significance of it. But reflecting on it later, I kind of think, "Oh, wow. I did do that." So I think it's from something that was such a big impact, I feel I've done a lot to get as good as I am today.

Chris: For you it must've been a big impact all over your whole body, the effects of the stroke.

Rebecca: Well, pretty much I had to learn everything again. I had to learn to speak again. My speaking was nowhere near this level within the first year. I had to learn how to walk again. I couldn't walk. I had to go through the driving test so I that I could be able to drive again. I had to try and get myself back into the workforce.

Everything that I thought as a young, fit person that I thought I was, I wanted to get as much of that back so that I could have a quality of life and try and pick up where I left off.

So I found a lot of physio, a lot of OT, and a lot of speech therapy and case counselling and things like ... I had to do a lot of that. Probably every week or so I'd ... Daily I would do those things, but the case meetings probably every week or so.

Chris: We're here today, I guess, mostly talking about upper limbs. And you have particular effects on your arm. And that's your right arm, isn't it, that was affected more?

Rebecca: Yeah, yeah. The right hemiplegia.

Chris: Okay. And so what was the effects on your arm after the stroke, and how is it now?

Rebecca: I found it improved quite a fair bit, where I could rest it just on my legs by itself within the time I was in the hospital. But then at the end of the hospital stay they recommended me to have a Botox injection, which would decrease the muscle tone in the ones that were too strong, and allow the smaller muscles to take over and let my arm move freely. So now I can actually straighten out my arm.

My fingers are still a little bit robotic but that's okay. But I'm glad I have the same, pretty much, range as most people. I'm happy with that.

Chris: Okay. So you mentioned getting injections for the high tone, the spasticity, in your arm. What about getting other function back? What kind of rehabilitation did you need to do for that?

Rebecca: Well generally I did that with the OT, and that was mainly things like learning to lift up the right arm so I could use it to put washing on the line. A lot of things where I had to raise my arm, because the muscle tone just wasn't there in my tricep to do that lift, still to a certain point. It only goes so far and then it wants to stop. But I'm able to try and manoeuvre and push it so it will go to where I want it to go.

But it was very restrictive for a long time, and I found, just repetitive tasks and trying to ... Knowing what you wanted to do and not giving up until you got to that point was the driving factor in making my arm as good as it is today.

Chris: Okay. And are you still working on things like your hand function, and that sort of stuff?

Rebecca: Generally I do that at home. I don't actually go to a physiotherapist anymore. But when I do I try and use what I was taught in hand therapy class, which is, basically, use your right hand on the task that you would use your left hand with. So things like remote controls and things like ... And trying to improve the dexterity and movement in that hand.

Chris: Okay. And is it things like sensation and stuff, like the feeling of touch, that you're also trying to get back? Or is it mostly just about the dexterity?

Rebecca: It's mostly just about the dexterity. I can feel pretty good in my arm most of the time, but generally, if I hurt myself quite bad then it doesn't register as much so that’s as serious as it is. But I can generally feel most of my arm at the moment.

Chris: Okay. And so how do you think you're doing? Do you think you'll gradually get more and more movement back?

Rebecca: I think that is really up to me and how much I want to get on top of it and try and be able to use it properly as well as I can use the left one. And that's just a matter of going through repetitive tasks and trying to increase the tone and movement through those fingers.

Chris: Okay. So then, I guess, from that, what sort of advice would you give other people who've got issues with their arms and hands and shoulders and things?

Rebecca: Well, I've been speaking to a StrokeSafe member that's based in Sydney as well, and he's a hand therapist. He basically, that's his field. And he told me that it's really up to us. How much you get out of it is how much you put in, so I'm happy to keep going as long as I have to go to get to where I need to be.

Chris: Okay. And where is that that you hope to get to?

Rebecca: I'm hoping that one day it won't be so hard to move my fingers around. They'll be a bit more free and not so tensed up.

Chris: Brilliant. Well, good luck with that, Rebecca. And thank you again for coming in, and good luck, also, with all your campaign work. I hope you get the goals you're after there, as well.

Rebecca: Okay, excellent. Thank you very much for inviting me.

Chris: That was stroke survivor Rebecca Schmidt-Lachlan.

Announcer: When you, or someone you love, has a stroke, you are instantly bombarded with a whole lot of medical terms, and it's pretty hard to take them all in. It's like learning a whole new language. To help you, we've created Strokesaurus, a glossary of stroke terms. It's an A to Z guide of the language used around stroke. From atrial fibrillation to Webster pack. It explains key terms in simple language. You can access it on your computer, smart phone, or tablet, at enableme.org.au.

Chris: Our next guest is Dr Annie McCluskey. Annie is an occupational therapist with over 30 years’ experience in stroke and brain injury rehabilitation. She is an honorary senior lecturer at the University of Sydney, and Adjunct Associate Professor at James Cook University. She is also a member of the Stroke Foundation's clinical council, and has been heavily involved in updating the clinical guidelines for stroke management. And she can often be found on EnableMe commenting on issues with upper limbs. Thanks for joining us, Annie, we're very lucky to have you.

Annie: Thank you.

Chris: Now, we put out a call for questions on this topic to our community and we've got a huge response. Now many people seem to struggle with regaining function in their arm and hand, even after they've recovered with their walking. Is this common, and if so, do we know why?

Annie:  Yeah, if you actually look at the incidence or the prevalence of upper limb problems, probably about 70% of people who've had a stroke have long-term difficulties with their arm use, and in that first week after the stroke, about 30-45% of people will have a very severe weakness. Almost no movement or little movement in their arm.

And we think the reason why people have more difficulty with their arm than with their leg is that you have to be able to stand to transfer to get on the toilet, to get in and out of bed. So there’s demand being placed on your affected leg and the muscles in your leg every day when you're doing things on the ward after you've had a stroke, and you can't really manage if you can't stand on that leg, as well.

Whereas, with your arm you can get by with one arm. And the other thing is that the arm, the hand in particular, and the fingers and the fingertips, are quite complex. There's a large area of our brain associated with that. So we think maybe that's why it takes longer for the arm to recover and it's more complex, certainly, for us to train as therapists.

Chris: Given your role ... We've talked about the updated clinical guidelines and they are to be released later this year, of course. But what can you tell us now about what the evidence shows in terms of upper limb recovery?

Annie:  You'll see in the guidelines when they come out, that there are recommendations for people who've got severe weakness, people who've got moderate and mild weakness. And so when I talk about severe impairment or weakness, that's people who've either got no movement in their arm, who can't lift it up off their lap onto the table, or perhaps can lift their shoulder, at least their arm up, but they haven't got any movement in their fingers and their hand.

And for that, the guidelines recommend that therapists should offer people electrical stimulation, robotics – which, certainly, not a lot of public health services have at this point in time, but there is evidence robotics can help get people's arm moving – and what's known as task-specific training where a therapist will target a specific muscle in such as the muscles in front of the shoulder, or the muscles inside the thumb, and try to get that particular muscle to contract once or twice or multiple times.

So that's, really, all we have at the level of somebody who has a very severe weakness or has no movement in their arm. Electrical stimulation, specific training targeted at individual muscles and then trying to get all those muscles to work together, and where robotics are available they're obviously an adjunct, but I should say robotics aren't the be-all and end-all. That they need a therapist to be able to operate them. They're often only available at certain times in hospitals where they are available. So that's one limitation of them.

When we move to people who've got, probably the majority of people who have moderate recovery, they've got some movement but can't use their arm functionally, we can then add in ... As well as those three things we can add in mirror therapy, mental practice, and use of video games and interactive games like the Wii to help drive some movement in the arm.

And then if we move down to somebody who's got a mild weakness, and that might be somebody who may only be in hospital for a short time. They can use their arm, they can hold objects, but may have difficulty with cutlery and writing. That's the kind of people where constraint-induced movement therapy might be offered and could be useful.

Chris: Okay. Can you just explain what constraint-induced movement therapy is?

Annie: Yes, it's a therapy that's offered as an intensive block, usually for three to four hours a day for two weeks. Mostly it's supervised by a therapist, an OT or occupational therapist or physiotherapist, and the person who's practising, who's receiving the therapy will be getting help to do practice – lots of practice – with their arm and their hand.

Their good hand will be constrained, will be restricted inside some kind of a glove or a mitt. Sometimes we just use an oven glove. And that's really to try and drive the brain to get messages down to the hand.

So the main features are intensive practice. Usually two, three, four hours a day, for two weeks. Mostly supervised. The affected arm is working a lot and the other arm is not used, it's constrained in some way. And the final part is there's homework given so people will have five to ten activities they have to try and do at home or on the ward overnight, to try and really get their arm working over that two-week period when they're doing the programme.

Chris: Okay. And so, you said it's not for everybody, this particular therapy.

Annie: It's only recommended for people who've got some wrist and finger movement. So people who can, perhaps, open one or two of their fingers – not necessarily easily, but they can open them – and they can extend their wrist back a bit.

So for someone who doesn't have any hand function, it's not the sort of therapy that would have the same benefits.

I should also mention, as I've said on the EnableMe website or list, that there are quite a few public services now in Australia that are starting to offer constraint therapy even if it's in a modified way, and there have always been private services in Australia that people can go and pay for a two-week block of constraint therapy.

Chris: Now, you did mention robotics as well. Now that sounds like something that's a fairly large bit of equipment that you might get in the hospital. What about for people at home, looking for devices that might be able to help them? There seem to be a lot of things on the market, and obviously buying something to help you with your problems is appealing, but are there devices that can help?

Annie: Well most of the robotics that are available commercially – and there's one called the Armeo, I forget the names of some of the other ones – but you're looking at $100,000 for most of them, and they're even beyond many of the health services. It's only when health services get a grant or a donation that we're often able to buy these items of equipment.

There are private clinics. There's certainly one in Melbourne I know of, and there may be some in Brisbane and Sydney, where people can go and use the equipment at those premises. With the technology, very often they're linked up to a computer and so somebody needs to be able to understand how to operate the computer as well as the actual physical equipment.

Other devices that are available that are less expensive, on the Stroke Foundation Facebook page there was a device which was made by a relative of a person who'd had a stroke, David Hill who's up the north-coast of New South Wales, which is a wooden device that allows the person's arm to slide in a trough and for the person to practise their shoulder movement. It's called the Strong Arm, and that device I've had made up at a couple of hospitals to use with people who are very weak. It allows them to start using their shoulder muscles a bit more easily.

Chris: What about things like the ... I think, like the Saebo-type gloves and arm material?

Annie: Yes, the SaeboFlex, as it's called, which is a bit like a glove with pieces of wire attached to it that needs to be fitted by an occupational therapist or a physiotherapist who's been trained in using the equipment. They cost about $2,500 per device, plus you've got to pay a therapist to help you with fitting them. They can certainly help to open people's fingers and allow them to practise grasping and releasing, if they have a bit of shoulder movement.

We have very little research on the effectiveness of the SaeboFlex at this point, so when I run workshops for clinicians and encourage them what to do and teach them what to do, at this point in time I don't cover the SaeboFlex because the research is still unclear, whether the cost and the amount of time spent fitting it benefits people.

But there are some public hospitals now, and out-patient services, that have a kit. They can buy a kit and fit a number of people with the SaeboFlex and lend it to them to take home for several weeks of practice. And that's certainly worthwhile, people trying if they have access to the SaeboFlex.

Chris: Now, I'm thinking also again about the video games and virtual reality that you mentioned. I understand this is something that you have researched yourself?

Annie: Yes, there's actually a recommendation within our guidelines that video games and virtual reality should be offered to people who've got mild to moderate arm impairment, because it does improve people's arm function when it's used in addition to the more traditional therapies.

And when it is used, it's recommended that people should have at least 15 hours total extra video games or virtual reality games on top of their traditional therapy. So that might happen in the ward. Sometimes people will be familiar with the Nintendo Wii games. They can be quite helpful for getting people’s arm to move in response to something on a screen. They can also be used at home. Many families will have the Nintendo Wii games at home. And sometimes in hospitals they're used on the ward at the weekends and in the evenings to help try and get people’s arm moving.

So they might follow something on the screen with their arm or their hand, but it's not for everybody. Not everybody engages with technology or likes using video games. They find them difficult to understand sometimes and they can break down. Sometimes the therapists don't necessarily always use them or know how to use them. So they can have limitations and that's why we say that they're used in addition to more traditional therapies, not instead of.

Other games that people can use, on an iPad there are quite a few games that would encourage and promote finger movement. So, things like the Fruit Ninja, games like that can be quite useful for promoting finger and hand movement, and can be used in a sitting position.

Chris: Well looking at a different aspect of it now, what about issues with sensation? We've had a few people report things like constant pins and needles in their arms. Is there anything that can be done for that?

Annie: Yeah, people do get unusual sensations coming down from their brain after they've had a stroke. Sometimes in fact, pins and needles can be a good thing, if it's the beginning of feeling starting to come back in fingers that were otherwise quite numb. Probably the bigger problem for most people is that they have no feeling in their fingers or their hand and they can't feel somebody touching them, can't feel cutlery when they pick it up, can't feel hot, can't feel cold, which makes it dangerous for their hand. So sometimes when pins and needles are coming back, that's a good sign. It's the beginning of some recovery in that sensation.

Some people can be hypersensitive to their hand, and I guess most of their rehabilitation is focused on trying to help people get more sensation back in their fingertips, particularly training them to be able to discriminate between different surfaces, different objects, different shapes, different weights.

And there's a very structured programme that therapists can learn to do, called the SENSe Programme that was developed by a therapist in Australia, Professor Leeanne Carey, which runs for 10 sessions and can be used at any time post-stroke with benefits for people's sensation. It doesn't target the pins and needles or the hypersensitivity, it more targets the loss of sensation in the fingers, and I would encourage people with stroke to ask the therapist about that particular programme if they're not receiving any dedicated sensory re-training either as an in-patient or as an out-patient.

Chris: All right, we did talk about some other complications like pain and spasticity, also, in some of our previous podcasts, so I'd recommend people listening to track those ones down if they want to find out more about those issues. One thing we haven't covered before, though, is shoulder subluxation. I get the impression that's fairly common too, is it?

Annie: Not as common as you would think. I can't remember from the guidelines what the proportion is, but certainly people who've got ... If you think about maybe 20, 30% of people having no movement in that first week after their stroke, that's when people are at risk of a subluxation because the weight of their arm can stretch some of the ligaments around the shoulder. And that's the critical time for trying to prevent stretching of ligaments around the joint.

Chris: So if I could just ask, it is the shoulder being pulled out of the joint. Is that what it is?

Annie: Yeah. It's really a dislocation. And once the ligaments of the muscles around the shoulder are stretched, they can't go back again. So it's helpful if we can help people to prevent that from happening in the first place by using things like a lap tray or a sling. We have very little research on the effectiveness or the benefits of using things like lap trays and slings, but it just is common sense that if you can take the weight of the arm away you're possibly going to help protect some of those ligaments.

But the critical thing in that first one to two weeks is trying to get the muscles around the shoulder to contract. So what we called active motor training. So we would want therapists who are seeing patients in hospital to be trying to get those muscles to work using things like electrical stimulation on the muscles at the front and the back of the shoulder.

Shoulder strapping is sometimes used to prevent subluxation, but there's no evidence that that actually does prevent it.

And then if somebody does develop a subluxation despite having slings, despite having a lap tray, it doesn't mean that they can't get recovery back and it doesn't mean that they can't get movement, even if they do have that stretching of the ligaments. Sometimes you can see people who've got a little bit of a gap, a little bit of a dip in their shoulder from the subluxation, but they can still lift their arm up on to the table and still use their arm again to a more or less degree.

Pain is a different thing. Shoulder pain can be a problem. Even when people can move their arm, strapping with tape has been shown to reduce pain and so therapists should offer that as an intervention. And steroid injections may also help to reduce pain, as well as botulinum toxin. That can sometimes reduce pain if somebody has prolonged pain that's stopping them from using their arm.

Chris: Now I guess if people are having problems, like coordination problems or movement problems with their arm, and in particular the loss of sensation, then they are at higher risk of injuring themselves and possibly making their arms worse. How should people try and avoid that?

Annie: Yeah, the main problem for people who get injuries is that they perhaps don't feel their hand when they're sitting on I, or they roll on it at night in bed, or they may burn it on the stove. If people don't have cognitive problems – thinking problems, attentional problems – then they can learn how to protect their hand more.

It might mean wearing a glove when they're out in the cold weather, or when they're doing things that it's likely to get injured with. It's often when people have a neglect and an inattention as well, that's when it's more problematic.

The other reason why sometimes people get injuries is they're just not using their arm, and so the more people can try to use their arm, the better. A sling can be useful for keeping the person's arm safer, but I would encourage people to not wear a sling all the time, because people want to be trying to get their arm to move as early as possible and keep on trying.

Chris: It sounds as though there is a certain extent of people having to, I guess, adjust and compensate for the lack of movement they have in their arm, as opposed to, I suppose ... Well, I suppose the question, should they be aiming for full recovery or is it a certain level of aim for the best you can and adjusting, and are there ways to adjust?

Annie: I've got no doubt that people should be aiming for as much full recovery as early as possible, and should always be aiming high. I get quite despondent, as I'm sure many stroke survivors do, when I hear somebody saying, "Don't worry about your arm. Just get back to walking." Because people do need to worry about their arm and be concerned about their arm, and the more that people start to try and get messages from their brain to their hand and their arm, the more likely they are to be able to get movement coming back. So I would be suggesting to people, have hope, aim high, don't listen to people in that early period after their stroke that say, "You won't get recovery back.”

There are certainly probably 20% of people with stroke who won't get recovery back in their hand and their arm even long-term. We don't know who those people are because some people can get recovery back three months, six months, afterwards, little by little. So we need to have ways of helping those people access therapy and rehabilitation even after they've left hospital, so that they can get some expert advice and help, and know what to do if they are a late-starter.

Chris: Well overall, though, that does sound like a fairly positive message, though. What is your main advice that you want to give stroke survivors, then?

Annie: I'd probably have a few key messages. One is that if people are going to improve their arm and their hand, they will certainly need to be actively involved in the practice. It's not about people doing things to their arm. Certainly good therapy advice can be important, but in the long-term, talking about people continuing to work on their arm for five to ten years as many people will do, they're going to have to find ways to build practice into their daily routine. It might be that they do their practice a bit like their exercises in the morning before or after breakfast, and then they have a review from time to time from a therapist to give some ways to progress and continue to do their practise.

There is a very useful book called Stronger After Stroke by an American that is very helpful and gives lots of good advice, by Peter Levine. It was published in 2008 and there's a new edition published in 2012 that people can order online for about $25. And it was a stroke survivor who suggested this book, Stronger After Stroke. It has good suggestions about motivation and keeping motivation going long-term. If you're keeping working on your recovery, not just on your arm, it has tips for different exercises. It has more accessible information about research. So that's a good resource for people to get if they want to continue working on their physical recovery.

Think about recovery as a long-term, life-long process if you really want to continue to work on your arm. And I acknowledge that not everybody will continue to want to work on their arm or their walking. Their focus might change to other things. Having goals is important and having a measurement of your progress every few months so that you can see that the effort's been worth it. And videos are very helpful for that, as well as some standardised measures that therapists can use.

I think we know that people have very variable access to experts, therapists, beyond hospital, and that's an on-going problem. But there are ways of having tele-rehabilitation if people want to try and make contact with people. If there's nobody locally they can try looking at tele-rehabilitation.

And just going back to practice, I would mention that not only is tele-rehab one way of helping to get some on-going input from therapists, but there's also ways of doing that in a group. So having a group of people who get together to do their practice in a semi-supervised environment, perhaps at a hospital, perhaps in a community centre.

And maybe finally one comment that I'd like to stress, and I hope this has come through, that weakness is the most common problem people comment on. That they can't get their muscles to work. They're not strong. They need to find ways to get the muscles to contract. Spasticity I know is a focus of one of your previous podcasts, but that's not typically what we hear patients and stroke survivors saying in the long-term. It's the fact they can't get their muscles to contract, that they're weak, is the biggest problem that, I think, we need to focus on in hospital and therapists need to focus on when they're offering suggestions. And you'll see that coming through in the guideline recommendations as well.

Chris: Great, well thank you very much, Annie. I look forward to seeing those guidelines when they're released, and I look forward to seeing more of you on EnableMe.

Annie: Okay, thank you.

Chris: That was Dr Annie McCluskey.

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Chris: Finally today we have physiotherapist Tahnee Winks, who works in the Stroke Foundation's Follow Up service. Thanks so much for joining us, Tahnee.

Tahnee: Thank you, Chris. It's nice to be here today.

Chris: In your calls to people, do you often encounter people are having issues with their arms, hands, and shoulders?

Tahnee: We do, actually. It's quite a common problem following stroke. But it's really variable and we certainly speak with people of all ages experiencing a variety of issues, actually, with their arms or hands or shoulders. And often once they're home it can actually become more apparent what task or activities including the arm or upper limbs are challenging, and what tasks are most important to them to be actually able to perform, or what's going to make their life easier, or help them get back to the activities they really want to get back to doing.

So, because the issues can vary significantly, so does the impact on peoples' functions and their ability to do the things that they want to do in their daily life. And it can also then impact on their independence as well. So I often find that for the time we contact people sometimes their goals have changed as well from maybe the early stages when they were in hospital, and it becomes more apparent as to how they want to participate in their general activities of daily living, or what their goals are to return to.

Chris: Yeah, it sounds like there is a complex range there that you've got. And I don't want to over-simplify things, but could you give us the top tips that you would give to people who are experiencing upper limb problems?

Tahnee: Because it is such a broad area, probably the top tips that we would recommend when we're talking to people is to certainly access help professionals who have experience in stroke and neurological rehab as a good starting point. So talking to a physiotherapist or an occupational therapist in particular can be helpful to look at how you can move and use your arm and look at what is there that you would like to work on, and allowing them to help assess and work with you and test for the strength and the movement quality, and the feeling that you do have in your arm. And with looking at working with you and looking at those things, they can work with you to find out what's the most important things for you and to develop a rehabilitation programme specific to your needs and goals.

Therapists can give guidance and advice of how to also care for your arm, especially if it is particularly weak or if you are experiencing any of the symptoms of pain. So knowing how to care for it and position it safely, and any family members or people involved in your care, giving them advice on what might work best for you and how to support the arm to try and reduce the risk of damage is also important.

But certainly there are lots of ways to access appropriate health professionals. So some people might have already been involved with a physiotherapist or an occupational therapist whilst in hospital, or been referred on to some on-going rehabilitation either as an out-patient or in the community. So through hospitals or rehabilitation units is one way to access allied health professionals, or certainly through community rehabilitation settings as well.

If you haven't had anybody involved with you at this point in time or at a point in time when you might need somebody, you can also talk to your GP and your GP can often also help with making referrals to allied health professionals.

So you can also access private practitioners as well. So there are professional bodies such as the Physio Association or Australian Physiotherapy Association and Occupational Therapy Australia, and there are certainly links to those associations on EnableMe to help people to know what services or what organisations are out there that you can access.

And certainly, if anybody has any trouble and would like to know more about how to access somebody to give them some guidance and advice on that area, then certainly the StrokeLine allied health professionals are there to help as well.

Another tip that we had was around goal setting. So it's really important that people determine what's important to them and that you can have your own goals about activities that you'd really like to be able to perform, or that maybe you're finding challenging but it’s important to you to keep working on. How to participate and keep up with the motivation to keep working hard to achieve those goals.

So some people might have a really big general goal, and sometimes the challenge is also to find the ways of working towards that bigger goal by setting smaller goals, and then you can see how you can achieve them along the way, which helps with motivation and keeps you going and keep you motivated to keep working hard. So therapists can certainly help you with goal setting, as well. And also finding ways to measure how you're going with your activities and with your goals can also prove really valuable and important in actually keeping motivated.

So therapists are also able to help you review your goals and help keep progressing them as your progress improves or as your needs change. But certainly over time people do find there are new things that they want to achieve or work towards, especially if they've achieved the goals that they've already set for themselves.  And again, if you need help with goal setting, which can be new for some people, there's also information on EnableMe about goal setting, as well.

As might have been mentioned earlier, trying to achieve recovery through neuroplasticity, which is a very, very important topic of research and certainly one that there's some evidence around, practice is very important, and repetition and lots of on-going practice is the key to driving recovery and neuroplasticity. And so having said that goal setting, I thought, was a key point, having goals that you're happy to work towards helps you to increase the motivation to practise at the right challenge point.

So making sure that things aren't too easy, but certainly not too difficult, is a key factor. So having things that are functional, that are useful, and purposeful to you, is a really good way of actually being motivated to continue to practise tasks over a long period of time. So if you haven't been able to start or get any advice around certain activities to keep practising, then therapists can certainly help work with you to come up with an individual programme to best meet your goals and your needs, and at the right challenge point or level for you to start with, and also help you to know ways of measuring how you're going with that, and knowing how to then progress as appropriate for you.

And even if some people don't have a lot of movement, there are other ways of actually practising and learning how to get advice to be able to incorporate your arm safely and comfortably, to be able to be used in certain ways, just in meaningful everyday activities or tasks and positioning is also a good way of actually incorporating that arm into meaningful practice. And also using mental practice as well can be really valuable.

A therapist like occupational therapist or physiotherapist can be beneficial in those ways to help you work towards your needs at your level, and to help keep you motivated to keep practising, because there is that potential for change. But you certainly need the specific repetitive task practice.

My last tip, Chris, I’d say, would probably be that sometimes progress can seem slow, and at different points in time people might benefit from having some ongoing peer support or social support around them. And also having balance so that it's important to also do what you enjoy and use your whole body as well. And certainly being connected to stroke support groups can be really valuable for a lot of people in knowing that there's other people that do share some similar experience or maybe have found things or know of things that can work.

But everybody's individual and certainly just knowing how to access different supports can be really valuable to people once they're home from hospital and have been living in the community and have aims of doing things that they would like to get back into and do, or even return to work for a lot of people. And so on EnableMe there's also links to or information about support groups, and there's also a way that people can communicate with each other in the community and share stories and information. And there's a lot of information on the EnableMe website about upper limb and hand management.

So they're probably my top tips at the moment, Chris.

Chris: Anything else you would like to add there, Tahnee?

Tahnee:  Probably my main key is that, certainly, because there is potential for change but it can be hard to see change quickly, so persistence is really important. The more opportunity for practise that specific and meaning for you, then the more opportunity there is for ongoing recovery.

Chris: Well, thank you very much, Tahnee, and thank you for giving a bit of a boost there to EnableMe for the support and information that is available there. Now if anyone wants to find out more and speak to someone about their issues, they can call StrokeLine and speak to a health professional. That is 1800 787 653 or 1800 STROKE.

And that goes for anyone who wants to know about their specific situation. As I said, we had a lot of questions submitted and we weren't able to cover them all. So please ring StrokeLine, or in a few weeks you'll have another chance to ask some questions when we hold our online group chat on upper limb issues. So if you're an EnableMe member you'll get a notification of when that will be taking place, and you can also, of course, through EnableMe ask your question and get a response from health professionals and other stroke survivors.

And that is it for our podcast today. If you like what you've heard, please give us a good rating and review on iTunes as that helps other people find our podcast. Thanks again to our guests Rebecca Schmidt-Lachlan, Annie McCluskey, and Tahnee Winks.

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 the series, at our website enableme.org.au.

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

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

The music in this podcast is “Signs” by stroke survivor Antonio Iannella and his band The Lion Tamers. It was recorded at Antonio's studio, which you can find out more about at www.studiofour99.org.au.  This EnableMe podcast series is produced by the national Stroke Foundation in Australia with the support of Allergan.

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

You might have muscle spasms or uncontrollable jerky movements in your arms or legs, changes in your posture, or unusual limb positions, and it can cause pain. It can be treated, though. Physiotherapy or occupational therapy can help you adapt and improve your movement. There are other possibilities, too, such as injections with botulinum toxin type-A, electrical stimulation of the muscles, electromyograph, or EMG bio feedback and muscle-relaxing medication.

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

Allergan is proud to bring you this EnableMe podcast.