How spasticity can affect you
Episode 3, 8 June 2016
After a stroke, many people have muscle weakness and loss of movement. But you might also be experiencing spasticity, which is tight muscles or stiffness in your arms, fingers or legs. This can lead to muscle spasms and uncontrollable, jerky movements in your arms or legs, changes in your posture, unusual limb positions, or pain. In our next podcast, we’ll look at how spasticity can affect you and the treatment options available.
Professor John Olver is the Medical Director of Rehabilitation at the Epworth and a leading researcher on spasticity management. He was the primary author for the international consensus statement for using botulinum toxin for lower limb disorders in adults.
Adrian O’Malley is a horticulturalist and avid bushwalker who had a stroke in 2006 when he was 34. He’s committed to helping make the lives of stroke survivors better. As he says, “A stroke doesn’t have to define every aspect of your life.”
Katherine David is a rehabilitation physiotherapist and one of the health professionals behind the Stroke Foundation’s recovery resource My Stroke Journey and the information and advice service StrokeLine.
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: People often associate stroke with muscle weakness. After all, that's one of the F.A.S.T. signs, but after a stroke you can sometimes find your muscles are too tight, leading to stiffness in your legs, arms, and fingers. This is what is known as spasticity, and it can cause spasms, it can affect your limb positions, and it can be painful. But although spasticity is a problem, there are ways to deal with it.
Today we'll be speaking to stroke survivor Adrian O'Malley about his own experience living with and managing spasticity. We're also welcoming Katherine David, physiotherapist from the Stroke Foundation's StrokeLine, to give some advice on getting treatment including how to find a health professional who can help you.
First though, for an overview on what spasticity is, and what treatments are available, we have professor John Olver, who is Medical Director of Rehabilitation at the Epworth in Melbourne. He's a leading researcher on spasticity management, and he was the primary author for the International Consensus Statement for using botulinum toxin for lower limb disorders in adults. Welcome to our podcast, John.
John: Thank you very much.
Chris: The first question I really want to ask is, how common is the problem of spasticity after stroke?
John: Well, it's difficult to say precisely because it varies depending on who's reporting it. We think it's in about 30% of stroke survivors will experience spasticity at some time in their recovery period.
Chris: Okay, and do we know what causes it?
John: Yes, all of our muscles in our body have a certain amount of tightness or tone, and that's controlled from the brain. After a stroke, where there's some damage to the brain, that control is compromised, and therefore, the sequelae of that is the muscles tend to tighten in certain patterns. That's what we call spasticity. It's tightness or increased tone due to the fact that the regulation from the brain, which usually keeps the tightness at a certain level, has been disrupted.
Chris: Okay, and is this related to, some people report this as when they feel that their limb is too busy, or they feel like their limb is giving up as a result of overwork. Does that affect it at all?
John: No, overwork usually doesn't affect it. The problem really is that the limb is tight, so it can be hard to move if you're able to move it. The muscles, even though they seem quite tight and strong, they can be actually quite weak. It's not due to overwork, it is due to the way the tightness of muscle is set and controlled from the brain.
Chris: What stage then people should get treatment with it? If it's going to be so common, is it the sort of thing you get treatment for straight away, or is there a certain level that you recommend people aim for?
John: It's an interesting condition because there's some people where it can be quite apparent within a few days or weeks of the stroke. There is another peak in tightness that can occur at about 18 months afterwards. People should get treatment when the spasticity, or the tightness of their arms and legs, becomes such that they can't move them, or it impairs movement. It's a matter of if they lose function, then they need some treatment.
Chris: Okay, if they do need treatment, what options are available for people?
John: The majority of people, the spasticity, as we call it, or increased tone, can be improved just by recovery. And certainly, it can be improved by the use of physiotherapy techniques which include stretching muscles, strengthening them, strengthening muscles that oppose the tight muscles, and then retraining normal patterns of movement. That probably takes care of about 90% of spasticity.
Where it becomes too severe, and physical techniques don't work, then we've got medication, some of which we can take by mouth, and now we've also got injections such as botulinum toxin, of which one brand is commonly called Botox, that can be injected into muscles to reduce the tightness.
Chris: This is something you've done research on yourself, I understand.
John: Yes, we have a weekly clinic where we treat spasticity. We use a lot of botulinum toxin in the clinic to relax muscles, but that's only part of the treatment. The more significant part is the physiotherapy and/or occupational therapy they get to stretch the muscles and to strengthen the muscles after we inject. We do this at any time in a patient's recovery where the spasticity is starting to inhibit the movement of arms and legs.
Chris: How does the botulinum toxin actually work then to help?
John: When you have a thought that you want to move a limb, there's a series of electrical impulses that goes down nerves in the brain, and then there is a chemical released at the nerve ending as it enters the muscle. That chemical causes the muscles to contract.
Botulinum toxin basically blocks that chemical from being released at the end of a nerve when it's activated. Spasticity is basically overactivity of nerves. So if you block a few of them, the nerves don't react as much, and therefore, the muscle doesn't tighten as much; therefore, you've reduced the spasticity.
Chris: Okay. You mentioned that you do other therapies along with that. Is that important for those physical therapies to be done when people are having the injections, in order to get the most out of their muscle function?
John: Yes, absolutely. In fact, we won't do injections without knowing that someone has access to the therapy afterwards. Botulinum toxin only lasts for about three months and then it wears off. Within that time, that's the window of opportunity for the therapists to really work with the muscles, improve the range of movement around joints, and as I've said before, strengthen and stretch muscles, to enable the person to have more normal movement happening.
Chris: Given that it only lasts for three months, is there a limit to then the long-term use of it? How long you can get benefit out of repeated use of it?
John: Not that we know of at the present. It's a medication that hasn't been used for all that long, but we believe you can keep on using it. The issue is that if you use it, and you have a lot of therapy, and you inject people three or four times over a period of a year or so, and they return to the same spasticity that they had, then it's probably worthwhile not continuing and looking at other treatment.
Also, botulinum toxin is very expensive, and for certain indications such as the arm in stroke, it is a PBS listed drug, but only for four injections. I think that like any treatment, if you trial it, and it works or it doesn't work, then you would look for some other treatment that might be more effective.
Chris: Now, what other treatments are there available out there? You mentioned some other medications. Are these things like muscle relaxants?
John: Yes, there's two often-used muscle relaxants. One is called Baclofen, and the other is called Dantrium or Dantrolene Sodium. One of these of works at the spinal cord level, and the other works like botulinum toxin at the muscle level. They both try and reduce the tightness or tone in muscles.
The problem with using oral tablets are that they're not as targeted as botulinum toxin where you're actually injecting an individual muscle, so you get more of a generalised reaction. The other problem is that you can get some generalised side effects such as general weakness, which may then further compromise your ability to move.
So we tend to use these more general drugs a little sparingly. They work in some people, and in others the side effects can be unacceptable, and we've got to look at other treatments.
Apart from that, if we've used Botulinum Toxin, it hasn't worked, then there are surgical techniques to lengthen muscles and to release joints where they've become contracted. Sometimes we have to resort to those treatments, as well.
Chris: I imagine that's more of a last resort scenario, is it?
John: It is a last resort, but sometimes people have spasticity that's fairly widespread, and the surgery can mean that you've taken care of it with at least one area of the body, which means that you can then concentrate the oral treatments or the injections in another area. It's not always last resort, but usually we use the more conservative techniques first. But I emphasise that physiotherapy and natural recovery are the two major ways of treating spasticity.
Chris: Is there anything you're personally researching at the moment that you think is interesting?
John: Yes, well we've been looking at the outcome after injections because it's still difficult to know who will respond and who won't. I was part of the development of a Stroke Outcomes Scale that asked about a lot of other things, but also asked about tightness of muscles, and that's been endorsed by the World Stroke Organisation, and we're now trialling that on 300 patients at both the Alfred Hospital and Epworth to see what the actual incidence of tightness as reported by patients is six months after stroke.
We're also looking at developing a new screening tool to help doctors work out how to treat spasticity. That will be published in the next few months.
Chris: That will be for general practitioners, those sort of people?
John: It will be for general practitioners and anyone who's trying to work out how significant a person's spasticity is in terms of trying to determine how best to treat it. The scale's been developed, it's an international collaboration. That'll be published in an American journal, and we hope that it will be validated and will help the population it's designed for.
One of the other research initiatives that we're setting out on is to try and find out exactly how much of a problem spasticity is when people are getting back to walking or using their limbs, because it's not the only problem. Weakness in muscles can be an equally devastating problem, and we're try to work out the contribution of spasticity in long-term physical outcomes after stroke.
Chris: Best of luck with all of that.
John: Thank you.
Chris: Thank you again for talking to us.
John: That's a pleasure.
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Chris: We're talking about spasticity after stroke. Someone who has experienced it and had to become an expert himself is our next guest, stroke survivor Adrian O'Malley. Adrian had his stroke at 34, but from the start, he's been determined to not let it stop him living his life. Adrian, thanks for joining us.
Adrian: Thanks, Chris, for having me.
Chris: Look, we'll start where we always do and ask you to tell us your stroke story.
Adrian: My stroke story. I've almost been telling this story for ten years now. My stroke was on the 6th of August 2006. And my stroke, I had stroke symptoms leading up to it, but not knowing anything about stroke, I was completely unaware and also I was a ticking time bomb. The reason for my stroke was a congenital heart disease that led to really high blood pressure, I had a narrowing of the aorta.
So I presented to casualty—and here's a little plug for Know Your Numbers—I presented to casualty and my blood pressure was 240/150. Things rapidly went downhill from there. The next morning, I was luckily very close to a hospital with a stroke unit, and I spent nine weeks there and had a heart operation, and got out of the hospital, and ten days later became a dad.
That was a pretty good motivator to get well and get out of hospital. It's a pretty radical way to motivate yourself, but it was. It was a really important thing for me to get as well as I could, so that my wife didn't have two bums to wipe and two mouths to feed. I was very happy that I got out of the hospital in time for that. But because I had still dressings on my wound from my heart operation, I wasn't allowed to attend the birth. I had to stand outside like a 1950s dad pacing the room.
Chris: I imagine you weren't allowed to smoke though in that circumstance.
Adrian: I didn't have a pocket full of cigars in the waiting room, no. That was very early days for me, and it was intensive outpatient rehabilitation after that. Physiotherapy, occupational therapy, cardiac work as well.
One of my big goals when I first spoke to my best mate in hospital on the second day that I was there was that I wanted to be bushwalking. I love bushwalking, I wanted to be bushwalking within 12 months, which was I think a bit of what you call a stretch goal because I was completely hemiplegic on my right side at the time. And twelve months to the day from discharge, I was starting a four-day bushwalk, and I was back at work three, four days a week.
That first twelve months was just appointments, appointments, appointments. As I said, physio and OT mainly, and neurology and cardiology.
Chris: Right. It sounds like a lot of hard work. How did spasticity then affect this recovery?
Adrian: I was lucky, Chris, because my affected side is not my dominant side. I'm left-handed, and I'm right-side affected. That was a bonus for me in terms of functionality. If it were the other way around, I imagine my circumstances would be a lot different.
Early on, it was learning to adapt to new tools. I can't cut my meal with a knife like you, so it meant I had to go and get a different knife so I could learn how to cut a meal. I've adapted my wardrobe so that I wear shirts with pressed studs. I wear nice western shirts and flowery shirts with pressed studs, so I don't have to do up buttons.
For me, it's as much a physical exercise as a thinking exercise. You have to think about, deal with the consequences of what the effects of the stroke are, and what spasticity means. You try and make your life easier by adapting in ways around it, I guess.
Chris: Okay, but as well as adapting, I suppose, you've had some treatment for it, I understand.
Adrian: Lots and lots of treatment, yeah. It was interesting. I had a look at a photo before the podcast today. And it was the 1st July 2009, I was sitting in the departure lounge of Sydney about to head to Melbourne. It was a photo of my hand, it was increasingly getting tighter.
This was about three years after my stroke, and I had found out via a good friend who's a neurologist that Botox had been listed for upper limb spasticity on the PBS. He had a colleague in Melbourne, and I was off to Melbourne to go and have Botox injections. And I look at that photo of almost seven years ago now, and my hand was quite tight.
The tone ... It was to the point where it was knuckle at times, and a claw hand, or a fist is not a particularly useful hand. I was motivated to do as much as I could, but I couldn't overcome the tone in terms of stretching and doing exercises. The tone was greater than the stretching, I guess.
Chris: We've heard from Professor John Olver that it's important that if you're having those botulinum toxin injections, and to do some exercise along with them to make the most of it.
Adrian: This is true. My work for many years post-stroke was horticulture, so I was doing physical job using my hands, and that was my rehabilitation, I guess, was having to use my hands to do my job. It was good exercise. It was functional tasks that helped me in day-to-day stuff. I guess, OTs and physios would think that it's an unusual way of doing it, but I had to do it for work, so I used my hands as best I could.
Chris: Well, we've certainly heard, I guess previously, the importance of doing activities and tasks that are valuable and meaningful to you. So that makes a lot of sense from that point of view. Has all this worked for you? Have you managed to get a lot of improvement over the last few years?
Adrian: My goals right from the start were around maintenance. It was around keeping what I had and not letting it get worse. As what I knew, over time was that the tone would get worse. Reflecting back on that photo, my hand was worse then than it is now. The functionality remains the same...
Well, no, that's not true. I sleep with a splint, I wear a glove every day or six days a week that's tight. An orthotic splint, I guess you'd call it, that I wear every day. And I have Botox injections, and if I think back to my original goals which was maintain what I had, that's achieved that.
I didn't want to play concert piano or anything like that. I wanted to do simple tasks of daily living, and in terms of heading down to Melbourne, sitting in that departure lounge at Sydney, thinking about going to Melbourne to have Botox injections, I was asked by the team that was going to do it.
This was lovely because throughout, in my experience of rehabilitation post-stroke, very often, literally and figuratively, you're a passenger. You get pushed around at times in wheelchairs because you can't walk. You have to follow instructions. And in this instance, the rehab down there that were going to inject me asked me for three simple functional goals. That was a lovely experience, and I couldn't give them an answer straight away because I'd never been able to participate in my rehabilitation in a way like that before.
I reflected on that and got back to them and said three simple tasks. And OTs, if they're listening, these are activities of daily living really. My goals were important to me, and perhaps set low so that anything over and above those goals was a bonus, which sets up your metal health with what's going on between your ears, as well as what's going on in your hand.
The three goals were to turn on a tap at home that I have to deal with every day, and to turn a door handle that I have to deal with every day. At that stage, 2009, Eve was three, that's my daughter, and we were walking home from daycare. And it was to hold her hand when we're crossing the road, and that's a very simple but very pleasurable thing to do is to hold hands with your child. They were my three goals, and they were all achievable.
Chris: With what you're saying then, it's been maintaining this function, this level of function for you. Has that been difficult over so many years then to keep that up, particularly with the limitations on what some of these therapies, their availability and what they can achieve?
Adrian: Given the choice, I would have Botox, Dysport, botulinum injections every three to four months for the rest of my life, at least for the rest of my working life. That would be a nice thing. Unfortunately, that's not currently available. I think in terms of the way Botox injections are administered at this stage… My mate wrote me and said, "Botox has been listed on the PBS for four courses for upper limb spasticity." That's medical talk for you get four bites of the cherry.
I think that's a really cruel way to administer it, because it might take three of those four injections to work out what muscles to inject and how much to inject you, by which stage you've got one left and you've eaten all the cake, and that's got to last you the rest of your life.
Botox is 100% reversible, unfortunately, it wears off. Those four courses I think are cruel in that it lines you up for failure. I've been fortunate to have a continuing relationship with that team in Melbourne. I don't know that that's an opportunity that everybody gets, to continue to be treated with Botox. If they changed how they list it on the PBS, that would make a big difference over the working life of people who have strokes below the age of 65.
Chris: That sounds like something you're really passionate about there. What message would you have for other stroke survivors, or other advice?
Adrian: In terms of going down the path of Botox, my suggestion would be, have one relationship with one treating doctor over a long period of time because it's going to take time to get it right and to work out what muscles to inject and how much to inject them.
It's as the doctor who injects me says, and he's been doing it for a long time, it's an inexact science because in those injections over the years that I've had them, sometimes you get a silver bullet. You get really an efficacious, a really good round of injections, and everything's sweet and it lasts, in some instances, up to 14 or 15 weeks which is great. Other times, I've had Botox wear off after eight weeks. It's not going to be the same on every occasion.
But if you take one of those variables out, which is always seeing the same doctor over a long period of time, I'd absolutely recommend that because they'll get to know you inside and out.
Chris: Thank you very much for sharing your experience with us, Adrian. Best of luck with maintaining and achieving your goals.
Adrian: Thanks very much, Chris.
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Chris: All right, so we've heard a lot about the impacts of spasticity and how there are many options for treating it. But where do you start if you're experiencing spasticity? To give us some advice, we have Katherine David, a physiotherapist, and one of the health professionals behind the Stroke Foundation’s StrokeLine. Thank you for joining us, Katherine.
Katherine: Thanks for having me.
Chris: Okay, I suppose the question I really want to know is, what are your top tips, what do you advise for someone who is experiencing spasticity?
Katherine: I think probably my first tip would be, and certainly this comes as no surprise from a physio, my first tip would be keep active as much as possible and move regularly. Spasticity will tend to get worse when people aren't moving much, unfortunately.
What we see is that when people become inactive, a number of other problems can occur which can make the spasticity worse. We can say that people can become weak in other muscles, and that can certainly impact on the severity of their spasticity.
Unfortunately for some people, if they don't move much at all, and particularly, in certain joints, if they're not moved much, we can see that contracture can develop over time. A contracture occurs when muscles are stuck in one position for a period of time. The muscles basically shorten in that position.
Chris: A contracture is different to spasticity, is it?
Katherine: It is, yes. A contracture is basically a common problem that we would see as a result of severe spasticity.
My second tip would be to be linked in with some therapy. This might be physiotherapy, it may occupational therapy. Really, the role of the therapist in that circumstance is to work out how people can stay active, and work with someone to keep them as active and keep them moving as much as possible. They can also look at ways to reduce the impact of spasticity, and they can try and address any secondary problems that might come about from spasticity.
The other thing that therapists can do is work out whether or not there might be a role for medical management. Very often, people might be referred onto medical practitioners to look at particular medical managements alongside the therapy.
Chris: These are things like botulinum toxin, and muscle relaxants, and all those sort of things, yeah?
Katherine: Yeah, absolutely. Really, I think that leads on to my third tip is for people, particularly when they have more severe spasticity, a referral to a medical practitioner might be indicated.
That could be a neurologist, it could be a rehab specialist, so a doctor that specialises in rehab, or it could be to a spasticity clinic, which is basically a clinic that has a number of health professionals that can specifically assess someone for their spasticity and work out best management. Very often, you might need your GP to make the referral to either these doctors or to a spasticity clinic.
Yeah, particularly in some cases, botulinum toxin might be recommended. I think it's really important for people, if they do go on to have medical management like botulinum toxin, that they do also have therapy in combination with those medical managements. That means that we can get the best outcome from the medical management.
Chris: You mentioned the spasticity clinics. Are there many of them around Australia?
Katherine: Yeah, so a lot of hospitals, particularly the larger hospitals, will have a spasticity clinic. Sometimes, there are lengthy waiting lists, and they're often more so for people who have more severe spasticity that is really affecting their function. Generally speaking, a GP would need to make a referral to the spasticity clinic.
Chris: In terms of the physical therapies that you mentioned, like with the physios and the OTs, what kind of things, could you be a bit more specific of some of those therapies that people can be given?
Katherine: There's certainly a number of different physical therapies that are available. The types of physical therapies will depend quite a lot on what sort of difficulties people are having due to their spasticity, and how severe the spasticity is, but also what area of the body is affected. Quite often it will be the muscles around the elbow, or the hand, or also the foot.
But generally speaking, a physio or an occupational therapist might work with someone to find ways for someone to stay as active as possible so they don't develop secondary problems from the spasticity. They'll also look at particular exercises that they can do to improve the quality of movement and the strength of the muscles around the affected joints.
Exercises might also focus on improving strength in other areas like the trunk, for instance, to try and make sure that people have a stable base to work off. Often if someone has spasticity in an arm or a leg, if we can improve stability around the trunk, so improve someone's core stability, that can lessen the impact of spasticity in the arm or the leg.
I think the other thing that physios or occupational therapists would often look at is whether or not there's a role for electrical stimulation. That's basically used to stimulate muscles around the area of spasticity.
Chris: Okay, so it's the physios who would actually apply those devices?
Katherine: Yeah. Either physios or occupational therapists can work with people to use those devices and set up a program.
Chris: Right. Not many people necessarily have a physio that's working with them at the moment, and sometimes people have trouble finding a physio or an OT. How do they do that? How do they get a referral? How do they find someone to help them manage their spasticity?
Katherine: People can either see a physio through the public health system, and very often seeing a physio through the public health system will be at no cost, or it might just be at a small cost. Otherwise, people can see someone privately, as well, see a private physio.
If someone wants to see a physio through the public health system, quite often you'll need a referral from the GP. That would be my advice, is to have a chat to the GP about making a referral. Physios through the public system are often available in community centres or in hospital outpatient departments.
It's important that the GP makes the referral to a physio who is specialised in neurological treatment, so someone who is really experienced in dealing with someone with stroke, and has experience with dealing with people with spasticity.
The other option, as I mentioned earlier, is to see someone privately. If people want to find a private physio, they can actually jump onboard the Australian Physiotherapy Association website. On there, they've actually got a ‘Find a Physio’ function, a button you can click on to find a physio that works in your local area. They can search for a physio that specialises in neurological rehab, so again someone who is experienced in that area.
There is also the availability of Medicare rebates for people that might want to see a private physio. If they want to access Medicare rebates to see a private physio, they'd need to have a chat with their GP, and the GP can make the referral and fill out the paperwork to access those Medicare rebates.
Chris: Is there a specific, like a chronic management plan or something they need to have for that?
Katherine: Yeah, absolutely. That's exactly what it's called. It's usually referred to as a Chronic Disease Management Plan.
Chris: Right, I knew there was a name similar, yeah.
Katherine: Yeah, absolutely. I'd recommend people to have a chat to their doctor about being put on one of those plans to access the Medicare rebates.
Chris: Okay, well, it sounds like that there's quite a few options there then for people to get some help. Well, thank you very much, Katherine.
Now, you can speak to health professionals like Katherine on the Stroke Foundation's StrokeLine. That's 1-800-787-653 or 1-800-STROKE which is a bit easier to remember, I think.
Announcer: At Allergan, we know every stroke is different and so is every recovery. After stroke, many people have muscle weakness and loss of movement, but you might also be experiencing tight muscles or stiffness in your arms, fingers or legs. It’s called spasticity. You might have muscle spasms or uncontrollable jerky movements in your arms or legs, changes in your posture or unusual limb positions, and it can cause pain.
It can be treated though. Physiotherapy or occupational therapy can help you adapt and improve your movement. There are other possibilities too, such as injections with botulinum toxin type A, electrical stimulation of the muscles, electromyograph or EMG biofeedback, and muscle-relaxing medication.
What is important is to start your rehabilitation as soon as possible after a stroke and to discuss your goals and progress with your rehabilitation team at every stage. Allergan is proud to bring you this EnableMe podcast.
Chris: Thanks again to Katherine and to our other guests, Professor John Olver and Adrian O'Malley. Next month, we have the topic that I promised last time, which is fatigue. We'll talk about knowing your limits and the emerging evidence-based techniques to manage it.
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 StrokeLine who can answer your questions and give evidence-based advice.
The advice given here is general in nature and you should discuss your own personal needs and circumstances with your health professional. If you would like to suggest a topic or provide feedback, contact us via the website enableme.org.au.
The music in this podcast is “Signs” by stroke survivor Antonio Iannella and his band The Lion Tamers. It was recorded at Antonio’s studio which you can found 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.