enableme Podcast episode 1 transcript

Announcer:	Welcome to the Enable Me 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:	Welcome to the first enableme podcast.  My name is Chris Lassig, I am the content writer on the website enableme.org.au and I am extremely excited that we are taking enableme into a different dimension. 

Now for this first podcast we thought we wouldn't muck around and instead we would talk about the number one topic that stroke survivors ask us about, which is neuroplasticity.

For a long time scientists believed, and patients were told, that the brain couldn't change.  Once function was lost it was gone forever.  In recent years that view has changed, with the growing realisation that the brain continues to develop all our lives.

This concept of neuroplasticity came to popular attention through Norman Doidge's best-selling book, The Brain That Changes Itself.  In this book Dr Doidge tells some remarkable stories about stroke survivors relearning to walk, move their arms, speak, all through neuroplasticity.

[00:02:00]	It's no wonder then that many stroke survivors want to know how to do this themselves. How can they take advantage of their brain's amazing potential? But there's still a lot of confusion about what it actually entails, what to expect or even who can help you with it.

To get to the bottom of this we're going to speak to a number of people with direct knowledge and experience with neuroplasticity. This includes Dr Michelle McDonnell, who is a physiotherapist and researcher who studies how the latest developments in neuroscience can be used in stroke rehabilitation. We have Karen Bayly, a stroke survivor who has participated in trial therapy to restore sensation, and who has actually seen neuroplasticity changes on her brain scans. And Simone Russell, who is an occupational therapist and is one of our health professionals who answers your questions on the National Stroke Foundation's StrokeLine.

First up though, to explain what neuroplasticity is and how it's possible to change your brain, we have Dr Lavinia Codd, a neuroscientist from the Queensland Brain Institute.

Thank you for talking to us, Lavinia.
	
Lavinia:	Hi.
	
Chris:	I should point out that you're not just any old neuroscience, if there is such a thing as any old neuroscientist.  You're actually a stroke survivor yourself.  Can you tell us what happened?
	
Lavinia:	Sure. Well, I'd had a headache for a couple of days, it was a fairly mild headache so it didn't prevent me from going to a work function that my husband was attending.  It was actually a ball, and right at the beginning of that evening, somebody made an announcement and there was some bright flashing light as part of that announcement and that's when I had a stroke.

I felt immediately fairly weak, but I didn't actually collapse.  I had trouble reading the menu, and I didn't realise it at the time but I had lost my entire left field of vision.  When my husband held up fingers for me to count I couldn't count them unless I touched them.
	
	So we knew that something was terribly wrong, and we left immediately and went straight to the hospital. Unfortunately for various reasons, probably because I was walking and talking and because of my age, they misdiagnosed me as just having a migraine, gave me vasoconstrictors and sent me home. It wasn't until a few days later that we went back to hospital where they diagnosed me correctly as having had a stroke.

The parts of my brain that were affected were my occipital lobe, my medial temporal lobe, and my hippocampus, all on the right hemisphere.  I’ve lost my vision on the left and I have problems with learning and memory, and with spatial navigation.
	
Chris:	In addition to this though you have completed a PhD in neuroscience.
	
Lavinia:	Yes.
	
Chris:	Now, was it your stroke that got you interested in neuroscience?
	
Lavinia:

[00:04:00]	Oh definitely. So I had been a chartered accountant before I had children but I wanted a career change. So I went back to uni and I was part way through the first year of a science degree when I had the stroke.

Initially I had been in interested in plant biology and I was still doing the general first-year subjects. I took a year off uni and my neuropsychologist Andrew McAllister was instrumental in convincing me to going back to uni.

I basically went back as a form of therapy and I continued on with a sort of a general science degree, and as I progressed I did some psychology subjects and then I learned about neuroscience. That's when I was asked to enter the advanced studies program in science, and as part of that we had to find a mentor.

That's when I had a really good look at the different professors at the University of Queensland and I found out about Professor Perry Bartlett and the work he was doing at the Queensland Brain Institute, which sounded totally amazing. As you mentioned, most strike survivors were interested in neuroplasticity and here was somebody in Brisbane studying that very concept.
	
Chris:	Neuroplasticity, as you said it's kind of a fairly recent development I suppose in the scheme of things.  Why did people think the brain was fixed for so long?
	
Lavinia:	I guess there just really wasn't any evidence initially. And a lot of pioneering work done by Ramón y Cajal showed how intricate the brain was.  Even though he described growth cones, it just seemed impossible that the brain could change its structure after you were born.

It wasn't until the 1960s, the mid-1960s, that Altman and Das provided the first evidence that in fact new cells were forming in the brain. And then Professor Perry Bartlett was one of the first groups, along with another group, that simultaneously discovered that in fact new neurons were being produced in the brain.  Which is a pretty amazing concept, given that it had been believed for so long that the brain didn't change.
	
Chris:	What else happens in neuroplasticity? Is it just about new brain cells, or are there new pathways in the brain?
	
Lavinia:

[00:06:00]	Yes, lots of people think about neuroplasticity as rewiring of the brain—it's sort of the common terminology.

Neuroplasticity can take on a lot of different forms. I study neurogenesis, which is the production of entirely new nerve cells. But there's also growth of the axons and new sign formation which leads to the formation of new synapses.

The synapses are how brain cells talk to each other, and so you can have an increase in the number of synapses and you can also have an increase in the strength of the synapses. Synapses that once, you know, I heard it described as they used it to whisper to each other, the brain cells are whispering to each other and now they're shouting to each other. There's lots of different forms of neuroplasticity.
	
Chris:	I understand your research is on mice, what are you finding from that?
	
Lavinia:	What I'm finding is that, first of all I developed a specialized stroke model because I only wanted to look at the hippocampus.  Other stroke models have produced wide motor deficits and that makes it very difficult to test learning and memory. 

I then found that if I treat the mice to improve the level of ongoing neurogenesis—so neurogenesis that’s already occurring—I can change the levels of neurogenesis and the techniques that we use is voluntary exercise.  Those animals have an increased level of neurogenesis and a corresponding improvement in learning.
	
Chris:	Right. It sounds like we still have a lot to learn about this, but it's quite promising for those who have experienced some sort of brain injury.
	
Lavinia:	Very promising. I mean I'm very excited, I've dedicated my whole working life to this now.  I firmly believe that we'll be going places. How long that takes is anybody's guess.
	
Chris:	Thank you very much for talking to us. This has been a very informative, for me I know at least. That was Dr Lavinia Codd from the Queensland Brain Institute.
	
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Chris:

[00:08:00]	Neuroplasticity means that the brain is able to make new connections to work around any brain cells that have been lost. But it doesn't necessarily do this automatically; if it did, we probably would have realised this much earlier. So how do you make your brain change and grow?

To tell us this, we have on the line Dr Michelle McDonnell, Senior Lecturer in Physiotherapy Rehabilitation at the University of South Australia. She's researching how neuroplasticity works after stroke and whether exercise can give it a boost.

And in the studio we have Karen Bayly. Karen is a stroke survivor and strong advocate for improved stroke treatment and the benefits that neuroplasticity can provide. She's also been part of the SENSe project at the Florey Institute in Melbourne, which is the Study of the Effectiveness of Neurorehabilitation on Sensation.

Now, everyone’s experience of stroke is different, so I think that we should start with Karen today. Karen, could you please tell us your stroke story?
	
Karen:	Hi Chris, yes sure I can.  I was born with a heart defect and I didn't know about it.  One night when I was 44, without any warning, I went to bed one night and everything was fine and before I fell asleep I had a massive stroke.  I didn't know I’d had a massive stroke, but I was having trouble falling asleep and I didn't know why.

Fortunately, I rolled over and fell out of bed and my partner turned on the lights and found me on the floor totally paralysed in one side of my body.  Also fortunately I lived 10 minutes from a major public hospital that has a 24-hour specialist stroke team. So the ambulance came quickly, I got to hospital very quickly and they administered thrombolysis which is time-dependent.
	
	This was 2 a.m. and in the morning I was sitting up in bed in an acute stroke ward, still totally paralysed in one side of my body and having doctors coming to my bedside saying, “You'll never walk again and you'll never return to work and you'll be in rehab for six months.”

I didn't know what rehab hospitals were beyond the Betty Ford Clinic and the place Ben Cousins went. My familiarity was celebrities and drug rehabilitation.  I didn't know what “you'll be in rehab for six months” actually meant.
	
Chris:	It's worked out very well for you I can see.  How have you recovered the movement in your arm and hand?
	
Karen:
[00:10:00]	I was given a lot of therapy at an exceptionally good rehab hospital and that's not the case for all stroke survivors. Within our public hospitals they make decisions about if any or how much rehab is given to different patients. Because I was young myself and I had children who were two and three, they invested a lot of rehabilitation in me over a very long period of time.

Whilst I wasn't familiar with the terminology of neuroplasticity when I arrived at a rehab hospital, certainly I had an awareness that, whilst I was completely unable to move my left arm or hand, that there was nothing actually wrong with my arm and hand. I knew that something was wrong with my brain and it didn't know how to move my arm and hand anymore.
	
	In fact, beyond that it didn't actually even know that my arm and hand existed, and I was catching my arm on things and whacking my hand with doors and thinking well what's going on there.  I had no feeling at all, no sense of hot or cold no sense of sharp or blunt, and no movement.

People don't recover from strokes spontaneously and it's why we have physiotherapists and occupational therapists. And I think we think people get better from things quickly and when you're trying to build new connections in the brain it happens incredibly slowly.  It requires a lot of determination and a lot of patience by both the patient and the therapists over a sustained period.

For example, I spent six months in therapy doing things like... My brain didn't actually understand that my shoulder and my elbow and my wrist and my fingers all moved independently to put my hand where it needed it be to do something.  I was starting to develop the thing you frequently see with stroke survivors where the shoulder goes up and over to get the hand where it is, because the elbow and the wrist aren't engaging.

[00:12:00]	I quite literally spent six months doing therapy every day, doing things like holding a piece of tubing in my hand, and sitting and willing my wrist to move up and down. And then when I’d mastered up and down, could I move it from side-to-side. Incredibly laborious.

Because my children were pre-schoolers at the time, I started to think, you know, children spend five years learning to walk and talk, and gross motor skills and then fine motor skills, and it requires that kind of intensity to relearn those things.
	
Chris:	Michelle, does Karen's experience sound typical to you of what stroke survivors go through with their rehabilitation?
	
Michelle:	Well yes, I think when you said, “how did Karen get better?” and I’m just thinking to myself Karen must have worked really, really hard because I agree with everything that she said.

To relearn with a damaged nervous system does take a long time and a lot of effort and a lot of motivation.  Listening to Karen speak, I think that is the situation for a lot of people.

I probably need to say that there are some people whose motivation gets affected by the stroke, because the stroke can affect your movement and it can affect your feeling, but in some people it affects their thinking and memory skills as well.

And sometimes they're not quite the same person that they were and they may have mood disorder, they may suffer from depression and they may not have that strong desire to work really hard.  That's where rehab gets really challenging and trying to change someone's brain becomes really challenging.

If they are not as switched on as Karen was, and as desperate to achieve what she needed to achieve because she had people depending on her.  That's the experience that some people after stroke as well.
	
Chris:	I imagine fatigue makes it difficult too.
	
Michelle:

[00:14:00]	Absolutely. I tell people that your brain is working very hard to try and repair the damage, so it's going to make you very, very tired. But we can't wait for that tiredness to go away because we know that the fatigue persists for a really long time. 

Because everything has to be done differently now forever. Your brain is now wired up a little bit differently, so it's not going to be as effortless as it was before in some instances.

I tell people that, yes it is very tiring but you have to keep going, because that may persist for a while and really the only thing that now is showing to be of benefit for the fatigue issue is just a bit more exercise really, and more physical activity can help so that that fatigue is not so debilitating.
	
Chris:	One of the big questions that we get asked, or that a lot of people seem to ask, is whether it's possible to continue to get recovery long-term, so like in the months or years after the stroke.  What do you think of that question?
	
Michelle:	It's an emphatic yes.

In fact, there’s been so much research done into new kind of techniques that might help stroke rehabilitation.  The thinking was that if we try these new techniques on people years after their stroke, then—and if it shows a change when they're fairly stable—then this technique has got to be the right thing to do.

All sorts of things have been tried in people over six months, one year, ten years after their stroke, and almost universally if people work hard at these—and it doesn't matter what it is actually—if they work hard at this new treatment, new exercise, new whatever it is then they will show improvement.

The key thing is that some people will improve more than others, based on lots of different factors.  But can anyone improve years after their stroke? It’s an emphatic yes, but it is a lot of work.

You will need to have the right sort of exercise workout at the right intensity and practice over and over again until you kind of master that skill, but yes.  People can absolutely improve, years down the track.
	
Chris:	Karen, I believe you agree with that statement.
	
Karen:

[00:16:00]	An emphatic yes for me too, Chris.

My experience was that I spent six months as an inpatient and outpatient of a rehabilitation hospital doing movement-based occupational physiotherapy, but one of the enduring impacts of my stroke was I didn't know where my hand and arm were, my brain didn't know where they were unless I was looking at them. And I couldn't feel anything.

It was like my hand was blind. I think of it like a blind person, their eyes move but they don't see anything and my hand was the same. People were looking at me and seeing me moving my arm and hand but they were very little value to me in everyday tasks.

A couple of people had mentioned Norman Doidge’s book The Brain That Changes Itself to me. I wasn't quite up to that yet, but ultimately someone gave me a copy and I read it and it was just like, oh wow this is what I always knew.

There was one particular chapter in there, from memory maybe chapter three, and it was about his research on touch sensation with monkeys. It was before MRIs were so sophisticated and I thought wow, ten, fifteen years ago they were doing this research in monkeys. I wonder where they're up to with humans?
	
	My physiotherapist at the rehab hospital had done her doctorate under a person called Dr Leeanne Carey, who was researching exactly that: retraining touch sensation after stroke.

I live ten minutes from the Melbourne Brain Centre and I'm Googling this research and you know, it's pioneering in the whole world and it's happening ten minutes from my house.

I'm a reasonably confident person, so I emailed Leeanne and said, “Hi I'm Karen, I'm really interesting and you might like to look at my brain.”  Fortunately she did.
	
Chris:	I’m really interested to hear about that. So this is the SENSe project that you were involved in at the Florey.  What did they actually make you do to recover your sense?
	
[00:18:00]
Karen:	
OK, so it was primarily helping my brain understand feeling, so touching things in my left hand was what it was primarily about.

Upfront MRIs to have a look at what was going on in my brain. Then an intensive block of rehabilitation three times a week over a six-week period. Little plastic grids of different spacing and moving my finger over different grids and helping my brain work out differences between the grids, and also task-based training.

One of the things I wanted to be able to do was go out to a restaurant with friends and sit and eat with a knife and fork, and for people not to be able to tell that I’d had a stroke. When you hold a fork it's not a static object in your hand, you're moving the fork in your hand and you're needing feedback about what's going on.

Another thing I wanted to be able to do was do up a bra at the back, so that I could go to the gym and put my bra on and nobody would know I’d had a stroke. Ultimately I can do that on my own in a silent room if I’ve got ten minutes, but not in a crowded gym.

[00:20:00]	So, it was task-based training, MRI scan part way through the therapy and then MRI at the end of the block of therapy, and then follow-up MRI six months later to see change in the brain.

So what was happening for me is, when they did that first MRI, you mentioned fatigue before and I think fatigue is multi-dimensional. I think there's fatigue like recovery from any injury where your brain is actually healing.

But for me what was happening is, in an MRI machine if they moved my finger over these little plastic grids to see what was happening in my brain when I was touching things, what was happening is my whole brain was lighting up. Every neuro-connection in my brain was engaging, looking for some information.
	
	What was happening for me is, just trying to go through everyday life looking after myself and two children and running a household, my brain was absolutely exhausted because all of it was being used all of the time to the point that, you might sit at work and work on a report and get to the end of it and think, oh I'm really tired and go and get a cup of tea and then you're fine.  Well I wasn't going and making a cup of tea and fine, I was completely wiped out.
	
Chris:	But ultimately you then saw the brain narrowing down to certain areas, as you developed through the SENSe project?
	
Karen:	Yes, I mean something really quite remarkable happened, both in my life but also on the MRI images, that by the end of the six-week block of therapy, when they repeated the same MRI scan and did the same sensory tasks, what had happened is just one tiny bit of my brain was engaging and it was the part right next to the site of my stroke. Right next to where sensation in my left hand used to exist in my brain, my brain had found a new place to park it and it was right next to where it used to live.

More importantly, in everyday life, firstly not only did I have more information about what I was touching and so I was able to do things that I couldn't do before or do things faster or easier, I was a whole lot less fatigued because my brain wasn't working so hard.
	
Chris:	Michelle, I guess that's Karen's experience with regaining sensation. What sort of exercises specifically work to encourage neuroplasticity in movement of things like arms and legs?
	
Michelle:

[00:22:00]	It depends a lot on what you want to do. What we know about neuroplasticity is that it works best if it’s something that’s meaningful to you that you then have to work out, I think the trickiest bit is to work out the right sort of things to practise.

They’ve got to be hard, because if they're too easy they're not going to be beneficial for you. And if they're too hard, then you’re going to hate it and give up because it’s too hard. So finding the right level of exercise I think is really the key thing.

Once you've got an exercise that's difficult but not impossible, measuring it in some way and then practising it over and over and over again, and then measuring it along the way to see an improvement. Once you see that you've improved in something that matters to you, then a whole new level of motivation kicks in and it becomes easier.
	
	And then you can keep progressing. Once you've achieved that little goal, then… Maybe someone can't hardly move their arms, for example. Then you put it on a towel on the table so there’s less friction and then they can slide it one centimetre twice, and then after that, kaput, they can't do anything else.  In that instance I would get someone to make a note, so we've done one centimetre today, you've done two times and then if they keep trying and trying…

Because I tell people that even if you don't see movement happening, if you're trying to move that arm, you're exercising your brain.  And there’s been a number of different studies that show that imagining yourself move, or attempting to move, or even seeing yourself move sometimes in some of the mirror therapies, all of that is activating the majority of the same neurons in your brain as if you're actually moving.
	
	So trying to move—and again it's up to the stroke survivor to work really hard here—trying to move is exercising your brain and actually over time it will start to move a little bit and a little bit more, and a little bit more and then you can kind of keep progressing and have little steps along the way, to head toward the ultimate goal, which might be feeding yourself, or using the cutlery or something like that.  Lots of little baby steps along the way.

People really need someone to help them with that, because you need someone from outside to watch and to measure and to help progress the exercises so they're always at the appropriate level of difficulty.
	
[00:24:00]
Chris:	
Karen mention Norman Doidge's book The Brain That Changes Itself, and in that he mentions constraint-induced therapy. Is that something that people can look out for, or ask about?
	
Michelle:	Well that's a tricky one.  I've actually... So Edward Taub, the fellow who came up with that whole concept, I've met him. I went to his lab in the United States and it was quite fascinating to watch it.

He's not actually a therapist, he's a psychologist, and he did all these experiments with monkeys, like restraining the arm of the monkey and making them retrieve banana-flavoured pellets for six hours a day.

When I went there, I looked at what they did and I thought, how is this different to what we do in Australia?

A couple of things are different, people pay a lot of money to go there.  There are some places in Australia that say they are trained by Taub and that they do constraint-induced movement therapy.  They're not necessarily therapists again, and you pay a lot of money to go there. So that's one thing that's very different.
	
	He insists that you live in on-site and so again that's more money.  People have to do six hours of therapy a day. Now, that's very intense, but it's only for two weeks.

We kind of encourage people to, for example if it's their arm that’s affected and they’re going specifically for constraint-induced movement therapy, if they have the required amount of hand movement—and that's a really important thing, because you can't do this program if you have no movement in the arm—if you’ve got the required amount of lifting of your fingers and thumb and your wrist, then they put your less-affected arm in a sling or a mitt or something so you can't use it for ninety percent of the waking day.  So it forces you to use your weak arm.

[00:26:00]	It will be clumsy and you will struggle and it will be frustrating, but actually that intense period of six hours of practice, measuring, recording everything, measuring everything, every single movement is scaled and measured and written down and everything. Then forcing you to use that arm for everyday activity. And the results are really very good, whether that's early after your stroke, more so in the later stages actually, that the results are really very good.

We don't have a health care system anywhere in the world really, other than paying for these people, where we can accommodate that.

There are actually modified forms of constraint-induced movement therapy where you can go to an outpatient department three times a week. They will set you up on these exercises that are on the right level of difficulty and they will supervise and measure. Then you have to go away for two weeks at home and follow the rules, you know you've got to wear the sling for ninety percent of the waking day and all that sort of stuff.
	
	There are ways that you can do constraint-induced movement therapy in Australia, if you have a health care provider that’s familiar with it and can commit to seeing you those three times a week.  It's usually done over a longer period of time, over maybe four or six weeks or so.

So, it's an option. It's not the only option, there are plenty of other things that we can recommend for people that have been shown to change the wiring in the brain, which cause neuroplasticity, which may be more appropriate. And it’s something that, if you find the right treatment intervention that’s meaningful to someone, that they feel the benefit from, that's going to be the most beneficial thing for them.  We have to tailor our intervention to the people involved.

[00:28:00]	I don't think we have a way to change the brain passively. Now, I have looked into this, some of the research that I do is with brain stimulation. And when this first started being used in people with strokes, fifteen, twenty years ago, the idea was that people could just sit in the chair, we could zap their brain and it would change them, and we’ll make neuroplasticity happen which we can do with changing the stimulation of the brain.

But actually what we discovered over time was that was not meaningful to people. Sure, I can change the brain, I can make it more excitable or less excitable, I can do that easily. But does it actually change how someone can move their hand? No, it needs to be paired up with rehab.

I often get people asking me, can I have some brain stimulation please, for neuroplasticity to fix my brain. The first answer is, no you can't because it's not approved for therapeutic reasons in Australia. It's only an experimental study.

And even in our experimental studies, when we've just done the brain stimulation on its own, that doesn't change anything meaningful.
	
Chris:	You hear a lot of people talking about plateaus, they say they've plateaued.  That's something that I've been wondering too.  Does this mean that neuroplasticity has slowed down for them, does it keep working even through a plateau, Michelle?
	
Michelle:	I think... So some of our work has shown if we do something to the brain, if I stimulate the brain and we know it's very similar to the neuroplasticity that we see in animals, that we can see changes in the brain.

Now, they’re very variable, everyone is different and everyone will have different responses.  That's the most important thing to remember with neuroplasticity, some people will only need to practise something twenty times and they’ll just get it.  Other people will have to track practice it two hundred times.  There is a wide range of what is normal.

When we test healthy young university students in our experiments and I compare that with people who are older and people who’ve had a stroke, each group of people ... the gains become slightly smaller.  Unfortunately, as people get older there’s less capacity in the system for neuroplasticity.

[00:30:00]	I'm not saying it doesn't happen, it absolutely still happens, but to a lesser extent. And then once someone’s had a stroke they've actually lost a whole heap of the nerve cells in the brain that are important for neuroplasticity. Then it becomes harder again.

We all still have that potential for neuroplasticity until we die. We can still keep learning new things all the time, but in some people it might just take a bit longer or a bit more effort, or they may not get a full recovery or they may not see the gains as quickly as someone else can. That's something that's worthwhile keeping in mind.
	
Chris:	Karen, what do you think? If someone is, say they’re years after their stroke and they're only seeing small improvements, what advice would you have for them?
	
Karen:	I think it all really actually comes down to what the goals of the individual person are.  My goal was always full recovery, there was never any question in my mind that was the goal and it still is.

But that's not everybody's goal and I think that we actually just need to respect what it is it that the person wants to achieve in their life.  One of the things that interests me is the motivation of relatives to make their sick loved one who's had a stroke better and pushing people into recovery when actually they just want to be left alone.
	
	You know, I think often we talk about rehabilitation to an extent that somebody can move around in their own home independently, and then of course Michelle talks about the benefits of physical exercise and fresh air.  I really actually think it comes down to the individual.

I don't believe there's plateaus. I think if we're training for a marathon, obviously we have rest days.  If we're rehabilitating from stroke we might have a rest period to allow consolidation of the learning. But in terms of capacity to have ongoing recovery, I don't think there's any such thing as a plateau.  But it's about what's meaningful to each individual person.
	
Chris:	Would you agree with that, Michelle?
	
Michelle:

[00:32:00]	Yeah,  I was just about to say, I wonder if I can interrupt.

That plateau question, this has been discussed in the rehab literature, everyone pretty much agrees now that the plateau is actually plateauing off of the therapy services. And so then the therapy becomes less intense and that's why people don't necessarily see changes. They may have little changes, but it's not measured because they're not being followed up and observed.

We're really keen for people to be regularly reviewed years after their stroke, because there is no reason why people can't continue to improve.

I don’t believe that there is this plateau that you're never going to get any better. I don't believe in that at all. People can absolutely still get better, it's just a matter of practising the right things in order to see improvement in the things that matter to the individual.
	
Chris:	Great, well that sounds like a great message. I want to thank you both for talking to us.
	
Karen:	Thanks Chris. Nice talking to you, Michelle.
	
Michelle:	It's been a pleasure, thank you Karen.
	
Chris:	That was Dr Michelle McDonnell and Karen Bayly.
	
Announcer:	Setting goals is crucial to stroke recovery. Goals can be as simple as walking to the letterbox to check the mail, or bigger goals like getting back to work.

enableme has a unique tool where you and your carer or family can plan what you want to achieve., track how you are progressing and celebrate your successes. You can also connect with other people who’ve set goals similar to yours and challenge or inspire each other. You can even set up a blog to write down how you are feeling and share your own story.

And don't forget, our professionals from StrokeLine can help with personalised and confidential advice to help you grow stronger after stroke.  Visit enableme.org.au.
	
Chris:	As we've heard so far, neuroplasticity is something that you can use to continue your brain's recovery even long after a stroke.  Now for some practical advice how you can get the most out of it, we have Simone Russell, an occupational therapist and one of the health professionals that you can talk to on the National Stroke Foundation’s StrokeLine.  You can also find her answering questions online at enableme.org.au.  Welcome to the podcast, Simone.
	
Simone:	Thank you Chris, I'm happy to be here.
	
Chris:	Now we've heard that if people want to access their brain's powers of neuroplasticity it's good to have a health professional who understands it and can help them.  But where do people start with finding someone like that?
	
Simone:

[00:34:00]	Yeah, it’s a common question that we get through StrokeLine, how do I find someone who practises neuroplasticity? I would expect all health professionals going through training and keeping up continuing professional development to be aware of this term now.

If they're accessing a health professional who has experience in stroke or neurology then they are in the right place. There’s a number of different ways they can access health professionals, through either their hospital or rehab centre, through local community rehab centres.

But they can also access private therapists through the registration bodies for each health professional they can access. The other way that stroke survivors can access private therapists is through the professional bodies such as Physiotherapy Australia, Occupational Therapy Australia, Speech Therapy Australia, etc. So there’s a range of different ways they can access appropriate health professionals.
	
Chris:	On the enableme website we have links to those directories and those associations, people can look up there if they want to get some of that information.
	
Simone:	Absolutely. And if people are confused they can always call StrokeLine as well and we can direct them in the right way.
	
Chris:	We've heard a lot about this idea of having to continue these things for recovery long-term.  It is a lot of work to put in, obviously, so it sounds like it's not necessarily for everyone and people's results will vary from it.
	
Simone:	Absolutely, and I think that's one of the frustrations many stroke survivors have, that they put in the work and they find themselves quite exhausted by putting in the work and perhaps sometimes not feeling that they're making the gains that they would like.

It is a really fine balance, I think, between quality of life, also acceptance, but also that hope that comes with this concept of neuroplasticity that the brain can change itself.  So it’s really up to the individual to see what's best for them I think.

It's difficult if your whole life is basically all around rehab.  If your whole life is made up of going to rehab sessions, day in and day out, you do need a quality of life as well and to do the things you enjoy.
	
Chris:	I guess the point is to remember that the gains can be made even if they are very small gains, there still is that potential there.
	
Simone:	Absolutely.
	
Chris:	What would be your top tips then for stroke survivors who are wanting to access neuroplasticity?
	
Simone:

[00:36:00]	Yeah, sure. My top tips, if I was to select five of them, the first one would be to select meaningful activities. So participate in meaningful activities when undergoing rehabilitation, so you're more likely to be motivated, they're more likely to be stimulating for you as well.

The second tip would be, I say “the just right challenge”. Really, neuroplasticity is about targeting the rehab or the activity at a level that is challenging enough to tap into that process of neuroplasticity and rewiring the brain, but not too easy. Usually having a therapist there is highly recommended because they can give you feedback and cues and prompts to adjust the difficulty of the challenge. But over time stroke survivors can become quite good at recognising if something is too challenging or too easy. If it becomes too difficult what you see is fatigue and then the quality of the movement or the quality of the task decreases; if it's too easy then you're not challenging that process enough to tap into neuroplasticity.
	
	The third point I would make would be, if you don't use it you lose it.  I think Lavinia might have touched on this as well and it's around, sitting there not doing anything is only going to lead to deterioration so you do want to make sure you're using what you've got and working on it consistently.
	
	The fourth one that I would say is practice, practice, practice, so practice makes perfect.  It's no different than learning to ride a bike, learning to walk as a child.  The more we do something, the better at it we get and the more we can build on.  Repetition is really a key concept or key principle of neuroplasticity.

The last one would be to set meaningful goals.  So, having that sort of vision of where you want to get to is really important, not only for motivation but also for really measuring along the way your progress and to keep you motivated.

[00:38:00]	We have a fantastic section on enableme where you can set your own goals and we also offer assistance with setting goals. So you can call StrokeLine and speak to myself or my colleague Alana to help come up with goals, to come up with the action steps and also to have a little bit of a brainstorm about what some of the challenges might be that you come across with goal-setting.

There's a great function on enableme too that will help you to prompt you to remind you to review how you're going with those goals and to give you some feedback along the way, which is fantastic.
	
Chris:	I think the wonderful thing too about enableme is that you can share your goals with the rest of the community and get support from other people as well.
	
Simone:	Yeah absolutely, and I think it's really helpful for other stroke survivors to see what other goals are out there, to give them ideas, but to also support and encourage other stroke survivors on their journey.
	
Chris:	Fantastic, thank you very much. That was Simone Russell from StrokeLine and that's all we have time for on today's podcast.

Next month we will be talking about something that I'm sure is on everybody's mind: the understandable worries about the chance of a second stroke.  We'll look at how to handle those concerns and what you can do to reduce your risk.
	
Announcers:	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 and 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.

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 Ianella 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.