EnableMe Podcast episode 16 transcript – Long-term recovery

Announcer:

[00:00:30]	Welcome to the EnableMe podcast series, where we bring together stroke survivors, health professionals and researchers, providing you with practical advice to enable you on your journey to reclaim your life after stroke.

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

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

[00:01:00]	There's usually a lot of attention given to rehabilitation in the weeks and months immediately following a stroke, but recovery doesn't stop there. Many stroke survivors continue to work on their recovery and see improvement for many years. And today we want to talk about how long-term recovery works, what you can expect in terms of highs and lows, and how to make the most of it.

And to help us, we're very lucky to have with us Professor Julie Bernhardt, who is the Director of the Centre of Research Excellence in Stroke Rehabilitation and Brain Recovery, and also Head of the Stroke Division at The Florey Institute of Neuroscience and Mental Health. Thanks so much for coming and letting me read out your long title there, Julie.
	
Julie:	No, sorry about that, but I'm glad to be here. Thanks for having me.	
[00:01:30]
Chris:	
Fantastic. And on the phone we have Nadia Moffatt, who had two strokes when she was a teenager and is now a member of the Stroke Foundation’s Consumer Council. Thanks for joining us Nadia.
	
Nadia:	You’re welcome. Thank you for having me.
	
Chris:	And later on, we will also be speaking to physiotherapist Carol Pham, from StrokeLine.

But first, I'd like to start with you Nadia and with the question that we always ask our stroke survivors. Could you tell us your stroke story?
	
Nadia:
[00:02:00]	Sure. At the age of 12 I had a subarachnoid haemorrhage caused by an aneurysm that bled. So I woke up paralysed down one side. And I really found it hard because English was not my first language and I had seven years of English under my belt, and my parents were horrified in the hospital. And I couldn't understand what had happened in English, so I didn't know how I was going to translate it to them.

So I just put a smile on my face and just said, "Oh, don't worry. Everything's going to be okay." But it wasn't, everything was not okay, and I had a 99% chance of having a second haemorrhage, but they discharged me to enjoy the rest of my life.
	
[00:02:30]

[00:03:00]	Four years later I had a second haemorrhage that was larger, and they said that if they didn't operate I would die, but the surgery was so risky. There was only a 20% chance that I would survive it. I had the 9 1/2 hour brain surgery and then I was discharged back into the community with my parents, and my parents always funded and organised my private rehab.

I then went back to school, I went to university, I got a job. I worked for 32 years full-time. I've had two children and I'm now a nonna, so I've had a very rich life but the rehab never stopped. It's ongoing all the time, and if you stop, you just lose your balance and you lose your strength. So it's a lifelong commitment.
	
Chris:	Right. How has the recovery been then since your strokes? Has it been continuous improvement, or have there been ups and downs?
	
Nadia:

[00:03:30]	There's been ups and downs. And then I struggle a lot, as most other people, with depression. So, when you get depressed, you go back a little bit and then you pick yourself up again and you try a bit harder. And never ever give up. Never think that you can't do better, ‘cause you always can.
	
Chris:	Okay. That is a very positive message there about the very long term recovery. Julie, I wanted to ask you though, given that, as we've heard from Nadia that it does continue for so long, why is there such focus in the first few months after a stroke?
	
Julie:
[00:04:00]	I think, there's two reasons why there's a focus. One is traditional, which is that that's just the way our service is organised. And I think anyone who works with people with stroke will say that it's an inadequate system, in that people are often still changing but the services aren't there for them. We often describe it as the black hole, which I'm sure has been heard many times before. Patients say that to us, survivors say that to us, and we say it ourselves as clinicians. So there's that element.
	
[00:04:30]

[00:05:00]	But there is also another side to it and that is that, especially over the last ten years, as we're trying to understand more about brain recovery, the animal research is telling us that there is a window that seems to be very optimistic for getting the most that you can early. It doesn't mean it’s everything, but certainly for optimising, maybe the rate and extent of recovery. And this seems to be – certainly in animals – this seems to be anywhere from five days after stroke, and maybe even earlier, to thirty days. And then, after that, there's a really quite consistent signal that things drop off. So the potential for change drops off.

[00:05:30]	So that's why, I think, there's also this other side of it, which is the importance of trying to do as much as you can in that early phase. Now, I'll say that, but of course, the other side is that we know that some people really can't activate themselves in that time zone, it’s not possible, depending on what kind of stroke they've had.

[00:06:00]	So I agree with Nadia, you know, I think it is a lifelong process. That's the other thing that we need to make clear to people, that the ability of the brain to continue to change is well recognised now, and so you can always make some changes. We're making changes. We'll be different at the end of this session than we were before because our brain is just constantly changing. So that's the potential.
	
Chris:	Okay. So people do use the word neuroplasticity, which we've done a podcast specifically on that before and it is kind of word that, I think, gets thrown around a lot ...
	
Julie:	Yeah.
	
Chris:	... in this kind of context. But it's nothing, from what you say, it doesn't sound like it’s anything special. It's like what the brain does normally and it constantly is changing anyway.
	
Julie:

[00:06:30]

[00:07:00]

[00:07:30]	Yeah, correct. And I think that – and again, this is something that we've known as neuroscientists for a long time – but that books like The Brain That Changes Itself really brought that information into the public realm. And so that term started to be used. It's really a global term for a lot of different processes.

And what's important now, is that we start to understand what those processes are, and we try and find treatments that harness each of the particular potential processes that are at play as the brain changes. That's really the exciting direction for us right now. And that's both in that early window, as well as later. When we use terms like “chronic stroke”, whatever that term means, it just means that it's sometime after six months generally.

But I think what you're hearing is that, in that phase when that six-month window is past, there's still potential for change. We have to find the treatments that really get those physiological brain activation things happening. I'm using very plain language and not using “neuroplasticity”. We have to find things that target those specific pathways, and that's where we'll find some improvements in the future.
	
Announcer:	In your stroke recovery, the answers you need are not always there when you need them. But you can always go online to the EnableMe website and ask the health professionals at StrokeLine. You might notice some changes and not be sure if you should get them checked out. You can ask on EnableMe. Perhaps you feel your progress has plateaued and you need some help setting new goals to keep going forward. You can ask on EnableMe.
	
[00:08:00]	We're not here to replace your doctor, but we will give you the latest evidence-based information to help you live well after stroke, and you can also hear from other people in Australia's stroke community who might have similar experiences.

You can ask a question on the EnableMe website – that's enableme.org.au – by clicking on the “Ask a Health Professional” link on the homepage, or call StrokeLine on 1800 787 653.	
[00:08:30]
Chris:	
Now, we put a call out to our stroke survivor community for questions, the things they wanted to know about long-term recovery.
	
Julie:	Yep.
	
Chris:	And the questions were basically just around, “My particular impairment, will I get recovery in that?” So we had people bring up things like balance, a couple of people weakness, numbness, spasticity, fatigue, and vision was another one. Are all these things able to get recovery, or is there a limit on certain…?
	
Julie:
[00:09:00]	There are… I believe that there's potential for recovery in all domains. What I can tell you from a research perspective, is that we know a lot more about motor recovery and sensory recovery. So that's just because that's where the researchers have typically researched. Things like your thinking ability, your vision, things like fatigue, which we recognise as being really problematic for people, just have not been as well researched and so we can't be as clear.
	
[00:09:30]

	We do know that there could be quite distinct time courses for recovery for different parts of a person and different domains, as we would call it. So, motor recovery might be really happening early and may taper off, still with potential to improve. Speech and language may not really start to kick off and recover until later.
	
[00:10:00]

[00:10:30]	And, I think what I want people to understand is that, part of the challenge that we have is both the complexity of stroke, because there's so many things affected. We have a problem with not having enough capacity of researchers working in recovery and that has held us back.

So that's why the Centre of Research Excellence was started, to try and get a bit of a core of people interested in this area. And I think, you've got to have those interested people. They've got to want to really work with the consumers and study those areas. And so, we're really in very early days in a lot of our understanding in these areas.
	
Chris:	Look, it sounds like with the different factors, as you said there's possibly different time frames involved. Nadia, is that something that is your experience as well? Did you find that different things recovered at a different speed?
	
Nadia:	Yes, and some things didn't recover at all, yes.
	
Chris:	Okay. So what kind of things, I guess, were quicker to recover?
	
Nadia:
[00:11:00]

[00:11:30]	I started walking again pretty quickly. My mum hired a heated pool and put me in it. And so, within a few months I started walking again. But my arm was so slow and it's still not extremely useful, and my vision hasn't really recovered. The fatigue is a lifelong thing, I think. It's something you never quite grapple, so you just manage it the best way you can.

So I guess for everybody it would be different. But, you know, I always say to people, while you're alive there's always hope and you keep trying things, and some things will work and some things won't, but it doesn't matter cause you're still here and you're still battling on.
	
Chris:	Fantastic.
	
Nadia:	And you're just achieving things differently.
	
Chris:	Now, I guess something else that I realise too in speed of recovery is this concept of the plateau that a lot of people talk about. Julie, can you tell us, do we know why that might happen? That it sort of ... things stop for a while and then continue?	
[00:12:00]
Julie:	
This is a really interesting area, because when you look at big populations of people and you group them all together, and then you measure their recovery over time, you do see a plateau and the plateau happens around about three to six months. And medical wisdom up, until about five, ten years ago, and we're still battling against it actually, was that that's it. That's the plateau. We've seen it in large groups of people. You're not going to recover much beyond that.

[00:12:30]

[00:13:00]	And so, at a population level, it does seem that there is this sort of rapid period, where people improve and then things start to slow down. But as Nadia and others will say, that you can have bursts of change. And that's actually very interesting, and it speaks to the potential for some kind of mechanism we don't understand.

So the answer is, we don't understand why some people may then kick off into a new period of optimal, whatever it is, the environment that's in their brain and in their whole system and probably surrounding them, that somehow kicks them into a new zone.
	
	But I think what Nadia described earlier is engaging in therapy later and still being able to see significant change, and we know that that happens. So, we don't understand what happens with the recovery process at the human level, as much as we understand at the biological level...
	
Chris:	Okay.	
[00:13:30]
Julie:	
...with earlier models, like with rodents, and that's got to change. That's really old school.
	
Nadia:	Julie?
	
Julie:	Yes, Nadia.
	
Nadia:	Do you think it might have something to do with, because I don't know about other stroke survivors, but I've definitely got… My awareness has been affected, and sometimes it just takes you a lot of time and repetition to become aware of something. Do you think, sometimes, by the time that your body/brain processes the awareness of something and then starts to deal with it, maybe that's one of the lags?
	
Julie:
[00:14:00]

[00:14:30]	Yeah, I think that's a really good point. And what you're describing as awareness, we might describe even as attention, but it may be more than attention. But we do see changes.

There's some really interesting work with Leeanne Carey's group, who are looking at sensory changes and seeing that you can really make significant change with doing a targeted training programme. There's lots of other examples as well. But it could be that you're in a phase where you are able to really focus in on something, and maybe you weren't able to do that before.
	
Nadia:	Yep, yep. That's what I'm thinking.
	
Julie:	Yeah, and I do think that people experience that. They've certainly described that to me as one of the really interesting, different things that happen as they move through their recovery process.
	
Nadia:	Oh, good. It's not just me then?
	
Julie:	No, not at all.
	
Chris:

[00:15:00]	It sounds like what you're saying, Julie, there are a lot of things we don't know about long-term recovery in this. What are the kind of things that you're interested in researching at the Centre for Research Excellence?
	
Julie:

[00:15:30]	Everything! Look, I think stroke recovery is really the absolute next most important thing we should be looking at in this field of stroke medicine. Though we’ve had a lot of attention, as I've no doubt you've reported on this segment before about the miraculous improvements in acute treatments. And they'll apply and they are amazing, and they're fantastic. But, they apply to about ten percent of people. So, if you think of recovery as 90%, the other 90%, and how diverse it is, there's a lot to study.

[00:16:00]	So, we are taking a targeted approach in that we're focusing on a couple of key areas at this point in time. Fatigue is one of them, and there are some trials that are running now with particular medications. We're also working a lot with the basic scientists to look at the biology of recovery. So, trying to understand more about what actually happens in the brain. And we're doing a number of clinical trials around different types of problems that people have.
	
	We're also working with consumers about what they think are important areas for research. And we've been doing quite a bit of work with young stroke survivors, ‘cause they're a bit of a neglected group, Nadia, as no doubt you experienced when you were young.
	
Nadia:
[00:16:30]	Yep.	
Julie:	And they really do have quite distinct needs. And one of the big gaps that they talk about is a lack of attention to their psychological needs, and that's around adjustment, depression.

Look, I think, we are a small group. We are trying to build capacity in the field. And we're trying to get people excited about the potential for stroke recovery, because we need a lot more people working in this area.
	
Chris:	And Nadia, I understand you've been involved in a few research projects yourself.
	
Nadia:	I have.	
[00:17:00]
Chris:	
Yeah. What kind of things have you been involved with?
	
Nadia:

[00:17:30]	Well, I was involved in a Lokomat research project. The Lokomat is a machine that trains you to... teaches you to walk. So it’s computer arms that are attached to your body, and the computer moves your body and walks for you. So you learn, you feel the feeling of walking properly, and it’s really amazing. You can actually get people that are in wheelchairs and get them walking with assistance.

I was also involved in the Botox clinical research trial in South Australia. So they’re two that popped into my mind, off the top of my head.
	
Chris:	Is this something that you would recommend to other stroke survivors, is looking to see what research projects they can get involved in?
	
Nadia:	Absolutely. I always think, you never know until you try something. And what have you got to lose?
	
Chris:	Now, we're going to have to wrap up shortly. Do you have any other advice for stroke survivors, Nadia?
	
Nadia:
[00:18:00]	Probably, it's best if you could avoid having a stroke in the first place. You know, things like watch your blood pressure, watch what you eat, and all those sorts of things. And then look at the symptoms: face, arms, speech, and [time], and get people help as quickly as possible, because you're better off avoiding having one, believe me. It’s hard work.
	
Chris:	That's a great...
	
Nadia:	But I appreciate that there's people like Julie that are so committed to helping the cause.
	
Julie:	Thanks.
	
Chris:
[00:18:30]
	I think we all appreciate, yeah, Julie's work. And Julie, do you have any other advice that you would give stroke survivors, as well?	
Julie:

[00:19:00]	I'm not going to offer advice, I'm going to offer hope. I think we're at a point where we really are heading in a direction that we've never headed in before. We now have international collaboration around stroke recovery. We're trying to come up with the type of research that we need to really help understand recovery. And understanding recovery will be what we need to do to kick into a new era of treatments. And so, I think, watch this space. It's a really exciting space to work in, and I think, we just need to keep very engaged with consumers as well, throughout this process and through Stroke Foundation.
	
Chris:	Excellent. Well, thank you very much, Julie, and thank you too, Nadia. Thank you both for coming in and sharing your experience and knowledge with us.
	
	That was stroke survivor Nadia Moffatt and Professor Julie Bernhardt.
	
Announcer:

[00:19:30]	If you're a family member or friend of someone that has had a stroke, you know that it's just the start of a long journey to reclaim their life. As one of Australia's biggest killers and the leading cause of adult disability, we still have a long way to go until we can say we have beaten it. At the Stroke Foundation, we draw our inspiration from the determination and persistence of stroke survivors, and that's why we work every day to prevent, treat, and beat stroke.

[00:20:00]	There are many ways you can join us to fight stroke, including volunteering your time, telling your story for us to share with the media, speaking up and approaching your local member of parliament with our advocacy team, getting your workplace or community group behind an event like National Stroke Week or Stride for Stroke, running a fundraiser, donating, or leaving a lasting gift in your will, or just by sharing the F.A.S.T. message with the people around you, so all Australians will know how to recognise a stroke and act F.A.S.T.

Join the Fight Stroke team. Find out more at strokefoundation.org.au.
	
Chris:	Finally today, we have Carol Pham. Carol is a physiotherapist who you can hear on the Stroke Foundation’s StrokeLine. Thanks for coming in, Carol.
	
Carol:	Thanks for having me.	
[00:20:30]
Chris:	
Now, you would speak to a lot of stroke survivors on StrokeLine and on the EnableMe website. How many people would you say are in this long-term phase of their recovery?
	
Carol:

[00:21:00]	We speak to a lot of people, sort of longer term post their stroke. People call us or contact us through EnableMe and StrokeLine. They might be months down the track or even many years down the track. And they often give us a call because they might be thinking about stepping back into new activities. They might be thinking about getting back into working life, volunteer roles, thinking about returning back to driving. And what they're looking for is a little bit of guidance from us as to how best to tackle that.

They may also reach out to us, if they've reached a hurdle in their recovery, and they're wanting a bit of advice on how they can get back on track, and overcome those hurdles, and what help is available to them.	
[00:21:30]
Chris:	
Okay. And do you see people then, continue to go on to have this ongoing recovery, as we've discussed?
	
Carol:

[00:22:00]

[00:22:30]	Yes, absolutely. So, just as Nadia has described, depending on what stage you're at with your recovery, there are certainly changes that you can see along the journey. So people who have suffered a severe stroke may take longer or need more time with their recovery.

While every stroke survivor has different challenges ahead of them, recovery in the long-term can be, I guess, assisted by consistent and constant work. So, the words that Nadia described around rehab, never stopping, being a lifelong commitment, and sometimes coming across hurdles and needing to pick herself up, and keep on going, those are common stories that we often hear. And stroke survivors share their stories with us and they achieve fantastic goals, many years down the track such as engaging in study, getting back to work, and telling us stories about how they ran their first marathon years after their stroke.

So certainly, long-term recovery is possible. A lot of it is about being persistent, having a lot of self-belief, and having a can-do attitude, and I guess the willingness to work hard and overcome some of the challenges along the way.
	
Chris:
[00:23:00]	Great. Okay, well given that, what would be your top tips that you would give to stroke survivors who are trying to continue their recovery long-term?
	
Carol:	One of the biggest tips that I can give out to stroke survivors is to set yourself some goals and make a plan to achieve them. On EnableMe, our website, we have a framework to help stroke survivors create their goals, set a timeframe for their goals, and think about what steps they might need to take to achieve them. And also, consider the obstacles that they may have to overcome along the way.

[00:23:30]	It's always been helpful for those who can surround yourself with a supportive network. So, involve your family and friends in the community, if you can. You might like to connect with other like-minded people. So getting in contact with a local stroke support group and sharing stories, and sharing tips and experiences with each other to help achieve your goals, is often quite helpful.

[00:24:00]	Also, consider health professionals. Your GP is an excellent contact point that you can talk to about your goals. And they can often link you into rehabilitation options in the community. So, for your goals, you might need physiotherapy, occupational therapy, speech therapy, psychology support. There's a whole array of resources that you can tap into in the community. And having had that conversation with your GP and working out whether local private or local community publicly funded community rehabilitation programs, can help you along the way, is often helpful as well.
	
Chris:
[00:24:30]	Yeah. Great. And there is, I believe, that on EnableMe there is information on how to find these kinds of rehabilitation programs and also how to find stroke support groups, and that kind of thing.
	
Carol:	Absolutely. And hop on there, if you get a chance, because you'll get to read some of the stories of other stroke survivors, and some of the goals that others set themselves further down the track as well. So it’s quite inspiring.
	
Chris:

[00:25:00]	Fantastic. Well, thank you very much for those tips, Carol. Now remember, if you do want to speak to a health professional like Carol, you can call StrokeLine on 1800 787 653. That's 1800 STROKE. Or you can ask your question through EnableMe and get a response from health professionals and also from other stroke survivors who'll share their experience too.
	
	And that's all we have time for today. If you like what you've heard, please take the time to give us a good rating and a review on iTunes, as that will help other people to find the podcast. Thanks again to our guests, Nadia Moffatt, Professor Julie Bernhardt and Carol Pham.	
[00:25:30]
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 enableme.org.au. It's free to sign up and you can talk with thousands of other stroke survivors, carers, and supporters. You can also suggest a topic, or provide feedback on this podcast.

EnableMe has qualified health professionals from StrokeLine who can answer your questions and give evidence-based advice. The advice given here is general in nature and you should discuss your own personal needs and circumstances with your healthcare professionals.	
[00:26:00]	
The music in this podcast is “Signs” by stroke survivor Antonio Iannella and his band The Lion Tamers. It was recorded at Antonio's studio, which you can find out more about at facebook.com/studiofour99.
	
	This EnableMe podcast series is produced by the Stroke Foundation in Australia, working to prevent, treat, and beat stroke. See strokefoundation.org.au.