Exercise physiology (Smashing it after stroke)

This podcast was created and is hosted by Paul Burns, a young survivor of stroke. This podcast series is part of Stroke Foundation’s Young Stroke Project.

Special episode - Smashing it after stroke

Season 2 Episode 2, 15 December 2023 (Duration: 0:59:50)

Host: Paul Burns

Paul is back for a second season, this time talking to health professionals and industry leaders. Paul and his guests dive into current thinking on stroke recovery within their respective fields, what’s out there for those with invisible injuries and as usual, he picks up some tips and tricks along the way.

In episode two, Paul chats to senior exercise physiologist Mark Simpson. Exercise physiology can help with strategies for self-managing chronic or complex conditions.

Mark and Paul dive into managing fatigue after stroke, looking at pacing concepts and how to break out of the boom bust cycle.

Transcript

Announcer: The information provided in this podcast is general in nature and is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your doctor or other qualified medical professional.

Paul: Hi there. My name is Paul Burns and I'm a young stroke survivor and this season of smashing it off the stroke, I'm chatting with health professionals and industry leaders.

We dive into current thinking on stroke recovery within their respective fields. What's out there for those with invisible injuries and as usual, pick up some tips and tricks along the way.

Today on the podcast, I chat with Mark Simpson from PACE Health Management. Mark is a senior exercise physiologist and he has an absolute passion for the industry. He has a keen interest in educating clients and support teams to help them manage their conditions, work towards their goals and create real, sustainable change. We dive into pacing concepts, touch upon spoon theory, which is totally worth a Google and talk about the importance of maintainable approaches to physical exercise in not just rehab, but in everyday life.

So please enjoy this chat I had with Mark.

Thanks for making the time to come on to do this. I know all of you guys in Allied Health Medical, you’re just flat stick at the moment. So the fact that you could squeeze me in for a chat I really do appreciate it.

Mark: It's good, I’m excited.

Paul: Yeah, cool. Exercise physiology is being a real point of interest for me, because it was one of the therapies that I found by accident.

It was never recommended to me for a few reasons, and it's been a game changer for me. It's been fantastic. So I guess my first question is what is exercise physiology? And how is it different to other types of rehab?

Mark: This is good you’re starting with a tough question. I suppose there's a long answer and a short answer for “what is exercise physiology?”

It's still a relatively young profession, so it's only been around for about 20 years, give or take. It was first introduced into the Allied Health circle to essentially look at helping people to better self-manage chronic or complex conditions. So we have obviously really good fields such as physiotherapy who are there specifically for acute and subacute conditions with some input into complex chronic. Exercise physiology is there to really assist with the development of self-management strategies, facilitating behaviour change and look at the big picture.

So essentially what it was first put into the Allied Health circle for was to try and decrease the chronic disease burden. So specifically for obesity, type 2 diabetes, etc. And then if we think of who's going to benefit from the development of an exercise program, there are not many people that don't fit that brief.

It can be quite complimentary in nature. So most exercise physiologist will work as part of a team. So they might work in with a dietician, a diabetes educator and endocrinologists, a musculoskeletal physiotherapist, neurological physiotherapist and occupational therapists, any and everyone. So that if we think of taking a person-centred care, we want that person to be actively engaged in their treatment or their care or their goals.

So a large part of our role is looking at that person, working towards their goals and sitting in with other treatment modalities.

Paul: With regards to like other treatments, like we've all come across physio for sitting at a desk too long. You know, occupational therapy. Where do you guys stop and start? Is it really just does depend on the patient? I mean, I'm assuming there's overlap.

Mark: I think we'll probably find that most of the questions we get today we can probably answer as it depends. Where rehabilitation is really pulling into in the last five years, is taking a person-centred approach as opposed to a patient-centred approach, as opposed to a condition-centred approach.

So if we sort of rewind 20 years ago, you know, you'd come in and this person has A, B and C, and their name happens to be Bob. Whereas now where we come at it is this is Bob, Bob's been dealt A, B and C, these are the goals that they're working towards. So yes, it depends because we're working with a person in front of us.

So we might have someone that's already really actively engaged and has some really specific goals that they want to pull towards. We might have someone that has a really great team around them and everyone has a clear outline of what their roles and responsibilities are. We might be down the other end of the spectrum where someone's just trying to put all the pieces together.

So sometimes we play a bit of an educator role, sometimes introducing the other health professionals. Sometimes we're trying to facilitate behaviour change or get that person a little bit more involved in their own treatment so that they can pull towards the goals that are important to them and develop really good long-term outcomes. But that person's needs is going to be different as time goes on and each person that we see throughout the day, their needs are going to be different.

So as a general rule, exercise physiology is looking at improving that person's physical capacity and doing it in a way that they can be actively involved in treatment. So lots and lots of different ways to do that.

Paul: Yeah. So I guess is it sort of fair to say that, you know, some modalities out there do by their very nature, you know, for example, we go to say someone to fix a broken leg and they fix your broken leg.

That might be a crude example. But exercise physiology really does take that whole person - not just their injuries and their goals - but their life situation into account to tailor something that's specific to them. Is that a fair statement?

Mark: Yeah, that's absolutely fair statement. But also prefacing that with, I think where Allied Health in general has really significantly improved in the last 5 to 10 years is that all clinicians, regardless of ‘chiro’, ‘physio’, OT, communication and collaboration is significantly better than it was 10, 15, 20 years ago.

The Allied Health used to be quite prescriptive when now it is a lot more collaborative. So any good clinician, regardless of their title or their discipline I think is looking at that person as opposed to the condition and working with that person and their support team to pull closer towards their goals.

If we had to give a one line definition of what an exercise physiologist is, I used to tell people we're a cross between a physio and a personal trainer. In that our role is to have a good understanding of what's going on with that person's body, with that person's life, and then look at how we put an exercise program in place to pull towards their goals.

And I think the advantage that we have over other fields is that our title includes the word exercise. So if you have an appointment with an exercise physiologist, you're coming in and it's sort of pre bias with the understanding that there's going to be some form of exercise, physical activity, active therapy, in which you have to play a role. Where I think physiotherapists have a little bit of a disadvantage when people walk into their rooms because people are pre biased that they are expecting some form of passive therapy or potentially still a fix me approach, which a good physio, you know, has the skillset to work with that person to get them actively engaged.

But I think we have an advantage there in that the person's coming, coming to us ready to actively be involved.

Paul: So do exercise physiologists, do you see people that aren't necessarily coming to you with injuries as well, like people that are just looking to increase their capacity? You know, do you train athletes and stuff as well?

Mark: Yeah. So because we're in private practice as well, we have quite a wide scope of clients that we work with.

So we do a lot of stuff in the disability space these days. So everything from paediatrics all the way up, we do a lot in the rehabilitation field, so we think of things like lower back pain, knee pain, shoulder pain. More sort of subacute and chronic - so we don't really see torn hamstrings and disc bulge, but we might see longer term back pain or knee pain with things like osteoarthritis or post rehab interventions, etc. We do a lot in the health and wellbeing space and when we say health and wellbeing, that's obviously an umbrella term so that anyone that wants to improve their health and wellbeing, decrease risk of things like chronic diseases or better manage chronic diseases.

So if we use metabolic health as an example, working with someone with type-2 diabetes or pre-diabetes, that needs to make some positive lifestyle change to decrease weight, decrease waist girth, improve insulin sensitivity, maybe increase lean muscle mass, etc. so that they decrease risk of cardiovascular disease or other complications down the track.

So it’s quite broad, the scope. And then we're doing some stuff with, you know, with young kids that might have Sever’s or developmental delay. And then we also do stuff with general pop that might be working towards sporting goals or getting back into exercise. And whilst the conditions that we work with can be highly varied, again, the common denominator is that we're working with the person in front of us.

So looking at, you know, where are they now, where are they trying to get to? What are the barriers that might be in place and what are the enablers or strategies that we can put in place to help get them there? And those are really the things that we spend our time on these days. More so then this is the silver bullet exercise that's going to solve everything.

Paul: That one thing that your doctor refuses to tell you it's not really in your bag of...

Mark: Exactly. Which I think everyone that we speak to across this wide scope of practice, that's the common thing that we're talking about with people, is that something's going to be better than nothing when it comes to exercise physical activity movement, and then something more is going to be better than something.

I reckon I’d probably say those lines ten times a day. It takes a long time to sort of reinforce this with people. Funnily enough, you'd expect it to be trying to get someone to do more. A lot of the time what we find is by rebranding that all or nothing approach to just start with something that makes it achievable.

The other one we say a lot is getting to the start line is more important than getting to the finish line. So we start to see improvements from as little as 6 minutes of movement and we're talking significant improvement. So blood pressure, blood glucose levels, change in neurotransmitter release, the benefits to the mental health, mood, libido, fatigue, etc. We see these from as little as 6 minutes.

So if we can get someone going from doing nothing to a 6 minute walk each morning, you know, that's our first outcome ticked off. And then we're normally trying to pull people towards the national physical activity guidelines of 160 to 300 minutes per week of aerobic based exercise. So moderate intensity which might be walking for someone, or bike riding or swimming, and then the inclusion of resistance based exercise 2 to 4 times a week.

And then once we sort of have people on board and willing to be in the driver's seat or actively engaged in their rehabilitation, then we can sort of break it down a little bit further to so where are the deficits or what are the things that that person's working towards.

That's sort of the general direction that we're heading and then things that pop up along the way. We then work in with other people in the Allied Health team or that person or their support team.

Paul: And I think that's such a different approach too, I mean, I had to learn the lessons the hard way is I'm a bit of a.. we’ll probably talk about boom bust in a bit I'd imagine. But yeah, you know, there's a lot of stuff out there on social media and I'm not here to throw anybody under the bus.

But you know, there is a culture out there of, you know, go hard, go home. And I’ve had to learn the hard way that a little and often as a stroke survivor is much more effective than destroying yourself three times a week and then hating your life. So it sounds like that's really your sort of approach, well one of them.

Mark: Yeah, I think not just exercise physiology, but again, you know, good clinicians can span across different disciplines or different fields. A lot of the concepts that we borrow from are not only used in EP. So if we link back to the boom bust or pacing concept, we can probably just touch on that. So people have a good understanding of that.

What most people do, if we think of a symptom like fatigue, which is one of our most under-reported symptoms. With fatigue, where we like to start is having a good understanding of what aggravates and what eases our fatigue symptoms. There's a few different analogies we can use for aggravators and eases. My favourite one is pouring fuel or pouring water on the fire.

So the fire's already there. We know that fatigue is a symptom. We're not looking to magically fix it or cure it. We're looking to better manage it. The sooner we can sort of outline what pours fuel on the flame and makes it worse. Obviously then the first bit of advice is to stop pouring fuel on the flame.

Secondly, if we can find some things that can dampen that flame, so our eases, then we can try load up with those. So for a lot of people, aggravators or putting fuel on fire would be stress. And stress can come in in all shapes and sizes and forms, but stress can be things like financial stress, emotional stress, physical stress. It can be cognitive load, it can be changes to routine and structure.

So it's not necessarily how stressed do you feel as opposed to how many stressors are you putting onto your body? We also have different abilities to deal with stress depending on on the day, so we know that sleep and stress are closely linked. So for a lot of people making improvements to their sleep hygiene or to their sleeping habits or to the quality and quantity of sleep can help with fatigue because of the ability to deal with stress and because of the ability to deal with things like their nutritional intake.

So I think sleep in the last 10 years, we could probably talk about that by itself, you know, for another 4 hours. But let's just put a pin in the importance of sleep there, other than if it's not right, it's absolutely worth looking into it. If we can identify what those stresses or those aggravators, or those ‘fuel on the fire’ and then look at ways to mitigate those, then we can buffer that up with one of those eases or one of those things that can pour water onto the fire.

And if we think about a raging fire, it's not a once and done. It's small, concerted efforts. Much like with our exercise, if we talk about that as a little and often approach. We really want to take that to our whole lifestyle. So again, just diving into the boom and bust as a concept, there's a few different ways that we can explain boom bust, I know you're a big fan of the Spoon Theory, which people can look up on YouTube and hear the story of Spoons, or you can link back to it in this podcast if you want.

I like using a financial analogy for some people, if they’re quite analytical. So if we have $100 to spend at the start of the day and we've spent $110. That $10 we're borrowing from tomorrow, which is going to be owed with a really high interest rate. There are a number of factors which are going to decide how much money we have at the start of the day, so it's not a 100 bucks every day.

Some days might be $160, some days we might be $25. The other thing we know to be true with fatigue and to be true with stress, is that our spend for certain activities can increase. So if we think of something like picking the kids up from school, if we’re feeling calm and relaxed, that might be a $5 job.

If we’re leading into that activity in a heightened state of stress, anxiety, fatigue that might cost us 20 bucks out of that bank balance. So fatigue and boom bust is one of those really hard patterns or hard habits to break. The other analogy, which we use sometimes is, is that a football? So we think about the grand final on the weekends.

No one can perform for a whole game of football without little breaks. So we can use the interchanges, we can use quarter time, we can use halftime. But those amazing performances are achieved because of the recovery times and our life is much the same. So if we look at how our top athletes perform, again if we use the football example, they have periods of work and they have periods of rest.

So if we have fatigue present, it makes sense that after a period of work we should have a period of rest. So with boom bust, normally people like to play through that period of rest. So whether it's a direct result of Instagram and TikTok culture, with go hard or go home, whether it's because of pre-conceived beliefs, whether it's because of peer pressure, whether it's because of real or perceived obligations from family friends work.

When we take away those periods of rest, what happens is we get to the end of our boom cycle and it's followed abruptly by a period of bust. So the body needs rest, either we give it a chance to rest and recover or it will take it. And when it takes it, it takes it plus some more.

Paul: and at the least convenient time for you.

Mark: That's exactly right. So we try and break boom bust cycles by applying the pacing concept. And the pacing concept is just recognising our periods of work and recognising those tasks which take a little bit more juice than others, and then planning periods of rest or periods of recovery. And that's like we talked about stress isn't just stress, but it can come in many forms which can be individual to the individual or unique to the individual I should say.

There's different forms of rest and recovery also. So some people might find social activities exhausting and that might be an aggravator. So other people might find social activities are exactly what they need to fill their cup. We can have creative rest. So if we think of things like those adult colouring books, which can be a form of meditation.

We can have absolute rest, so use of naps, use of sleep. We can have meditation, we can practice gratefulness, anything that draws us into a state of parasympathetic activity, which is our rest, digest and recover system of nervous system, as opposed to sympathetic activity, which is our fight, flight or freeze system.

So when we're talking about being in a state of sympathetic nervous activity, our body has some really specific physiological changes that happen when we're in sympathetic nervous activity.

So specifically increased rate, increased blood pressure, increased adrenaline release, increased breathing rate, which is helpful in the short term because it gets us prepared for the activity that we're about to do. So if we were running away from a dinosaur or stepping into the MCG in front of 100,000 people, we want to be ready to perform. But then we also want to be able to come back down the other side and come back to the state of parasympathetic nervous activity, which is rest, digest and recover, which helps lower our heart rate, lower blood pressure, clear adrenaline, and come back to that state where our body can rest, digest, recover.

Paul: I thought I had a relative handle on fatigue and things like that, but you've given me a little bit more to go away and think about after this podcast. When you have people come through the door with cognitive injuries. For example, or mood-based issues or your memory issues, how do you approach those? Because from my personal experience, when someone asks me to do something and I'm like, yeah, absolutely super keen for it and then get sidetracked by a packet of yogurt in my fridge.

That must be really challenging to try to get people to make those changes when they're having these issues. How do you approach it?

Mark: I think there's a few different ways that we can look at this. And the first thing I'm going to preface this with is again, being able to communicate and build rapport and trust and have empathy is not specific to exercise physiology.

Every good clinician, and not just in Allied Health, but probably every good operator across most industries is going to have really good interpersonal skills. So if we think of something like a salesman. Sales and marketing have very good interpersonal skills but they’re steering towards getting you to buy a product. The product that we're selling is lifestyle change and increased movement.

So, the second part of that I think is having a good understanding of where our other skillset starts and finishes, which is obviously exercise prescription. So exercise is amazing in how much it can do for people. So there's a really good quote that if exercise was a pill that it would be the most widely prescribed drug on the market.

So when we're talking about that, we're thinking about what's the condition that this person is presenting with, what are the goals they're trying to work towards. But then we’re also thinking in the back of the mind, if we take no intervention, what's going to happen? So what are the likely progressions of this condition and this disease? And what are the likely secondary complications?

So if we have a broken leg and we can’t exercise for three months, let's say, then we'd expect to have a decrease in lean muscle mass, probably increase in fat stores, maybe our lipid profile changes. Maybe we take a step closer towards something like type-2 diabetes or heart disease. If we drag that out over the next, you know, 6, 12, 25 years by taking no action, we know that we're increasing risk of co-morbidities for other diseases significantly.

So if nothing else changes, but we're able to maintain national physical activity guidelines, that's a really good step in the right direction. So you might come in and say, worst case, there's nothing that we can do here, but here's all the other stuff that we can do to link towards those other goals.

And I think that's a really good point just to circle back to, in that maintenance is a really powerful goal to have. We know that with no intervention, the human body gets worse every year, so loss of muscle mass, loss of function, increased risk of things like falls and trips. If we're on a steady decline as soon as we finish puberty, if we can maintain bone mineral density, maintain lean muscle mass to the best of our ability, maintain function, decrease risk of other co-morbidities, that's a really good starting point.

It's also something that's not openly discussed in most health professionals, most health professionals, including ‘medicos’ - we look at the problem in front of us. So being able to zoom out and look at the person over the journey, I think is a really good starting point. The other thing that's really important to consider is where our scope starts and ends.

So what can we do for this person? And what can’t we? Who else needs to be part of this care team - Is it an occupational therapist who can help with emotional regulation, who can help with house notification? So you can set us up with some ergonomic aids or you could set us up with assistive technology. How is that going to help to improve that person's life?

Is it input from a psychologist who can help with counselling? If that person is not open to the interventions that are being suggested, you know, are we just banging our head up against a brick wall and we're only going to be able to do so much in terms of motivational interviewing and facilitating behaviour change before we reach the end of our scope.

So having a really good team around us is really important. One of the analogies I use for that with people is thinking about spokes on a wheel. If we've only got a couple of spokes, that's a pretty weak wheel. So if we can build that out with OTs, dietetics, neurological physiotherapy, occupational therapy, psychology, podiatry, friends, family, support workers, cleaners to deload some of the stress. And that's just going to add more and more spokes to the wheel.

Paul: So do you find yourself sometimes becoming that hub almost and that sort of in in some respects, I dare say it's different for every case as we sort of spoke about.

Mark: In this analogy, the person is the hub. We’re the bike mechanic, we're just throwing on one more spoke and then we’re saying why don’t you think about these spokes? Why don't you think about that stroke?

Paul: I love that analogy.

Mark: I think across Allied Health and probably broader healthcare in general, it's not uncommon to put on a couple of different hats. Yeah, but the best clinicians know when it's time to take off that hat and refer on. So getting really good at what are the flags that we might be seeing for this person, that would actually really benefit from some help from other professionals as well.

And if we look at that, a lot of people that we come across might not believe they need those services. Sometimes it's really hard to recognise what your own personal needs are, especially when we're thinking about things like cognitive issues or mental health issues. Not many people put their hand up and say, I'm having depression like symptoms.

Normally it's the people around them that recognise them. And similar to the cognitive issues, we don't always know when we're dropping the ball.

Paul: Yes, that's true.

Mark: So having a good support team around us, having that support team involved in our treatment is really important as well. Otherwise, sometimes it can be a case of Chinese whispers. So if we're trying to explain something as complex as the pacing concept or the boom and bust cycle after one discussion, I learned at the time how that comes across for the partner or the person at home is, I’ve just been told I need to rest more or need to do less.

Or they're overdoing it. The fatigue is my fault. None of these statements are true, but it's easy for these things to be misinterpreted. Where if we have the support team in the room with us, especially in the early days, it's much easier to make sure that the right message gets across and therefore the right strategy gets in place.

Linking back to that pacing concept, it's a really common misconception that pacing is about doing less. We're not taking things away, what we're doing is adding in recovery and opportunities to rest, to allow us to do all the stuff that we want to do. So there'll be some cases when we go, you know what, I'm happy to bust because I want to go to my friend's wedding.

I know that it's going to be a big day and a big night, but then I'm not going to do anything for the rest of the weekend because it's going to take me two days to recover. And that's okay. That's time well spent and I'm happy with that. And I think as we work through pacing concept or boom bust cycles, what people tend to get better at is identifying those aggravators and then identifying the different things that aggravate the aggravators.

So if I borrow one of your examples, you know, if it costs ten bucks to drive to archery, shoot for a half an hour and drive back, if we drive in the rain, if there's a school group there, if there's lots of other things happening at the same time, that's going to aggravate an aggravator. Probably the final thing that I just want to touch on that point is we said it in that opening sentence that something is better than nothing and something more is better than something.

So if we're not necessarily looking at a curated or a fixed approach, what we are looking at is a management approach. So with cognitive issues, what are the things that are most impacted on a day-to-day life, how do we mitigate those? Is this something that needs to be approved at an individual level or is it something that we can outsource out?

You know, I have trouble preparing meals. I have trouble going to the grocery store. I have trouble remembering all the stuff. Can we lean on our support workers to have the groceries delivered? Can we have meal plans done for us? Do we need to improve those things or can we outsource and put strategies in around there? We have a lot of conversations with people with, you know, discussions around support services like cleaning.

And people might say, I'm confident I can clean my house, that's not a problem. But normally what we'd find is they can complete that task, but then they need to have rest and recovery, so they miss out on doing the things that I enjoy. So yes, we can complete that task, but we can also remove it and spend that time doing the things that you enjoy.

Paul: I had that exact experience very early in my recovery because, you know, I wanted to get back to mowing my lawns because they were my lawns and I was going to mow them. And, you know, I wasn’t the most reasonable person very early in my recovery. And I stumbled across this thing and I may paraphrase this really badly, but I think the concept stands up.

Might be a Tim Ferriss thing, whoever's listening can go Google it, I'm not claiming it. Delegate, automate, eliminate. And when you sort of look at it like that and it's kind of like, yeah, why am I getting so head up about not being able to mow the freaking lawns when I'm going to be a basket case to look after my boys or you know less painful to my wife.

So you tend to work out very quickly what's important and what's worth hanging onto, what's not.

Mark: I don't think that statement's even necessarily true. I think a lot of the time the things that are important sometimes can take a while to find. So we might have, you know, mowing the lawns is important to me.

And what's really important is maintaining some sense of identity or maintaining some independence or maintaining some form of ‘ this is what it means to be able to do things.’ I can mow my own lawn, you know. So if we get rid of that and we can delegate that and sort of rebrand, so well, what's actually important is spending time with your family.

And what does it look like to be successful as a dad or happy as a dad? So it's easy for ego to take over in that space when we've had these big changes happen. We know that there's going to be some stages that we have to work through as part of our grief or post trauma. And this is one of the things that we spoke about in the pre-interview was how hard it can sometimes be to get these messages of things like pacing and boom bust cycle across.

Because what we're thinking about is I just want a mow my damn lawns and you're telling me to do less. That doesn't line up with what's important to you. So if we're taking a true person-centred approach, we might spend a lot more time listening than we do talking, to finding out well, why is it important that you mow your lawns? What does that mean to you?

What are some strategies that we can put in place? What else do you want to be doing throughout the week? What are our goal is to get back to? and it's not uncommon that some of those goals won’t be achieved. So in the early days you might have some really big goals, like I want to return to work or I want to get back to walking or whatever it is.

And then as we roll through, normally what we find is that people get a lot better at setting small goals. Especially when we're looking at things like gratefulness practice, again to try and bring this back to parasympathetic nervous activity. When people first start, you know, what are the things that you're grateful for? Can we reframe away from the bad things to look at what are still some of the good things that are happening?

People normally start with really big things and then run out and as they get better, it's well, I'm still grateful that I can be, you know, having the time to do this podcast today or I got to be able to do A B and C.

Paul: and you said something a bit earlier, you mentioned rebranding as a word, and that's something as a stroke survivor, I struggle with and had to do because of my, you know, every stroke survivor’s situation is unique. But, you know, there were things that I couldn't do post injury that I used to be able to do.

And I still struggle with that from time to time. But you kind of got to go through that process to work it out. And I don't think there's any way of forcing that. You just kind of got to guide and have people come to their own realisations and then get... have you found that in your experience as well in treating?

Mark: Yeah, absolutely. And that's why it's called A Journey because we have to go through these different things and if we can clip on support services along the way. So psych counselling is obviously a really good, good way to help us process some of these new emotions or some of these different thoughts or moving to a state of acceptance where we can then look at what's beyond that because it's, you know, it is really common to get stuck looking in the rearview mirror about things were going great and then this happened to me and now I'm stuck. Now I can’t do A B and C.

Where working through that, you know, it's not a one-week process. For a lot of people, it's multiple years to get to that point where we can even start having that conversation around here's strategies we can put in place to help you move forward.

But we have to be looking forward to take those steps along the way. And I think with how we work with people with cognitive issues that you brought up before and mood changes, behaviour changes, maybe impulse control changes, part of that is recognising where is that person and where is the condition. So if we look at other neurological conditions, if we say Huntington's disease, for example, a big part of Huntington's disease is lack of impulse control.

So we have specific behaviour changes that happen because of the disease. So that's not that person. In the same way that if we've broken a leg and we can't step on it, that's part of the condition. So when we're working with people, looking at where are they at on that journey or what we use a lot in an exercise physiology or any behaviour change models is our stages of change model, which goes through pre-contemplative, contemplative, preparation, action, maintenance and then most importantly relapse or lapse.

So for a lot of people when we’re first diagnosed or when we have a brain injury, we might be in that pre-contemplative. So that person's not even thinking about what's next. They’re just working out how do we deal with these things. Where it's normally that contemplation preparation stage where we seem to see most people.

So you know, I've heard about the benefits of engaging in regular exercise. It’s something that I'd like to start doing. These are the things that I’m facing. I don't know if they will be able to help. Those are all very open questions that we can start working through as opposed to it's not going to work. It's not going to fix these problems.

Paul: Someone has heard of exercise physiology. They've heard about it from somebody somewhere and they might contact with an exercise physiologist. So what can people expect? I know the outcome might be different depending on the person, but how do you guys engage?

Mark: Let's just assume that all exercise physiologists operate in a similar way. There will be some that are specialised to one certain area.

So exercise physiology, we normally talk about having a discovery session as the first point of call. We normally roll through a subjective assessment first. So subjective assessment is basically, we shut up and you tell us everything that's going on with you. No detail is too small.

Paul: Okay.

Mark: Someone that's very good at doing this will ask open ended questions and they'll want to know more about what's important to that person.

So why is mowing the lawns important to you? What are the things that we're trying to get back towards? What are you finding hard at the moment? How does that impact your life? Once we have a relatively, somewhat clear picture of that person in front of us, where they've been, what they've been through, where they're hoping to get toward, normally we roll through a bit of an objective assessment.

So depending on the goals and the presenting challenges, that objective assessment might look slightly different. It can be everything from gait analysis to strength testing to aerobic capacity. And it just gives us a bit of an idea. If we have someone that says, you know, I live in a two story house and I can't get up to the first floor. If we're wheelchair bound, one strategy might be linking in with an OT and having house ‘mods’ done to put a lift in.

If we've got shortness of breath and exertion, then we can walk halfway up the stairs but then we’ve run out of puff. Putting them on a graded exercise program might be one strategy. If we have left sided hemiplegia, so weakness down one side, then looking at what are our rehabilitation strategies in that point. Or they might be other ergonomic aides or, you know, assistive technology that we can lean into with support of an OT.

Once we sort of know what's important to that person, where are they trying to get to? What's stopping them from getting there? What are the things that we see on objective assessment?

Paul: Yep.

Mark: Then we basically just put together an action plan and this can be .. allied health are sort of famous for the letterhead and a bit of scribble on there.

Paul: Yes. Yep.

Mark: But normally those are a graded rehab program. And this is where it can go any and all directions depending on the person with their exercise program. But normally some form of strength, some form of mobility, some form of balance, some form of aerobic activity. So, improving our huff and puff, improving our strength, improving our balance. Some focus on what are the specific challenges we’re facing, if it's foot drop or balance or trunk control. Some exercise physiologists might lean into things like hydrotherapy.

So, if walking programs aren’t suitable, we might get people walking in a pool for a while. Again, there's a good amount of overlap with physiotherapy here because muscle physio and neurological physio and exercise physiology, we all utilise exercise. We just spend a lot more time building out exercise programs and they tend to be a little bit bigger in terms of … a physio might give you 4 to 6 exercises and get you to practice that every second or third day.

We might give you a walking program, some tips to improve A, B and C. But then a 12-week plan with progressions built into it. We normally call that a “mud map” when people leave so we know roughly where we're heading.

Paul: Yep.

Mark: My action plans, normally they'd have points of what I think will be suitable self-management strategies or education points.

So 99% of mine will include pacing concept and boom bust cycles, as sort of like education point 1. I normally like to help people work out where their baseline is so first of all what's their baseline fatgiue? So if we remove all aggravators, we still have a fatigue of 2 or 3 out of 10, or we still have pain of 2 or 3 out of 10.

The analogy I'll use for that is like waves and tides. So if we have a really big surf beach, you know, there's these out of control waves, which are our aggravators, we settle that back down to the Bay, but there's still high tide and low tide. So we have this sort of resting baseline which can change day to day.

But if we can get rid of those peak and trough experiences, then it's a lot easier to sit on the boat in Port Phillip Bay than it is at Gunnamatta Beach. That action plan of self-management strategies, education, focus points, behaviour change, might be 3 points or might be 33. We don't necessarily know what's going to work exactly for that person after only spending 45 to 90 minutes with them, we know what works for people in general.

So we normally start with a general approach. And as we work closer with people, we lean into the things that are working for them. We don't really care so much about the 1%ers if there’s still 50%ers on the board. So we normally go after big rocks first and then we just build and build and build.

Basically that's what we do, is get a good feel or good understanding of the person and try and get a little bit of data around where they are, find out what their goals are, and then create a little bit of a “mud map” for them to work on over 6 to 12 weeks and then depending on the clinician, depending on the person, depending on a whole heap of other factors, we might see them 3 times or we might see them 3 times a week.

Paul: So getting that baseline, you mentioned about establishing that baseline, whether you know, Port Phillip Bay or Gunnamatta and anyone that's listening to this is going to guess we’re in Victoria by now. So after grand final conversation. But to expand on your analogy, if that person lives at Gunnamatta because of their life situation, it must be difficult to try and find that baseline.

I mean, I guess it's a case of trying to incremental introduce the strategies and see where it settles. Like how do you approach that? If Gunnamatta’s where they live.

Mark: There's a few really specific questions that I’ve found helpful. One is, if we use pain as an example, because sometimes pain is a little bit easier to clarify than fatigue, although pain is complex in its nature as well.

Can you remember a time that you didn't have pain in the last 6 weeks or 6 days or 6 hours? Can you remember a time when you didn't have excessive fatigue in the last 6 weeks, 6 days or 6 hours? And sometimes this question is something that we keep coming back to over days, weeks and months, especially when we're learning or hearing more about that person.

So they might say, you know, I had my friend's wedding on Friday, it was awesome. And it was such a nice dinner. And then we danced and we did this and that. What was your fatigue like while you danced for 3 or 4 hours? I was fine mate, but don't worry about that. You know, like the music was great. Love the band, my favourite drinks were there.

That's our true North. Okay? And obviously there's a lot of compounding factors, you know, whether that's substances or drinks or, you know, the context and the adrenaline release. But it can be quite hard to think of a time when you haven't had pain, haven’t had fatigue, unless we're talking about things that we enjoy. So a lot of the time, the things that we enjoy can almost be a distraction from our fatigue and from our pain, which then leads us into things like pacing diary.

So getting people to record what they're doing throughout the day and giving it a rating for low, medium, high fatigue. Or giving it a rating of 1 to 10 out of 10 fatigue. Sometimes we’ll get people to highlight those as well green, yellow, red. And we might have, you know, we felt great watching the grand final with our friends at a barbecue.

But when we woke up the next morning, just couldn't get going. I don't know what was wrong. I think I had a good night's sleep, but I just felt exhausted the whole day. And when we have that written pacing diary, which is being filled out by the person, it makes it easy to have that conversation of, well, if you went for a run for 10 kilometres, your legs would be sore the next day.

So similar with our fatigue, we can see this equals that. The other question that I come back to a lot with people is when we're talking about goals and trying to look forward, is the goal to get rid of your fatigue or is it to get back to function or worded differently, would you rather have no fatigue or be able to do all the things that you love and normally when we bring this question up, we know what those things are that that person wants to do.

So would you rather be able to play with your kids and drop them off to school and then have to have a nap in the morning? Or would you rather not be able to sort of complete that role, but you don’t feel fatigue? A lot of people make the mistake of thinking that these are one and the same goal.

But we can chop away a whole lot of things to get rid of fatigue. But it doesn't mean that it's bringing us quality of life.

Paul: No, because if you sit in a cloud sack all day, you're not going to feel fatigued. But it's not a lot of fun.

Mark: But what have we done? You know, it's like the goal of life is not to make zero mistakes.

Paul: That's it. Do you find sometimes getting help from other people, like family members. I come at this from my issues from a cognitive perspective, because, you know, sometimes I think, you know, someone might ask me “oh were you fatigued yesterday?” No I had a ball! and then my wife will say, “No, you were a snappy two-year-old!”.

So I guess that's part of what you talk about, about spokes before and getting other people, you know, as appropriately involved in those sorts of conversations as long as the patient is on board with all that. Is that correct?

Mark: Yeah, absolutely. The more spokes you have, the better, it makes sense that your family and friends and those closest to you are in that journey with you.

A lot of the time when we put goals down, one step that we can take is socialising those goals. So, you might say I want to achieve A, B and C, but to achieve that means that we have to get rid of all of your household duties and all of your family obligations so your wife might not be on board with that goal.

Paul: Nah not so much!

Mark: So you know, might need to be workshopped a little bit so we can achieve both. And if we just link that back to your question before with that person that lives at Gunnamatta. That doesn't have to be the case. So when we're in the surf beach, we’re getting hit, we’re getting hit, we’re getting hit, it feels like the hardest thing to imagine is for those waves not to be there or for that fatigue not to be there or for that pain not to be there.

And then this is where a circuit breaker or a flare up plan or fatigue plan can be really beneficial. So that we have some time to hit the reset button. When we get back to that true baseline or when we get closer to Port Phillip Bay, then we can put strategies in place. An example of a flare up plan, whether we're talking about tendon health, fatigue, pain, most of the flare up plans I’ve put together normally last for about 72 hours.

So it's not a week to work and then I had a couple of hours off after work and watched a movie. It's a deliberate plan where we have different forms of rest. So we have good quality sleep and we have strategies to try and improve our sleep. We potentially utilise naps. We potentially utilise creative rest.

We deload the stressors in our lives, which need to be identified for what those are. And we try to settle those down a little bit. This is very individual to the person. It's not a 30-second activity to work out, but it is important to note that Gunnamatta is not there for no reason, there's something that's creating those waves.

We can have real and we can have perceived stressors. So some things that are real, some things are perceived. And when we talk about perceived stressors, these are normally the things that our fears and our beliefs will play into. So if I go to X, this will happen. And much like that, that feeling before getting a needle, that anxious build up which draws us into sympathetic nervous activity is exhausting.

Sometimes we work with people to put in pacing concepts and boom bust cycles and the feedback that we get is I have to think about so much what I'm thinking about, it's a stressor for me. So I'm spending spoons trying to work out how I manage my spoons.

Paul: Yes, yes, totally, totally relate to that.

Mark: And that's where things like Default Diaries can be really beneficial. So don't worry about recording everything that you do, we already have a relatively good idea of what your aggravators are. Let's look forward.

Let's plan out what your day is going to look like. Yes, your day is going to change most days, but there are going to be some common routines. What time do you wake up? That should be within about an hour each day. Otherwise, we're increasing our likelihood of social jetlag. So if you normally get up at 6 a.m. and then you get up at 9 a.m. on the weekends, guarantee you feel lethargic.

If we have our wake time, what happens most days after that? Do you have breakfast? Do you have coffee? Can we add in some sunlight exposure? Can we add in some hydration. What happens after that? Are the family obligations, do the kids need to get ready for school? What are we going to change that out with on the weekends? Are we're still going to have some family connecting time in there?

Are there 2, 3, 4 hours of things that are going to happen every single day and now we can bulk out a little bit of a rest. So that first 4 or 5 hours happens on autopilot. What happens next? Is it work time, is it free time? Is it hobby time? Is it social time? Can we have some little 45 the 90-minute blocks, when we get to X amount of time, we need to have half time and deload, de-stress, recover.

So can we book that into your default diary and then similar for the afternoon and anything. What’s our set bedtime? When do we have dinner? Do you cook or do you clean, you know?

Paul: As I mentioned when we first started our chat, I found an exercise physiologist by pure accident and a bit of a Google. How do people normally get referred to an EP?

Mark: So if anyone is interested in exercise physiology services, quickest way is essa.org.au. Which is our governing body. There's a function on that website where you could search for your nearest exercise physiologist or I'm sure, if you jump on Google and type in exercise physiologist you'll find one straightaway for those that are keen.

Exercise physiology follows the same funding pathways as all Allied Health. So there's funding for Medicare and primary care plans. If you have a complex or chronic condition, which obviously stroke would fall into, the NDIS, for those that are NDIS participants, exercise physiology falls under the health and wellbeing category. So your plan manager can assist with that. Or your support coordinator can assist with that. Otherwise having a chat with your existing team.

So whether that's an occupational therapist, a neurological physio, you can ask them, would I benefit from working with an exercise physiologist? Do you know anyone local to me that you've worked with in the past? Or even a better question, are there any services that I'm currently missing from my team, because a lot of the time what we can be guilty of in Allied Health is we can take a person-centred approach, but we may only see our scope.

This is what I can do to help this person. My job is to put an exercise program in place to help improve A, B and C. We don't necessarily have a checklist that says, are you currently seeing a dietician? Are you currently seeing a podiatrist? Are you currently working with an occupational therapist? Good clinicians will go through more and more questions.

And the more time you spend with someone, the more chances there are for them to go into these questions. But there's not a guarantee that every single service is going to be catered for. The other thing that we’ve leant on a few times in this podcast is that best outcomes come from when the person takes an active role in their own rehabilitation or capacity building or achievement of goals.

So the less dependent and the more independent we are, the more likely we are to get really significant long term outcomes. And this can be in asking more questions, it can be in taking a willing approach to trialling new things. So if you're working with an occupational therapist, looking at what different equipment or different ergonomic aids which might be available.

Knowing that, again, that might be a trial and error basis. You know, there's no one size fits all.

Paul: You did mention assistive technology before, but one question I wanted to ask, not necessarily specifically related to technology, but what does the future look like for exercise physio for stroke survivors, but for everybody? I mean, we talked about assistive technology before and I love technology.

What is coming down the line for you guys?

Mark: We're going to give you a really disappointing answer. When we look at a population level, we see increasing rates of those who are overweight or obese, we see increasing rates of metabolic conditions, we see high rates of falls, we see all these things that we know that if we take action, we can have significant outcomes for.

Less than half the Australian population meet the national physical activity guidelines when we're just looking at aerobic exercise. It5’s only 17% of Australian adults that meet the guidelines when we include resistance-based exercise. So it means that 4 out of 5 Australians aren't moving enough. So exercise physiology as an industry, the key goal is to get more people moving, more often. We get significantly better health outcomes at a population level when we get people from 0 to 10 minutes than we do from working on our top performers.

So if we think of how the fitness industry is set up in Australia, if you already go to CrossFit F45, bootcamp, any form of structured exercise, you’re probably in the top 20% or top 17% more specifically. I care less about what happens to that 17% and more about how do we engage those that are at the start line or not even at the start line.

So they’re doing zero. So going from 0 to 2000 steps a day. Is our biggest return on investment, when we look at improvements to physical activity. So one of the most successful global physical activity interventions in the last 5 years was Pokémon Go. Link that back to your technology question.

What it did is that it took kids from being on their screens on the couch to on the screens, on the bike. And then adults also followed into it. So from augmented reality that increased physical activity rates at global level to pull some more data into that, physical inactivity is responsible for 1 in 6 premature deaths globally.

So it's about, you know, it's about getting more people moving more often as opposed to what we're doing at the end of things at an industry or at a populist level. When we think about neurological conditions, there's a lot that's coming through with technology.

I like focusing on the basics and getting the simple steps right, which in my head, what I found works best for the people in front of me is having a good understanding of the boom bust cycle, having the ability to apply pacing concepts, and then developing a graded exercise program which leans into their goals and ideally bringing as much self-management or as much active engagement into how we achieve that as possible, which has flow on effects for things like development of self-advocacy.

Which has flow on effects for self-esteem. It has flow on effects for mental health benefits. It has flow on effects for decreasing risk of co-morbidities or secondary complications. So if we do nothing else, then get people moving a little bit more. That's where we get most bang for our buck.

And obviously when we're talking about specific conditions with specific challenges, that is addressing those to allow someone to get back to physical activity or looking at different ways to work around would be the role of an EP. Working in that team for assistive technology, ergonomic aids, could be important, but looking down the track 10 years, I think as an industry, the basics being done well out to a larger audience is where the gains will come from.

Paul: Fantastic. I guess my final question for today, and it's always the question I ask everybody and I've got a feeling after speaking today, I'm going to have a rough idea of what the answer is going to be. If you had one nugget of wisdom, one tip to leave somebody after listening today, you know bearing in mind we are aimed at stroke survivors. What would it be from your side of things? What would be that one nugget of wisdom you can leave us with?

Mark: Can I do two tips?

Paul: Absolutely.

Mark: Move more and recover more.

Paul: That simple?

Mark: Yeah. If we can get more movement in, the flow on effects are massive. If we can get recovery time in, the flow on effects are massive. I think those are two areas that we do very, very poorly with at a developed nations level.

So if we think of sleep, for example, over the last decade the average amount of sleep has been ripped down by 20%. So recovery is important, sleep is important, movement is important. Start from a strong stable, basic foundation. Put the fancy stuff on top of that if you want, but don't start fancy.

Paul: And I'm just going to add my $0.05 to this one because I feel like I've probably got some experience in this.

But don't underestimate the effect of movement on this, he says, pointing to his head on a podcast, which makes no sense. I'm clearly getting a little tired now, but yeah, I think that's a great tip and I think we can all benefit from that regardless of being injured, not injured at any stage of our lives.

Mark: Yeah, yeah, it is very easy to fall into condition specific advice, where health is moving is again looking at the individual or looking at the person because nothing is siloed. If we’re physically inactive, we know that our risk of cardiovascular disease is going to be greater. We know that our risk of metabolic conditions are going to be greater and it also links into neurodegenerative conditions and also links into mental health conditions, etc., etc.. If we look at the other side of the coin increasing movement, we don't just walk to improve our heart health.

We also walk to improve our mood. We also walk to increase our creativeness or our productivity or our ability to engage with others. If we can put that outside, then we're also getting some sunshine which is going to help with circadian rhythm and melatonin release, which is going to help with our sleep patterns. So the real benefit of active engagement in your own health rehabilitation performance is that nothing is siloed.

What's good for the goose is good for the gander.

Paul: So what you're saying is motion is lotion, Mark.

Mark: Motion is lotion. Well done.

Paul: Thank you. Thanks very much for your time. I really appreciate it. That was a fantastic chat.

Mark: Thank you.