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This episode of the CFStrong Podcast is thanks to our collaboration with CFPhysio. In this episode, Jen Hauser, a physiotherapist with nearly twenty years experience, speaks with Luke about how he manages his CF and physiotherapy and how he stays motivated to keep active.

Luke, a young man with CF, shares some of his journey with developing a routine for life, including aspects of lung hygiene and exercise. Luke talks about his strategies for motivating himself and staying on track, especially when there might not be any obvious symptoms to treat, or immediate improvement in health outcomes when he does complete his physiotherapy. If you are feeling like you want to revisit some old strategies or find new ones, listen in and see what you can find through Luke’s insights.

Image is of a person standing next to a bike in silhouette against a sunrise. The person and bike are black against the brightness of the sunrise.

I think it’s fair to say that in the past I’ve been usually pretty—not that consistent, I guess you could say, with you know, treatments and whatever else. So, a little while ago, I made just like a simple, like little calendar thing of the week and I’ve got that laminated. So, it’s just like, you know, Monday, Tuesday, Wednesday, and like a little box. So, what I do is every time I do physio of some sort, I’ll just put a tick on it so I can look at that. And it’s sort of—a piece of paper can’t really hold you accountable for not doing anything. But it’s more so to look at, at least of some sort of visual reminder that I haven’t done you know hypertonic on this day? Why not?

—Luke

Transcript

Jen: Hello and welcome to the CF physio.com and CFStrong collaboration podcast series. My name is Jen Hauser. I’m a physiotherapist with almost 20 years’ experience in cystic fibrosis care and the project lead for CF physio.com. Together with CFStrong we have joined forces to bring to the CF community real life insights and personal experiences on all things physiotherapy and CF.  

CF physio.com is a not-for-profit organisation striving to deliver evidence-based education in CF physiotherapy management to both healthcare workers and individuals impacted by CF. CFStrong is a website designed to inform, educate, and empower adults impacted by CF through the sharing of individual’s personal journeys of living with CF.  

We hope you find some value from listening to the podcasts we bring to you in this series. Please remember, the content is not intended to replace your usual health care and we encourage you to discuss any concerns or questions you may have with your healthcare team directly. I’m super excited today to have Luke with us who has agreed to come in and chat with me about aspects of his physiotherapy care. Luke, thanks so much for joining me today. 

Luke: No problem at all. 

Jen: Great to have you here. Now Luke, I know we were talking a little bit before we got on here just about the fact that you actually haven’t been in hospital for an admission for your CF for lung needs for over 10 years. And on a day-to-day basis you sort of experience relatively not many symptoms of sputum or cough. So, are you happy to sort of share with us what you’re currently doing for physio? 

Luke: Yes, my current physio regime if I could use that terminology, pretty average, really, I think you could say. I sort of have a really—every alternate day, I have a bit of a rotation, you know, sort of thing I guess you could say. So, one day, I will go out on my bicycle, and go for a ride. And then the next day, I’ll do hypertonic and Aerobika, or one of the various, you know, blowy things that exist. And then, you know, like the next day it’s back on the bike, so it’s just sort of that alternate day type thing. Which I guess, it sort of works, I suppose.  

Jen: Yeah. And I, I’m sort of assuming that maybe rotating that is helping you with motivating you to keep with the program, because how do you find, you know, do you feel any different after you’ve done your physio, if you’re not having symptoms before you start do you feel fantastically better after you’ve done the treatment or tell us how you feel? 

Luke: I don’t really seem to feel, I just feel the same, I guess. Maybe if I, look, I’m sure if I had some more severe symptoms, or say for example, maybe even if I just had a, had a cold or something like that, I probably wouldn’t be riding my bike, but I’d still be doing my hypotonic and things. So, you know, as for how I feel after I do a physio session, whatever you want to call it, just not really that different. I don’t really think I’ve ever sort of thought, oh, wow, I mean, I know I’ve really done, you know, I feel like I’ve really put in a good physio session, or whatever. I just sort of feel about as good as what I did before I started.  

Jen: Yeah.  

Luke: Maybe after the hypertonic because that does make me cough a bit.  

Jen: Yeah.  

Luke: And that does make me a bit productive after that sometimes feel a little bit ugh but that doesn’t really linger on for any length of time. Maybe I don’t know, like just even a few minutes afterwards. But once you go and you wash out the thing, it’s just, you know, back to normal. 

Jen: You’re feeling back to how you did before? 

Luke: Yeah. Probably, you know, the taste of salt water in your mouth.  

Jen: Yeah 

Luke: It’s probably about what that is. 

Jen: And Luke, I think you’re not alone in reporting that because I certainly know from discussions with other individuals with CF when they’re relatively asymptomatic, so they don’t have a lot of secretions or they don’t have a lot of, you know, chest tightness or shortness of breath, is that they don’t feel any difference, you know, compared to if you go to the gym and you do a workout you feel wow, that felt great. You get the release of endorphins; you actually see changes in your muscles over time. I know a lot of people would say they find it really difficult to motivate themselves to do a treatment when they’re not feeling that immediate gratification or immediate, you know, positive feedback that what we’re doing is helping so how do you motivate yourself to do it? 

Luke: Oh, that’s a good question. I think I’ve sort of [in] the last year or so, I’ve gotten into cycling, if I could use that terminology. So that’s not really too much of a chore, at least to do that. And along the way, I’ve set myself some key points to get to. So, when I first started riding, I thought well I’ll ride this, you know, X amount of kilometers, and then I’ll get myself like a new set of tires or whatever. And you know once again, then get to, you know, more kilometers up, I’ll get myself a new pair of shoes or a better pair than what I already had sort of thing. So, I’ve set myself some markers along the way.  

That said, though, all the markers, at least, I’ve done them all pretty much. For the early stages, you know, that was sort of a way to sort of keep going a little bit. That said, I still have, have markers. Like this year, initially my goal was to do as many kilometers this year as what I had done last year. So, I calculated how many that would be on average, I think it was about 70 or something. But you know, every year, except I think, maybe the first two weeks of the year, I’ve done over 100. So, I’ve been trying to keep the 100-streak going.  

Jen: Nice.  

Luke: And then I’ve also got like a bigger goal, as to once I reach X amount of kilometers on my current bike, I’m going to look at getting a new one. So, I suppose, in regards to that part of it, setting little sort of challenges and goals and things to sort of keep yourself on track, I guess you could use that— 

Jen: So, on track and motivated, you’re giving yourself those little, little rewards so you’re getting you know that motivation.  

Luke: Yeah 

Jen: Intrinsically. And I might have heard along the grapevine that you, you’re a bit of a fan of spreadsheets and reports and keep records of how you’re tracking along which, which is another great technique too, because you can then see. But you can also share it with your physio and get a little bit of, you know, positive reassurance, when you can show them what you’ve been doing. So, has that helped for you, having, you know, keeping on track like that recording it? 

Luke: Yeah, it has. And I’ve, and then, like, I’ve got sort of the spreadsheet has got, you know, it’ll have the week on it. And then it’s got something like, the amount of kilometers I’ve, had done in the week. And if I’m doing, you know, if I want to keep the average of like, 70. Because that’s, you know, if I wanted to do as many kilometers this year as what I did last year, I had to do 70ks a week this year. So, I’ve got, you know, my kilometers that I would have to be at for that particular week. And then I’ve got what I have done, and then like the difference.  

Jen: Okay, nice. Yeah, see way too much maths for me. But I love that. If you’re a numbers man, and you like it, and it works, go for it. 

Luke: Yeah. And then I’ve also got a little box that tells me what my average for the year has been. And then, like my average kilometres for the, for the year, and then what I will, if I keep doing that distance, then how many I will do for the whole year.  

Jen: Yeah. So, it’s that cumulative.  

Luke: Far more complex than what it needs to be. 

Jen: It doesn’t matter, if it works for you. It’s got to work for you really. Now I’m excited about the exercise stuff, but and we’re going to revisit that, but can I just jump back to hypertonic and the Aerobika 

Luke: Yes. 

 

Short music break

 

Jen: Exercise, as you said, like you’re cycling, and you’re enjoying doing that, and you’re finding things to challenge yourself with that. I imagine that’s not as easy with hypertonic and Aerobika, as we said, because you’re just not feeling you’re getting any gains, are there things that you’ve tried, either in the past that have worked or haven’t worked, or things that you’re doing now that have helped to keep you on track with your airway clearance and nebs? 

Luke: One thing, I think it’s fair to say that, in the past I’ve been usually pretty—not that consistent, I guess you could say, with you know, treatments and whatever else. So, a little while ago, I made just like a simple, like little calendar thing of the week.  

Jen: Yep.  

Luke: And I’ve got that laminated. So, it’s just like, you know, Monday, Tuesday, Wednesday, and like a little box. So, what I do is every time I do physio of some sort, I’ll just put a tick on it so I can look at that. And it’s sort of, a piece of paper can’t really hold you accountable for not doing anything. But it’s more so to look at, at least of some sort of visual reminder that ‘Oh I haven’t done you know hypotonic on this day. Why not?’ And if there’s a particular reason why that hasn’t happened, I will write it on, in the little box. Well, with hypotonic, for example, I mean, it’s an inside activity. So, I mean— 

Jen: You can’t use weather as an excuse, can you, that you haven’t done your physio?  

Luke: No, you can’t. I mean, maybe you could say that you were getting ready to do it and I don’t know, you had like an annoying, annoying guest over and you just couldn’t get rid of them. And they left like 12 o’clock. So, you could write, you know, a visitor or something, maybe in that context. But there’s not really too many reasons why you couldn’t be doing it. So that has been handy as in like a visual reminder— 

Jen: Yeah. 

Luke: —with things. And not that I have a person to sort of pester me about it. But— 

Jen: Other than your physio.  

Luke: Exactly. But I do feel, I don’t know, this might be some sort of thing I’ve cooked up in my own head. But I do feel sometimes that maybe somebody who has a partner they could maybe just give them a little bit of a prod like, ask them the question, ‘Oh have you done that?  

Jen: Yeah.  

Luke: No? Well, why not?  

Jen: Yeah, a gentle nudge, isn’t it?  

Luke: Have you done that, yes, we—then you get a, you get a gold star. 

Jen: But I think, you know, you’ve touched on so many things there that, you know, the accountability, I think, is really important when we talk about motivation. And when we try and stick with a consistent plan. And that can work in lots of ways. So, for you, you’ve found that way, with the laminated visual reminder. I know others have tried in the past setting reminders on their phone, you know, and get the ping on their phone. ‘Oh, that’s right. I haven’t done that.’ Or, as you said, using other people around you as that support for that gentle nudge and not so that it sounds like they’re pestering you or saying, you know, hang about, why haven’t you done it and putting that pressure, because I’m not so sure that works for everyone, but just nice to be able to have that reminder.  

And I think again, you touched on a really interesting point of writing down when you haven’t been able to achieve it. And the reason for that, and whether that’s external factors, like the annoying visitor who came over, or maybe sometimes even some internal factors, so maybe you were actually feeling really unwell that day, and you weren’t tolerating the hypertonic. Or you were just actually really unmotivated because things weren’t fantastic at the moment in your life. And you can start to pick up whether there’s patterns there, but it gives you some information, maybe to talk to your physio, or your care team about and work together, about changing the program.  

Because I think that’s, you know, difficult to motivate when you don’t have symptoms, but also, you’ve, you’ve said difficult to motivate it if it’s the same thing every day. So, you’re mixing it up a little bit, and combining exercise and airway clearance as your treatment. But it’s important to know that you can change what you’re doing. If you understand what the treatments are meant to be achieving. I think you know, then you’re empowered, you know, to modify. Does that sort of resonate? 

Luke: Yes, I think so. I guess, at least on my end, you know, not really being that, in the past, overly sort of consistent, you know, with, with things, I think going from, in the case of not doing anything, or doing something maybe two to three times a week. I think trying to maybe get that into it every alternate day or something to sort of get yourself to a little bit of if, you know, doing something once a day you think ‘oh I can’t do this’, or it’s not really, you don’t feel it’s achievable. I think maybe being able to get into, into a groove of doing something every other day, or maybe you could I don’t know, I mean, I suppose it depends what works for you. But you go oh well, I’ll do a working week of this and then like have the weekend off maybe. But I think at least initially, well, at least for me, it was just getting into like a bit of a routine about it—  

Jen: Yeah.  

Luke: —with something. And then after you’ve done that enough, it’s somewhat, it’s a bit more autonomous.  

Jen: Yeah.  

Luke: So, it’s not such a big kind of drama, I guess, Dramas probably not the right word to use.  

Jen: Well, you’re in a pattern then, you’ve established— 

Luke: Yes 

Jen: —established a change in your routine, haven’t you? But if you were expected or encouraged, I should say rather than demanded, to do something every day. But you having that flexibility to set those goals of the three times a week or the working week or whatever it might be when you first start so that it’s something that is achievable for you. Because as, you know, because then you achieve it and you think this is great, I’m doing this I’m kicking goals. And I’m now in a pattern and and everyone’s really different in terms of how long it takes us to establish a pattern. We know that in human beings as, the creatures that we are, we’re very easily tipped off that pattern, and there’s always going to be things thrown at us. But I think, you know, having little strategies, like you’ve talked about to have in place can be super helpful. So, so that’s great. And I suspect a few people listening either have tried those things or haven’t, and they—or also revisiting things that didn’t work beforehand. Don’t throw them off the shelf all the time, oh that never worked for me, because, you know, it might work for you now. So, revisiting some of those strategies, I think, are really helpful. 

Luke: Yes, indeed.  

 

Short Music Break

 

Luke: I also think that, at least when when you get older, you have a bit more, say, I guess you could use that terminology, in what’s going on. Whereas, of course, when you’re younger, or pediatrics, or whatever, it’s, it’s like, oh well you’re doing this and you’re doing it every, every day. So, I think that could, that could probably then escalate into like a bit of a, at least when I was younger there was, there was really no negotiation, I guess you could say, in some context in regards to things. So, I think that can, can put you off a bit moving forward. So, it’s nice when you’re, you know, older, you can then work on getting into something that’s a bit more appropriate for you in regards to what you’re doing. 

Jen: Yeah. And that needs to be relevant to your life situation, and relevant to your health needs as well, doesn’t it? And I think you said, you know, it’s working together with your healthcare team to be able to give you the information. So, you can then make an informed choice, because you are an adult, and it is your health, and you are in control of that and should be given that control, but with the education provided so that you can you know, make those decisions with the information in the background. Okay, Luke exercise, you’ve talked to us a little bit about your riding.  

Luke: Yes.  

Jen: Tell me what your thoughts are about exercise as a form of airway clearance? 

Luke: Well, I guess it probably all comes back to is it, is, does it actually do anything? I don’t know. In regards to my case, I think it’s, it’s like well, I’m, I’m, I’m doing this so it, its physio, isn’t it? But, yeah, I don’t know— 

Jen: We’re talking about exercise in a physio podcast. So, it is very fair to say Luke that exercise is physio. So, you are very, very correct there. And it really is a hot topic at the moment in the CF community. And I think particularly in the presence of CFTR modulators that, you know, someone like yourself, who doesn’t have really obvious respiratory symptoms, is, is opting to do exercise as as a very strong component of their physio regime.  

And it will definitely have benefits for your lungs. And we know that exercise has huge health benefits beyond just the lungs in a CF setting. So even for non CF population, there is just a list as long as my arm for the benefits of exercise, and we should all be doing it. We can’t say yet though, that you can replace airway clearance with exercise. Unfortunately, we don’t have enough robust evidence, but I think between physios and patients working together we’re hoping to get a lot more evidence available, so that we can really inform you guys what you can do.  

But you know, you’ve got a really nice combination of exercise and then your sort of formal, if we can call it that, of your hypertonic saline and any Aerobika 

Luke: Yeah.  

Jen: Out of curiosity, do you ever add in a huff when you’re doing your bike riding or do any other techniques, whilst you’re riding that could help with secretion clearance or airflow? Loaded question there really isn’t it. 

Luke: Well, I’ve not actually attempted to do a huff whilst on the move. But I do stop, depending on sort of how far I’m going, you know, I will stop every now and then, and of course, we have might have to stop at lights or something. So that could be a, so I do use that at times as an opportunity to have a little bit of a huff for maybe, like a little bit of a brief cough or something or rather if I, if I need to, then also, depending on I guess sort of, what sort of, if I’ve been up a hill or something like that, that also is just a little bit of a good chance to maybe have a few deeper breaths, then just maybe try and like slow things down a little bit depending on you know, what I’ve just previously done to you know, to get to where, where I’ve decided to stop. 

Jen: Yeah, so you’re, you’re almost increasing your lung volumes whilst you’re pushing yourself up that hill. And then and then doing, if I can be bold enough to say, like an active cycle breathing technique when you’re pausing and and working on airflow.  

Luke: Yes.  

Jen: I reckon you should book in with your physio and talk more about that, actually your next clinic, about how you can combine different forms of airway clearance, maybe not with a device, with your exercise. I do think it’s the way forward, I think I really do see that that’s, that’s where we’re going to have to be pretty savvy with, you know, if you guys are opting to drop those sorts of formal physio treatments, how can we be lateral in our approach and combine some different breathing techniques with exercise.  

Tell me Luke, do you have measures that you look at to see, you know, you’ve talked about kilometers that you are recording to see that you’re achieving goals? When you started, were there, were there things that you needed to look at to make sure you were exercising safely? Or are there any other if we can say outcome measures that you’ve used to sort of keep track of how you’re progressing and the, the impact I suppose of the exercise for your overall health? 

Luke: I think just in regards to progression, I remember when I, because I started off just riding a mountain bike and then I was riding that for quite a while. And then after, then I was just like, actually, a friend of mine got a road bike and then a little bit after they got there’s I thought I should probably get one to considering I basically ride my mountain bike up the street and back. You know, it’s not riding it off road, really.  

Jen: Off track, yeah, yeah, off road.  

Luke: Exactly. But I remember the first time, or I think it was the first time, one of the first times I went for a ride on it, and I went, like, maybe two and a half or three kilometers, like not far at all. And when I got off, I’ve sort of, it was like I couldn’t stand up sort of situation. And I thought surely riding a bike, it’s not that strenuous. So that was interesting. My like, hips were really, yeah, I don’t know they were just cooked. Which was like oh, righto. That’s not great. But that progressed in—so I used to ride a particular loop. And then, I’d do, you know, of course do that every alternate day, and then once that sort of, say 5k loop or whatever got to seem easy. Or I could tell, or I could look at, because I record of course my, my journeys, so I could look and go, well, I’ve done that, like, quicker.  

Jen: Okay, yeah,  

Luke: The times it’s taking me to do that, it’s getting less. And also, when I’m finishing, I’m not feeling quite as— 

Jen: Cooked.  

Luke: Worn out.  

Jen: Yep. 

Luke: That then progressed, the length, you know, got a little bit longer. And then it was the same thing, I did that for a while, and then once that got, you know, I felt pretty much the same as what I did when I started or I was doing it quicker, you know, then that expanded again. So I’ve sort of got to a point now where if I go for a ride, I want to do at least 30 ish kilometers. So you know, starting off doing, you know, five or six, and then that got to a loop of about 10.  

Jen: And then you’ve build up to that. Pretty awesome. 

Luke: And then you know, so and when it comes, I mean, even when you’re running or if you’re walking or whatever, in regards to extending your route, I mean, if you, just say if you go around your block, and if that becomes easy, then you just you, just go the next one over, as well. And you can just extend your route like that. That’s sort of all I did, you know, as I started like in my suburb and you know, went around two blocks, right and then three blocks, and then and then that sort of then slowly extended into the next suburb over which now is like me going into the city and then back or on the other side of town and then back so.  

Jen: Yeah, and looking at those sorts of things, as you said, tracking about, you know, how long it’s taking you to do a certain distance. So doing the same loop and being able to look at some of those different measures to show that you’re finding it easier. That you’re getting that training effect.  

 

Short Music Break

 

Jen: Can I ask if there’s exercise testing, you know, to, to track that or do you record your heart rate? Have you got, you know, that mechanism on your bike to do that sort of thing or is that something you know, you’ve thought about or interested in? 

Luke: In regards to cycling there’s, there’s about three or so, there’s a quite a few ways you can track you know, progress or how much sort of effort you’re putting out. In my, I have a little, little computer just sort of goes in the front of the handlebars, and that tells me, has something on there like my average speed as well. So I can look at that. And yeah has got how far I’ve gone in kilometers and in how long as in like time as well.  

Jen: Yep.  

Luke: You can also measure, like power output, if you have a power meter on your, on your crank. I don’t have one of them. Look I don’t know, I might get one on the new bike. I’m not sure but—  

Jen: Might be one of your rewards. 

Luke: Yeah, maybe. So you can measure power. So how many watts, you know, you’re putting out and, you know, an average of watts and all that sort of such. Of course, yeah, there’s heart rate is something you can look at, and then also cadence as well. Like how many times you’re pedaling.  

Jen: Yep.  

Luke: There would be good metrics to have, but I’m not sure how to use those metrics if I, if I had them. If that makes any particular sense. 

Jen: Yeah. Okay. So how to interpret them and use them to then change your regime? 

Luke: Yes, exactly. And I mean, things, yeah, it would be, like a cadence, for example, is probably more so because you want to try and maintain that, that pedaling. So, if you’re, when you’re going up gears, down gears, whatever, you just really want to be maintaining that sort of output in regards to how many times you’re turning your legs over. So that maybe might not be quite as useful, I don’t know. But maybe something like power might be an interesting thing to look at, I’m not really—this requires more research, I think, on maybe what are good metrics and then also how to how to use them. 

Jen: Yeah, and that’s where there’s that role, whether it’s exercise physiology, or with your physio working together to look at your baseline measures. And, and I think probably an important point, we should probably make to anyone who’s listening in is if they’re, if they haven’t exercised before, and they’re starting to think about putting in some new exercise regimes is working together with your healthcare team, just to double check that there aren’t any, you know, safety requirements, or, you know, you felt cooked after you did your first session with your hips.  

And, and obviously, you know, we all feel that we’ve worked when we first exercise and use muscles we haven’t worked for a while, but we certainly don’t want to cause any injuries that mean that you can’t progress your exercise or that it demotivates you because you felt so cooked after the session, you don’t want to go back to it. So, I think that’s probably an important point, work together with your team and making sure you start small. And as you said, set yourself some goals to then progress and look at some measures that mean something to you, because as you said, it’s pointless collecting all of that information if you, if it’s not going to change anything for you. Yeah, think of a different reward, like the new shoes or some new, new bike gear. 

Luke: Yes, indeed. 

Jen: Luke you’ve motivated me to consider going and getting a bike and that’s a pretty big thing because I haven’t ridden a bike in about oh more than 10 years as long as you haven’t had admission so so maybe a few of the listeners will be feeling the same but if bikes are difficult and not able to get exercising out at the moment and weather is a difficulty then remember exercise bikes are another good option. No barriers there because it doesn’t rain indoors. 

Luke: Yeah, well that’s true. You get on, what do they call it, it’s swift I think. 

Jen: And yeah, there’s a huge amount of platforms. 

Luke: There is yeah, there’s a few. I don’t do any of them, I do analog riding, you know. 

Jen: Analog riding I like that idea but in the world of modern technology and and certainly through the silver lining of COVID we’ve seen so many platforms, online platforms available for exercise and to help motivate and support and I’ll do a bit of a shout out because I can to the Beam Feel Good team, they’ve developed a fantastic website that’s CF specific and a great way to have connectivity and accountability and specific exercise support from the comfort of your home and not having to deal with you know infection issues in a, in a gym or or being you know, not so confident to go and exercise with other people and starting to do it in the safety of your home. So, and a heap more online exercise opportunities. So definitely encourage people to go and check them out and work with their team to put together some physical activity. So very, very important for not only our physical health but our mental well being as well. So, Luke on that note, I reckon we might bring it to a close our chat today unless you’ve got any other gems that you’d like to share with the CF community out there. 

Luke: Start small and I don’t know dream big. 

Jen: Oh love it. Start small and dream big. I think that could be made into a t shirt. 

Luke: You probably could be. 

Jen: Sounds good. Luke, thank you so much for your time today. I think, you know, there will definitely be people that are listening in that have found this really valuable. So I can’t thank you enough for sharing some of your journey with us. All the best for those big goals in achieving with your bike and we’ll catch up with you another time hopefully.  

Luke: Yeah, lovely.  

Jen: Okay. 

CFPhysio strives to deliver evidence-based education in CF physiotherapist management that is accessible to all. Their mission is to educate and empower healthcare workers (involved in the care of individuals with CF) and all those impacted by CF in physiotherapy. Visit CFPhysio to learn more.

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