Maxwell McKnight: Hi guys, welcome to the latest webinar. My name is Maxwell McKnight. I’m a full-time business management student and I volunteer for SMA UK. I’m joined by Robert. Would you like to introduce yourself?  

 

Robert Muni Lofra: Hi, my name is Robert Muni Lofra. I’m a Consultant Physio at the John Walton in Newcastle and I was very impressed about Maxwell’s exercise routine, so I thought it would be a great idea to talk a bit more about it so here I am. Thanks for the invitation to SMA UK and for your time also, Maxwell. 

 

Maxwell McKnight: No problem at all. Shall we get straight into our points?  

 

Robert Muni Lofra: Oh yeah. So, I wanted to ask you because my perspective as a physiotherapist is very interesting where you end up going with your exercise, so I wanted to know a bit more about your background and how was your motor development, were you able to sit independently and stand or walk at any point?  

 

Maxwell McKnight: Yeah, so Great Ormond Street said I was quite a strong type 2 so when I was younger, I could walk but obviously assisted. I had a frame, a Kaye frame around me when I used to walk. I could sit independently. I used to actually walk around the dining room table as my exercise kind of thing when I was younger which was quite cool. And then it’s kind of just progressed to me getting a standing frame and I think my main exercise really came from standing and trying to move my legs really. 

 

Robert Muni Lofra: That’s very good. And how old are you now, Maxwell?  

 

Maxwell McKnight: I’m 19 years old. 

 

Robert Muni Lofra: 19 years old. So, since that time that you were able to walk around the table with some assistance and so on, how do you feel things have progressed to this point that you are right now? Which ability do you feel like are kind of pretty much the same and which abilities kind of have deteriorated and are not exactly the same?  

 

Maxwell McKnight: Funny enough, I think my legs have lost quite a lot of power and even though I did walk every single day I walked at school and at home and I used to stand up in class and that kind of disappeared for me when I was in year 9 so maybe about 13, 14 and that was mainly because of my spinal operation actually. After that I lost the ability to kind of stand. My hips got a little bit dodgy, and it was kind of just the hips that kind of put me out of action of standing. But in terms of my upper body, my upper body is pretty much almost the same as it used to be. I’ve kind of carried on with all the exercise. I have quite a lot of routines. Through secondary school, every single morning I would do an exercise routine with my upper body. Yeah. 

 

Robert Muni Lofra: That’s very good. It’s not uncommon so probably one of the main key factors for this progression is growth. You were working really hard, but you were growing, and the same muscles were meant to or kind of approximately the same muscles were meant to work with a much bigger body and that has an impact. And also, we’ve heard from many of our patients the impact of surgery which we do know that it’s a mid-long-term benefit but the immediate effect of changing your biomechanics, how your body works to do certain things, changes significantly with surgery. 

 

Maxwell McKnight: I guess you’re just doing things in a different position that you’re not used to right before. I guess I actually built back quite a lot of my strength but there were little bits like I think that my neck was a big one. I didn’t get the strength back in my neck but in most things, I did get my strength back over maybe a period of maybe a year and a half. It did take me quite a long time to recover though from it, I guess it is quite a major surgery though. 

 

Robert Muni Lofra: Yeah. There is also the fact that your body is in somehow supported by the surgery but on the other hand your body is fixed and unable to do some of the compensations that were allowing you to do certain things. So, neck is a very good example. Your neck was probably balanced and put in the right position by your whole spine and the fact that a big part of your spine was fixed now, you’re just trying to do the same job with just the top bit of your spine and that changes the rules of the game and that’s really what happened. 

 

Maxwell McKnight: Oh, definitely. But then on the other hand I guess doing my exercise routines I felt that I could breathe a lot better so that helped because my lung capacity got like quite a lot bigger actually. And with Spinraza, it actually increased a little bit as well which was quite nice. Yeah. 

 

Robert Muni Lofra: That’s very good. Okay so now just moving more into the exercise bit, I wanted to ask you how it’s been your trajectory over these years and starting from school. Were you able to do PE at school?  

 

Maxwell McKnight: Yes. So, I got involved with PE all the way from reception really, so I think it’s mainly just about adapting it so like when we would play basketball, having the net really high up isn’t going to work for me so we put it on the floor, and I still got involved that way. And obviously it’s harder definitely to do it in the winter months when it’s a bit cold and like my muscles aren’t working but I think it’s really good to get involved and if you can’t do it outside, then trying to bring the group inside into the hall or something just to adapt it in that way but I kind of always got involved. It was definitely harder as I got older because obviously, I got a little bit weaker, but I think there’s always ways you can adapt and at one point when they were doing football, obviously I could be the goalkeeper or something, but I chose to go to the school gym and actually do my own routine during PE. 

 

Robert Muni Lofra: Okay. 

 

Maxwell McKnight: When they were doing like football and stuff like that, obviously I joined in if they were doing javelin or something like that. I used to get like a little ball out and throw it as far as I could or something like that. 

 

Robert Muni Lofra: That’s very good. 

 

Maxwell McKnight: Yeah, yeah but other than that I’d go to the gym and there’s quite a lot of like machines in there that we could adapt. Like the rowing machine, we pulled it out as far as it could go and then I’d like row just on the end of it. And yeah, a lot of weight training, dumbbells. I’ve got like I think they’re half a kilogram maybe and I just do some like curls with those and things like that. 

 

Robert Muni Lofra: Oh, that’s very good then. And what about outside of the school set up, were you able to engage with any kind of physical activity outside after school clubs or any other activities?  

 

Maxwell McKnight: Yeah, so when I was maybe I think it was about year five, even though it wasn’t as such a sport, I used to do gardening club and obviously I used to dig quite a lot of holes and things like that. So, I used to always have quite a good workout from doing that. And then I would say maybe when I was in year seven or eight, I joined a rifle club, and we adapted the way that my gun was positioned on a tripod and then my arm was kind of quite tough a little bit but obviously I still had to take a little bit of the weight. So, I was actually quite good at shooting, and I did quite a lot of competitions, but yeah. 

 

Robert Muni Lofra: I think that’s a very good point because engaging with PE at school and after school clubs or other physical activities I think is a key point of many of our patients having an active or positive relation with physical activity. I think if at that point the effort is made to include children in PE lessons, adapting of course the activities or joining activities after school, it makes a huge difference in how people relate to physical activity. So, I think these are two very good points from you and probably that brings us to now, I don’t know if you would like to share your exercise plan?  

 

Maxwell McKnight: Yeah, no. Let me do it. I’ve got a on the floor one and I’ve got a in my chair one, so I guess I’ll start off with on the floor. Let’s just share my second screen. 

 

Robert Muni Lofra: And if you can tell us what it is you do. 

 

Maxwell McKnight: Can you see that?  

 

Robert Muni Lofra: Yeah. 

 

Maxwell McKnight: All right, perfect. So we’ll go from start, I guess. So, this is like the sit mat on the floor. I pause it at different points. 

 

Robert Muni Lofra: Yeah. 

 

Maxwell McKnight: This kind of sit mat on the floor, so this is just me working my legs. Without the sit mat, I can’t really move my legs forwards and backwards, so it just helps them kind of slide backwards and forwards. And this I find really gets my heart going especially when I pair it with my arms as well because I kind of find it hard to like to get a sweat sometimes. I’m doing all of this like resistance training, but I really want to get pumped. Just keeps me going. 

 

Robert Muni Lofra: That’s a very good point because I think it’s one of the challenges as you were saying and get kind of the endurance exercise and get your heartbeat going and that’s a very good point. 

 

Maxwell McKnight: Yeah, definitely. And this is just with a band, so a bit of resistance. I’ve got three different bands. I’ve kind of got a see-through one. I’ve got this yellow one and I’ve got a green one, and the green one is the hardest one. Got that in probably year seven from my physiotherapist at the time, which is probably the best bit of equipment that I’ve ever got for exercising really. Really like it. This is just bringing my knees in, so I guess with SMA, there’s quite a lot of kind of hip issues over the years especially with bringing my hips in and my hips are dislocated and so if I find if I don’t kind of strengthen them, they just kind of drift about all the time. This is just trying to strengthen them and bring them in, and I find if I do this more often, then I get less hip pain as well, so this is just quite a good one and then this is… Yeah. 

 

Robert Muni Lofra: That’s another very good point, keeping certain joints active and as fit as you can keep them that can help with pain, and hip is a very good example. 

 

Maxwell McKnight: Yeah, no, I think out of all of my joints, the hips are probably like one of the most important, not just for like exercising or keeping moving but just if you’re sitting down all the time you’ve got to make sure that these joints are actually working properly, otherwise you’re going to get pain. Yeah, so that’s a big one. This is just the opposite direction this time pushing outwards just to strengthen both sides. Now, this is just to get my arms above my head, so I guess in this, I’m working against gravity so I kind of bring them together over my head which I find really hard. This is like a really hard one for me and then just back to the top, you don’t really need anything for that. And then starfish, just getting my arms moving up and down. Obviously in my chair, I probably couldn’t lift my arm that far straight out in front of me so I guess this is like my version of it on the floor just to make it easier and so I can actually get those muscles moving, yeah. And then this is above my head with a band. 

 

Robert Muni Lofra: Yeah, that’s another very good point trying to find movements that you might struggle to do in certain positions. And certain other positions are much doable for you, and you can add that resistance to it. That’s another very good point. 

 

Maxwell McKnight: Yeah, I guess like with exercise, like you find your own way of doing it in a way, which is something that I’ve definitely found. And this is just up in the air so same thing obviously. Let me just rewind that a little bit. Obviously in my chair, holding my arm straight out in front of me, it’s going to be so hard. But laying down again, this just makes it way more doable. And actually, now with Cassie, my carer who moves the hands. I can keep my arm up in the air for maybe like a second or two but she’s just really grabbing my elbow so my arm doesn’t collapse here and obviously you can have as much strength holding it up as you need for that one. But yeah, that’s really my floor routine there. I’ve got a… 

 

Robert Muni Lofra: Very good. 

 

Maxwell McKnight: Thank you. Thank you. Yeah, so let me, I’ve got another one which I think is this one. Should we go through this one too, in the chat? We might as well. 

 

Robert Muni Lofra: Yeah, I think it’ll be good. Yeah. 

 

Maxwell McKnight: So, this is probably one of the best bits of equipment that I’ve ever bought actually, this little hand bike. I love it. And you can get electric ones as well which I didn’t know about, which actually helps you turn them if you can’t turn them all the way. I don’t know. I know Robert, is it worth moving even if you’re not doing it yourself that much or?  

 

Robert Muni Lofra: Definitely. Definitely. Yes. And there’s we can talk about that. I wanted you to go through the sort of different exercise that you do to then to give a bit of background explanation about different types of exercise. But you know, moving has the benefit of pumping blood into your different muscles, moving your joints, warming up, that is definitely a benefit. But also getting your heart rate going and if to do that movement you physically have significant difficulties to do it, that kind of challenge your muscles like let’s say a bit too much. Having some assistance can make the movement much smoother and target more your heart rate. But definitely yes. 

 

Maxwell McKnight: Perfect. Yeah. Yeah. So, this has no electric. This is just me doing it and obviously you can turn the bit on the top to change the kind of resistance. So yeah, that’s just me doing it. I normally do it for maybe say 10 minutes, 20 minutes. And I find also if I kind of move my whole body as well, I’m moving my core as well, so that kind of helps. 

 

Robert Muni Lofra: Exactly. Yeah. 

 

Maxwell McKnight: So, these are the three bands that I was talking about earlier. Great little things they are. I won’t tell you what the one on the left looks like, but we’ll keep on going. So, this is the rowing, that I love doing. This is the harder band. So, this is like really, obviously as I’m pulling back it’s, I’m having to keep my core in my chair as well. It’s pulling back my arms. So, this one tires me out pretty quickly, I have to say. I think my core it makes me turn a little bit red, and this is kind of upwards, I guess this is a type of bicep curl in a way. But I always try and make sure I aim the band for the same point in my wheelchair so I’m kind of doing it in the same position every time. Cause that’s one thing that I’ve noticed like obviously when I went to the hospitals and everything, you know, don’t cheat on exercises. You can cheat like really easily on exercises. Like if I was trying to move my hand, I’d crawl with my fingers and this and that. So, like, I guess just being consistent with how you’re doing it is probably like quite a big one that I’ve found. And try not to change it. 

 

Robert Muni Lofra: And also give the awareness of how hard it is for you because you… 

 

Maxwell McKnight: Yeah. 

 

Robert Muni Lofra: If you keep changing the way you do the exercise, it’s difficult to compare or how am I doing, you know, when compared to a couple of days ago or last week or two months ago. If you are consistent in the way you, do it is also a good reference of how things are progressing. 

 

Maxwell McKnight: Yeah, 100%. I guess if I do it in a slightly different position, it might be way easier but if I do it in another one, it might be harder. So actually, you said it, it would just be really hard to gauge actually how I’m doing. 

 

Robert Muni Lofra: Yeah. 

 

Maxwell McKnight: Yeah. Let’s go on. This one, so this is probably one of the hardest ones. While I’m doing this, I’m trying to hold my elbow off of my leg while puddling across my body. So, it’s kind of like my shoulder. And as I do the exercise, my elbow gets lower and lower and lower and lower but I kind of just do it until eventually my arm’s just like dragging along my leg. But yeah, this one definitely takes it out of me. But this is probably one of my favorites actually. 

 

Robert Muni Lofra: That is a very good example of strengthening training and how performing one specific exercise can lead to specific fatigue for certain muscles and then your performance kind of gets worse and worse and worse. 

 

Maxwell McKnight: Yeah. Yeah. Yeah. 

 

Robert Muni Lofra: It’s not that you’re cheating, it’s that you wore out your muscle, which is a very good thing. And then it’s the time, okay, well I’m done. And that compensation or that adaptation to the exercise might come at repetition five one day, repetition 10 the other day, or 12. And that’s a good reference. It’s a really, really good work. Well done. 

 

Maxwell McKnight: Yeah. Thank you. Thank you. Yeah, no, that one is definitely the one takes out of me the most. This one is I guess like when I’m doing all of my exercises, sometimes I forget about the weakest part of me which is actually my wrists because obviously my grip is fine, but just that holding my wrist up is quite a hard thing to do. So, this is just kind of pulling out and obviously I could pull it out a lot further but it’s about keeping my wrist up at the same time which I find really, really hard. So yeah. This one is just pulling straight down, one of my favorite ones working with the gravity and then a little bit of punching at the end. 

 

Maxwell McKnight: I do like punching, boxing because you’ve got to keep your arm up at the same time. And you can make it fun. I think you’ve got to make exercise fun sometimes. And my arms are left, left, right, left, right. It makes it fun and enjoyable. And as you said earlier with getting involved with PE and stuff, you’ve got to make it fun. You’ve got to make those memories excitable. So yeah, that’s the end of my video. [chuckle] 

 

Robert Muni Lofra: Well, that’s very good. And just to give a bit of background how we normally approach the subject of exercise, so we’re going to recommend exercise for three reasons. One is to regain or maintain the mobility of joints and muscles. We normally target it with stretches. We’ve seen a few examples of your stretching. And this requires a frequency of probably daily stretches and often… And with SMA or the presence of contractures, we need stretches but also the use of splints that will bring the joints at the desirable position for a certain amount of time. The second type of exercise that we talk about is strengthening exercise. And in here, the idea is to try to keep the muscles as strong as possible. And this type of exercise requires you to do a certain activity for a number of limited repetitions that brings you to trigger fatigue. Ideally, we would like to be in between 10, 12, even 15 repetitions to be on the safe side. It’s all right to go to weight, etcetera. And we’ve seen many examples using resisting bands, but the idea of this is to do a limited number of repetitions. You’re not really working much on strength if you’re able to do 100 repetitions. There are different types, but in general terms, the idea is this one. 

 

Robert Muni Lofra: And then the third type is endurance, being able to do a certain activity for a prolonged period of time. And here, the target is your heart rate and you’re breathing. And again, we’ve seen many examples. 

 

Maxwell McKnight: Is that more the hand bike, for example, the… 

 

Robert Muni Lofra: The hand bike, but also the rowing exercise, or any exercise that you do for a period of time that is more than 10, 12 repetitions for a few minutes. We normally measure endurance activity for a few minutes. And I think you hit the nail on the head when you said, “I get my heart pumping. I get a little sweat.” This is exactly what we’re aiming with endurance. Every single type of exercise will have a bit of each of the three types, but we talk about exercise targeting mainly one type of exercise. 

 

Maxwell McKnight: The main one? So, for the bands, for example, if I went to a higher band, could I change something from endurance to strength building if I used a higher resistance and maybe I went from doing like 20 to only doing 5, for example?  

 

Robert Muni Lofra: So, the lower you go in repetition, the more specifically you target strength. It’s not, let’s say, a direct rule. But the concept is that the lower you go in repetition, the more you target strength. The longer you go in repetition, especially when it gets to, “I’d be able to do this for 5 minutes,” your kind of pulling more on the endurance side. Playing with resistance and playing with number of repetitions will help to, different number of exercises, make it more enjoyable. It’s very boring to always do the same exercise, so you play with resistance and the way you position yourself. A bit what you were saying, “I’m unable to do this in my chair.” But if I do it lying down, you lower the intensity of the exercise and you make it more accessible for you and that helps you to go further in your range, in your elbows on things like this. So, I think it’s a very good way to play around. 

 

Robert Muni Lofra: And this is exactly what I was coming from before when we were talking about PE. Because you have this relation with the, “Okay, this is the plan. Let’s adapt it.” This is what exercise is about, especially coming from people with some kind of limitations in their mobility. “This is the exercise. This is what I would like to do. Let’s adapt it and do it in my own way.” I think there are many things that you were doing in your exercise plans that are really, really good. 

 

Maxwell McKnight: Yeah. Thank you. I guess you can. Just, there’s so many different things. Like I didn’t realise they did dumbbells that were so light. Or I didn’t even realise about the THERABANDs until a couple of years ago. So, I think there is actually quite a lot of different equipment that is out there for people, but sometimes they just don’t realise it as well. 

 

Robert Muni Lofra: Exactly. I think the rubber bands there and the elastic bands are a great resource. They are accessible. You can find them in some of these big supermarkets, even you don’t have to go to a specialised place. And another thing that I think is really, really good about your exercise plan is there’s a lot of the exercise that you do that have a direct translation as a benefit for activities that you do, the biceps curl, bringing your hand to your mouth has… 

 

Maxwell McKnight: Like eating or a cup, drinking. Yeah. 

 

Robert Muni Lofra: Eating, drinking, scratching your hair that we do hundreds of actions hand to mouth every day to working in exercise that have a direct implication or a direct benefit on some of these activities is definitely a good thing to do. Pulling across, you don’t realise but pulling across and pushing forward and the reach has many implications. When you work on your desk, reaching for things. And the idea is that the exercise, especially in the context of SMAs, we want exercise to help you do what you’re currently doing and make it easier. We do know that we need to set the right expectations when we talk in the context of SMA or any neuromuscular conditions, but we do know that the potential of building up muscle and improving significantly with exercise is not really on the table. But if we can get exercise to make what you’re currently doing much easier… 

 

Maxwell McKnight: Just trying to maintain it as well, I guess. 

 

Robert Muni Lofra: Exactly. Exactly. And with this, maintaining or limiting the progression of the condition is a very good example. 

 

Maxwell McKnight: I guess for me, and they always said, if you don’t use it, you’re going to lose it. So, I just try and do as much as I can and just try and get all of my muscle groups working. And as you said, it’s about the most important ones. The ones that you are going to use every day. Otherwise, I guess it wouldn’t be pointless the exercise, but at the same time you want it to actually impacts your life. 

 

Robert Muni Lofra: Exactly. Exactly. 

 

Maxwell McKnight: So, no big point in doing what I have been. I actually, funny enough, I actually have a video of some stretches for my hands. I don’t know if I should play that one as well cause… 

 

Robert Muni Lofra: Yeah. 

 

Maxwell McKnight: Obviously after my exercise or before actually, I find if I stretch, it makes exercising easier cause I have a bigger range sometimes. 

 

Robert Muni Lofra: That’s absolutely true. I think this is something to understand about stretches, when we stretch, not only people living with SMA, anybody, when we stretch the muscles, tendons and all the soft tissues behave like a rubber band. You warm them up and they are more easily stretchable to a desirable range. That makes that range, if my elbow goes up to here, that makes that end range that is a bit tight when you are cold, let’s say, more available when you warm up. And this is a very good example where you’re saying, “I stretch first or my arms and my hands feel freer to move and then I do my exercises,” and that is the perfect time, and then to combine it, if we’re talking about legs or ankles specifically to combine it then with the use of the splints. Because if that warm-up effect that then potentially using the splints will feel much easier and much more comfortable. And then the prolonged stretch that the splints will give you will do the desirable effect in protecting your joints. 

 

Maxwell McKnight: 100%. I think when I stretch my legs, obviously I think if I didn’t stretch my legs compared to when I stretch my legs, my workout is way better because I can extend my leg a lot farther and then bring it back in. And so, like that’s a lot more energy for me to use. So yeah, it just makes it a lot better. And I luckily with the stretching, I actually have these like night, I don’t know if you’ve seen them before, but they’re like nighttime splints with a little spring on them. And they kind of stretch my legs throughout the night, so I don’t really need to do too much of it in the daytime. 

 

Robert Muni Lofra: Yeah. That’s very good. And that brings you back to the point of the different types of exercise. If you do the stretches, let’s say that every repetition that you do for your strengthening exercise contributes a bit to the stretches, if that makes sense. 

 

Maxwell McKnight: Yeah, yeah. 

 

Robert Muni Lofra: Well, if your strengthening exercise has a more limited range, not much contribution on the range. So, it’s really good to combine them all and get the most out of each single repetition that you do. 

 

Maxwell McKnight: Perfect. Let me share my screen again just to show you this. 

 

Robert Muni Lofra: Yeah. 

 

Maxwell McKnight: Think it’s this one. So, this one is literally just putting my hand on the table and then moving forwards on it. And so, I’m pushing down to my hand. So, it stretches all the way through kind of the back of, let me go back to that, the back of my hand here. And like I’ve really fit it through all of my fingers and even down my arm as well if I straighten my arm properly. 

 

Robert Muni Lofra: Yeah. 

 

Maxwell McKnight: Like this one, especially for gripping, anything like that, like my hands just feel awake afterwards, I guess. [laughter] 

 

Robert Muni Lofra: Yeah, that’s a very good objective too, describes what stretches can do. 

 

Maxwell McKnight: Just fast forward. This one, I do a little bit of a rotate. 

 

Robert Muni Lofra: Okay. 

 

Maxwell McKnight: It’s just going down my arm and obviously as you can see here, the stretch before kind of leads onto this one because when I twist my arm, my fingers then contract. 

 

Robert Muni Lofra: Yeah. 

 

Maxwell McKnight: So, like I’ve got to do both stretches to really make this one work properly. 

 

Robert Muni Lofra: Yeah. 

 

Maxwell McKnight: And that’s another one that I do before it. And this is just another kind of angle of that one. There another one? This is, yeah, so this is with the fingers involved, so I get them sandwiched in between just to keep them straight. And then to roll over. But yeah, no, I love doing these, they’re just the relief afterwards as well just feels so good. Yeah. 

 

Robert Muni Lofra: Very good. So, I really like the word awaking your joints with the stretches. 

 

Maxwell McKnight: Yeah. 

 

Robert Muni Lofra: I’ll take that. I’ll let you to say that. So, this kind of leads to my next point it’s something I wanted to discuss with you, I think right now but also over the years, how exercise has made you feel whilst you’re doing it, but also afterwards, what do you get out of exercise?  

 

Maxwell McKnight: I guess for me it’s, it links to everything. After I’ve done it, I just feel so much more awake. I guess on the mental health side of it, it makes me just feel good about myself as well. 

 

Robert Muni Lofra: Okay. 

 

Maxwell McKnight: That I’m making a real difference or trying to make a difference to how my strength is, how I feel. And I think a big one is also maintaining my weight as well. Cause with SMA, like it can be really hard to maintain your weight sometimes. So just getting active, getting, doing this and that, it just really all helps to kind of have that mental clarity in a way. And then I guess stretching and exercising just makes me able to be more confident when I’m doing certain activities. Just like eating, for example. 

 

Robert Muni Lofra: Yeah. 

 

Maxwell McKnight: I find that if I’ve done a workout that day, by the evening, it’s kind of weird cause when I’m, I don’t actually feel that tired. I feel like I’ve woken my body up. Like I can actually do more things throughout the day, which is quite good. And then after that I get a way better night’s sleep as well. So just like all plays into just feeling way better. But yes, it’s, even if I don’t do it every day, even if it’s three times a week, it still, I think anything that you do is a good thing. 

 

Robert Muni Lofra: Absolutely. And I think that describes a very healthy relationship with exercise for all the points that you’ve made, the benefit of feeling your body more awake, the, let’s say the immediate benefit of feeling your body more awake and more recharged that sort of stick. But also from the mental health perspective, being able to balance, we talk often about mental fatigue and physical fatigue. You are mentally exhausted, but you have a lot of energy in your body and your mind struggles to get to go to rest at night. And there’s a lot of thoughts, a lot of things that are going on your head. Work, school, whatever it is, because your body’s not physically tired, it’s difficult to pair them up and just shut down to go to sleep. So, exercise at times is that effort to kind of shut down your head, your mind, sorry, and focus on your body and then pair them up and then, okay, now I’m in peace. Let’s say I’ll go to sleep and that’s another very good example. And also, what you said about having a direct impact on your daily life activities, feeling that what you normally do feels easier because of the exercise. So that’s really good. 

 

Maxwell McKnight: And then, I guess something that I wanted to say as well was just, I guess when you are older, obviously I’m 19 now, I feel the benefits in that way, but obviously when I was a child, I didn’t always want to do my exercise. 

 

Robert Muni Lofra: Thank you for this. Thank you thank you.  

 

Maxwell McKnight: And so, in a way I think it’s good. Yeah. You have a different relationship with exercise, I feel like, as you get older. And I think my parents tried to make it as fun as possible I guess when I was doing exercise when I was younger. And I think a big one, I’m not going to, oh, I wouldn’t take all the credit, but when I was younger, I used to, you know the console, the Wii?  

 

Robert Muni Lofra: Yeah. 

 

Maxwell McKnight: Yeah. So, using the Wii, Wii Sports and stuff like that. And I went back to Great Ormond Street and my mom said, “Maxwell was doing four hours a day of baseball on the Wii, and then suddenly there was so many Wiis in Great Ormond Street.” You could imagine. So, [laughter] I wouldn’t take the credit on that one, but… 

 

Robert Muni Lofra: No, no, but it’s a very good example of something you were touching on before, how important it is to make exercise enjoyable and make it fun. And the younger athlete the is, the more important Ness, less structured, more fun, just get your heart going and enjoying what you’re doing. But it is exactly the point that we’re doing at the beginning about how important it’s to establish this healthy relationship, making people living with SMA feeling that they have a role that they can do exercise and have fun with it, and have that capacity to engage and enjoy it. I think that that’s a big part of it. And your videos and your kind of the story, life story that you just told us is a good example of it. And how much, let’s say, children see differently exercise from parents. [laughter] definitely worth investment. And if you can create this relation with exercises with your kids, I think that the chances of becoming a young adult like you are and the way you are and relate to exercise are much more likely. 

 

Maxwell McKnight: Yeah. I appreciate what you said. Thank you. But I guess there’s probably like will be parents watching this. And it’ll probably mainly be parents, and I would say, obviously me back then, obviously not wanting to do exercise, I guess in a way it’s very important to get your child doing it. And I, looking back at my parents, I just kind of thanked them for everything they did cause not only does it make me feel better, but obviously I’m probably now stronger than I would’ve been if I didn’t do anything at all. So, I guess like my quality of life now is better because my parents made me do it. 

 

Robert Muni Lofra: Yeah. 

 

Maxwell McKnight: So yeah. [laughter] 

 

Robert Muni Lofra: Can you put that in writing, and we print them?  

 

Maxwell McKnight: Oh, yeah. You can take it everywhere. You can take it everywhere. 

 

Robert Muni Lofra: At the Clinical practice, Maxwell words and why it’s worth. And I wanted to also to touch in something else that, have you ever experienced a, let’s say a negative effect from exercise because many people living with SMA or other neuromuscular condition has a fear of exercise, kind of warming up my muscles and making the condition worse. Have you ever experienced that doing exercise has been a bit of a detrimental to your… Even if momentarily, if one day you’ve not a bit too much. 

 

Maxwell McKnight: Yeah. No, I think it’s never been detrimental, but I would say there’s been times where maybe I’ve got too excited and done too much. Like when you’re in the flow of it, it’s important not to go… Set yourself boundaries maybe, and not go past them. There’s been days where I felt very tired and achy the day before but, in a way, I think that’s a good thing. Like that shows that you’ve been working those muscles, you’re doing a good job. In a way if I don’t get achy muscles, I haven’t been doing it right. 

 

Robert Muni Lofra: No pain no gain.  

 

Maxwell McKnight: Exactly. Exactly. I don’t know if I liked my physiotherapist saying that when I was younger, but yeah. Yeah, no, totally. I haven’t had really any negative. 

 

Robert Muni Lofra: Yeah. 

 

Maxwell McKnight: Really real negative impacts, but I’d say just, you know, if you’re starting off, don’t overdo it straight away. You just take it easy. You warm yourself up. Yeah. 

 

Robert Muni Lofra: Yeah, I think you’re absolutely right and fear comes from, you know, old fashioned advice that was giving at the beginning because you know, the rationale behind it, if you’re absolutely, you know, understandable you have a problem that affects, a condition that affects your muscle fibers or motor neurons or whatever. By doing more, you might damage it, but there’s increasing body of evidence that prove that that is completely wrong. That I, and I like your example of your muscle feeling sore that they have to, and so on. And this is not what we are aiming for, and this is something that ideally, we don’t want to happen in a regular basis. But there’s absolutely nothing wrong in happening once or twice even a month, I would say. 

 

Robert Muni Lofra: Because it’s a sign of it what you’re saying that you work on your muscles, and they’ve done a bit too much. If you do exercise, let’s say, I exercise on a Friday for whichever reason. I only exercise on a Friday and Saturday. I’m just, you know, flat and I can’t do much. That’s not a healthy relation with exercise. We want to spread it and make it a bit what you’re saying. I enjoy, I feel like my muscles are tired, that they actually feel recovered. It’s right I would say, to feel your muscles but still able to do what you would normally do. And if you preserve those principles and your relationship with exercise, there’s absolutely no chance that you will make your condition worse and the benefits, immediate benefits on your muscles, but also on your mental health and energy levels very well explained by yourself and your personal experience. 

 

Maxwell McKnight: Yeah, definitely. What you were saying actually about doing too much and then the next day just being completely out of it. I think when I was younger, I think as I was just getting bigger and bigger, I definitely felt that and because I would always join in with PE. I try and keep up with everybody else and eventually you get to that point where it’s like, actually I can’t keep up every single day doing this, like physical exercise. So, you know, I’d come back, and I think I wouldn’t eat my dinner because I’d be too tired to eat it. And that’s when it got to the point where, you know, don’t, stop, just relax. 

 

Robert Muni Lofra: Yeah. 

 

Maxwell McKnight: Yeah, so I, I definitely see it on that one. Just don’t take it too far cause then it can have detrimental impact on maybe like, you know, you’re not eating enough, you’re not putting… You’re losing weight. And I think that’s like a big thing with SMA, like eating can be hard. So, if you are tired, your neck’s tired, your arms are tired, you’re not going to be able to eat as well. So, yeah. 

 

Maxwell McKnight: Exactly. And also, it’s Important to listen to your body more than me or any other professionals. Listen to your body. If your body’s not coping well with that exercise plan, you have time to rethink about it, go to back to your, you know, specialist and discuss what you’re currently doing, what can you change? If you don’t find your own way, a bit what we were saying before about changing the resistance or the position, what you do, the exercises and that can decrease the intensity of the exercise. If you can’t find your way to adapt it and make it more doable for you, just go back to the specialist and discuss this. 

 

Robert Muni Lofra: But should be the exception. I don’t think it’s the regular thing. But to clear out any fears from parents or patients with living with SMA, or other neuromuscular conditions, you know, if you have that in mind, I should feel recovered the day after and that’s absolutely fine. Go for it. 

 

Maxwell McKnight: Yeah, and I think as you said, go back to a specialist and find another way. Like my specialist made like a whole action plan of my exercise routine. So, I think that always willing to help and put something together. So yeah. 

 

Robert Muni Lofra: Yeah, definitely. 

 

Maxwell McKnight: That’s everything I really wanted to talk about. Anything that you wanted to add or?  

 

Robert Muni Lofra: No, I think as a, as a physiotherapist, we often, you know, encourage people to do exercise and it’s difficult because there’s many, you know, if you look at the figures of the general population living with SMA or anything, exposure to exercise is very limited. So, there’s many challenges. We all have busy lives and busy schedules and it’s time to find, it’s difficult to find time to exercise, but having examples like you that it’s a very positive and healthy relationship with exercise, are very encouraging. And I hope many people can take the example from you. And I think you’ve done a great job and whoever’s been looking after you from parents, physiotherapists and all the rest of the professionals have done a really good job. So, hats off to them. 

 

Maxwell McKnight: Yeah. 

 

Robert Muni Lofra: And yeah, if anybody has any further questions, you can go to your specialist. I’m more than happy to be contacted. But thank you very much for your example and thanks for giving the opportunity to have a chat around it. 

 

Maxwell McKnight: Yeah, thank you. It’s been amazing. Thank you so much for coming on and just adding so much information. I think it’s really important. And yeah, as you said, people can contact you, so yeah. Well, that will be linked below on the page that this is uploaded to, so yeah. Perfect. Yeah. Thank you for watching everybody. 

 

Robert Muni Lofra: Thanks everyone. Bye.