My name is Robert Muni-Lofra. I’m a physio in Newcastle. And I’m going to be joined together with Katie Nevin that works in Sheffield and Anna that works in Manchester. We want this to be as useful as possible for all of you. It’s always difficult to get such a big subject right. So we’ll do our best. But by all means, the idea of today is that you get the most out of this.

To do this, we’ve run a little survey. Maybe some of you had replied to that survey. So I’ll be presenting a bit the results on this survey to understand where the problem is. We do know that exercise is not as popular as it should be across everybody, but also for people living with SMA. I’ll be presenting a bit those results.

And then I’ll hand it over to Anna who will be talking about, what do we do when we talk about exercise, a few definitions, which is often very helpful to set the scene and define types of exercise.

And then Katy will be talking about resources and more practical stuff. And initially, the idea that we had in mind was to break the room in different groups to have more, let’s say, personalized advice. And we initially thought to divide in, non-sitters, sitters and walkers because, of course, the relevance of one type of exercise or the other varies slightly across the functional groups. But we’re going to play it by ear and probably we’re going to split in three groups and we’re going to have more small discussions at the end of the session.

So as I was saying, we’ve circulated a survey about access to exercise. And in this survey, there was a good split of in between adult patients and pediatric patients. Of course, the paediatrics were mainly completed by the parents or carers. We had a good split in between SMA types. Again, more prominence of paediatric patients in the type one. And we had a good spread across that, let’s say, different functional levels from those who are able to walk without aids up until those who are unable to sit or wheelchair users. This is just to show that the survey was completed by – spread across the different, aspects of the disease. And what we found is not surprising.

So this survey was based on the COMBI model. The COMBI model is a model that tries to help in changing behaviours,not exercise specific. And basically, it’s looking at three aspects, the initials stand for these – the capability, the opportunity, and the motivation.

And basically, with a series of questions that you’ve replied, what we’re trying to assess is, is it you feeling able to exercise who is the main limitation to access exercise? Is it you not feeling that you have the opportunity? I don’t have access to the right facilities. I don’t have the right equipment. I don’t have the right time that is limiting the main access to exercise. Or is the motivation? I don’t feel like exercising. I can’t see the point or it doesn’t come naturally. It’s a huge effort at my end that I need to put to be motivated to do exercise.

So based on those results, basically, we’ve seen is that in looking at the specific results for adults, is that the low scores, it was mainly around opportunity, not having access to the funds, facilities, or the time to move into exercise. This was one of the lowest scores.

And then the second lowest score was the social opportunity. And it was said that the lack of encouragement from healthcare professionals to do this, it was part of the problem. So we wanted to target today, especially this session, to tackle this, to try to resolve this. We will talk about the benefits of exercise. So hopefully the message of exercise is good for you will come across. But also we want to discuss opportunities for all of you independently of your level of abilities to take part in exercise. It looks like everybody knows that exercise is good, so everybody is keen to do it. And the desire to be active, they both were very highly scored. And that’s not the problem. So let’s try to use today to put some examples to help all of you. And with this, I’ll hand it over to Anna to talk about the benefits of exercise….

Ms Anna Rutherford: So we all know SMA is a very complex and varied condition. I can look across this room and I can see people with lots of varying abilities. And I think since the introduction of treatments, we’re seeing much more variation. And as was discussed in the last session, we can’t just rely on those three types, four types that we have read so much about in the literature. Things are changing and it’s a very changing picture for healthcare professionals when we talk about ability with SMA.

Physical ability can depend on age. It can depend on your genetics. It can depend on what treatment you’re on, but also many other factors. We are not, everybody in this room is not just SMA. There are other things that you are dealing with in your personal lives, in your social lives, with your health. This is a complex issue. And limitations vary from your own levels of motivation, as Robert’s discussed, to the physical and financial support available.

I know within my patient group in Manchester, one of the common frustrations is a lack of support or a lack of funds for PA time to actually facilitate exercise. So hopefully we’ll be able to come up with some ideas that can help you guys access exercise independently as well.

And finally, everyone in this room can benefit from exercise, including the three of us on the stage today. Certainly myself.

What I’d like us to do is to start thinking beyond muscle. We don’t have a huge amount of evidence around exercise specifically in SMA and in treated SMA. We can’t give you a really specific answer about what type of exercise to do, how much to do, what resistance to use. What we know is that for everybody, exercise is good and there are wider health benefits than just the muscle. Just because we have a condition that affects the motor neurons doesn’t protect us from things like dementia, fractures, depression, cardiovascular disease, diabetes, and cancers. And what we do know is that exercise is very beneficial in reducing the risk of all of these health complaints. So it’s important to think about that too.

So what’s the difference between physical activity and exercise? So physical activity is any voluntary body movement produced by your skeletal muscles. So this can include leisure activities, so going to a cafe, doing anything, using your hand to control your powered wheelchair. You are getting some physical movement. Activities of daily living, so getting washed, dressed, preparing meals, feeding yourself, and occupation activities, so using a keyboard, writing, and so on.

Exercise is more about planning and structuring your physical activity. So it’s performed specifically to improve or maintain one or more components of physical fitness. Ideally, what we would like is for that to be goal-driven, so to give real purpose to your exercise. So we start to think about what is your goal.

Some people will have a goal to improve their stamina and their endurance. Some people will want to improve their strength and their functional ability. Others may want to improve their flexibility, their ability to be positioned in a chair or a certain piece of equipment, or to be able to wear shoes or their orthotics. Ideally, we want your goal to be personal to you, and we want to actually monitor progress. We don’t just want to set a goal and forget about it. It’s important to think about how you’re getting on and, if necessary, change what you’re doing to achieve your goal. So that’s the review and adapt part.

If you want to improve your stamina and your exercise tolerance, we’d encourage aerobic exercise, so not necessarily adding resistance. If you want to improve strength, you need to add some resistance, and that could just be gravity. And if you want to improve flexibility, there needs to be a stretch to the muscle tissue. And all kinds of exercise, hopefully, will bring some psychological and social benefit.

So just to kind of break down those three different types of exercise, aerobic exercise is generally fairly long in duration. We want to get the cardiovascular system working, so it’s low intensity. We’d expect you to be able to do it for a certain amount of time. It’s a low amount of movement, but it’s keeping going, basically. And we want to kind of like, this might be an activity that you want to keep going over time. So I don’t know if you had a specific idea, Robert. I think you added a note on that. Like powering your, like self-propelling wheelchair, for example. It’s not about high intensity. It’s about being able to have that duration to the activity.

Ms Katie Nevin: Yeah, and if so if we’re thinking like a specific type, I have some patients who do have that go to the pool. It might be that they can move their legs in the pool while holding onto the side or walking up and down in the pool because they’re supported by the water buoyancy. It might be also that my SMA3 patients, even though they’re a wheelchair user, might have good upper limb function and be able to use a and bike. So they might be able to pedal using a hand bike on a table in front of them. And we’re trying to build up the time doing that. And if anybody has ever tried a hand bike, it gets you really out of breath. I can feel my heart and lungs working harder. It’s increasing my respiratory rate. So that would be a good example of trying to build up that aerobic fitness, which we know is good for our heart and lungs.

Ms Anna Rutherford: So the next one we look at is resistance exercise.

So resistance exercise is moving towards a goal of increased strength of the muscle. So we’re loading the muscle tissue. We need to stress the muscle tissue to make the body create more muscle cells. So it’s important that this is quite high intensity in terms of what we’re putting the muscle tissue through. So it can be a short duration, however, when you think of those bodybuilders when they’re trying to bulk up muscles, they tend to do everything quick and fast. It’s not about maintaining their exercise over a long period of time. It’s about really weighting, like loading the muscle tissue. Obviously within the limits of safety.

So we do not have a huge amount of evidence or any actual proper evidence about how much we can load muscle tissue in neuromuscular diseases. And I think what we’re forced then to do is give quite vague advice, but try and be sensible and say, listen to your own body. Listen to what signals you’re receiving. And if you feel an exercise is too much, then we would just ask you to be sensible and not do it. If you’re getting sharp pain during exercise, don’t do it.

Saying that it’s important to know that exercise is stressing the body. And when we load a muscle, there is going to be some damage to that muscle tissue. That is how muscles grow. We cause a little bit of damage and they repair. So it’s really important to understand that after you’ve done some resistance exercise, it’s completely normal to have what we call DOMS, delayed onset muscle soreness. So within two to three days, you’d expect to get some stiffness and soreness, and that’s completely normal. When you’re experiencing pain during the exercise, that’s a sign that you’ve done too much.

With resistance exercise, it’s a variable amount of movement. But like we said, it’s a higher intensity, but for a shorter duration.

And then finally, stretching exercise. We’re all fairly familiar with stretching. I’m sure you’re all doing your stretches every day, three or four times a day, spending lots of time. And I know when I do my SMA reach paperwork, I ask the stretching question and everybody starts looking around the room or making comments about the aircon or something. And so I know stretching isn’t fun. Stretching is uncomfortable. The very nature of stretching is that we are pulling your muscles. It’s not a pleasant experience.

But the goal is mobility. The goal is maintaining your joints. And there is an importance to that. We want you to be able to be comfortable in your chair or lying on a bed. I have patients coming to me in their 40s and 50s asking for referrals to orthopedic surgeons because they just want to get their leg straight in bed. They just want to be able to get into a better position in their wheelchair.

I understand when people come to me at the age of 17 and I say we should really try wearing these splints. It’s not high on their priority list, but we do see people further down the line trying to undo those contractures, which is not easy to do and probably not wise at that point. So with the stretching, we’re really looking for movement. We’re looking to maximize the movement we’re getting at each joint. But this is low intensity and it’s about holding stretch for a decent amount of time. Moving your body through range is good for the joint. It increases circulation. It will mobilize those muscles a little bit, but it won’t cause lengthening of the tissue. So unfortunately, we do need to hold that stretch for a while. At least 30 seconds.

Ms Katie Nevin: I’d say at least 30 seconds or longer

Ms Anna Rutherford: if possible. And that’s where splinting and orthotics come in because they of course maintain that stretch for you for longer.

Robert Muni-Lofra Just to add to that, the current evidence supports that mid-intensity or low-intensity of a stretch for a prolonged period of time is the most effective way to gain range. So doing the stretches and holding it for a relatively short period of time wouldn’t translate in an increase of the length of the muscle and soft tissue. So that’s why we need to rely also on standing frames, splints, and prolonged positioning to make the most out of the stretching.

Ms Anna Rutherford: Over to you anyway Robert

Robert Muni-Lofra: And so this is a bit of a mouthful slide that I propose and I will say, oh, we’re not going to present that, you have to do it. So it’s just an example because I generally feel like in the context of neuromuscular diseases, that one of the most beneficial effects of exercise is what I’m going to tell you.

So if you all imagine you as individual, there’s a number of tasks that you do in a daily basis that you do with relatively ease. These tasks may differ completely for every single one of you in the room, but they are tasks that you do with ease. This is the first circle.

The second circle is your comfort zone. I do this in a regular basis and there are tasks that putting a bit more effort I can do comfortably transferring to the chair and in eating and brushing my hair. There are tasks that you do in a relatively regular basis, not always, but with a relatively comfort you are able to do. That’s the second circle.

And the third circle is your maximum performance. What we all physios aim to get out of you when you come to us for the assessment, we want you to show you how good are you at doing each single task to then score it and come up with all these scales and so on and studies. So the maximum performance is how good are you at your maximum level of ability of doing a specific task.

When we train, when we do exercise, one of the potential benefits of exercise is working outside of your comfort zone. Exercise should bring you outside of your comfort zone, should get you out of breath in your chair, should kind of challenge your muscles to bring that hand to the mouth 10, 12 times that you only normally do one time. Exercise works outside of your comfort zone to try to push the limits. And one of the main benefits of exercising is potentially expanding your comfort zone.

So often when we talk with you about exercise, we often say, which are the activities that you need to do or you would like to do that are really hard work? Okay, take this activity and practice it. And practicing will make it at ease and just making the example of putting a T-shirt on. I don’t know any of you, but I normally only put a T-shirt on once a day and I take it off in the evening. So if this is an activity that you want to preserve, a very good strengthening exercise for you is putting the T-shirt 10 times on and take it off.

This is an exercise that will help you. You might not get stronger, but you will get more comfortable at doing that activity and that will increase your comfort zone. For that day, when you’re not in your regular setting, the carers are late or there’s some sort of challenging situation, you will still be able to put that T-shirt on.

So one of the main benefits that we can talk about exercise, regardless of the muscle strength, aerobic flexibility, is getting more comfortable at doing things that are important for you. And I always put two examples in high performance sports. Kicking the ball through the posts for John Wilkinson is a relatively easy situation. Doing it in that precise moment to make England world champions required a lot of concentration. Maybe for one of you, transferring from your chair to a chair in a restaurant feels like that. I do this at ease at home. But doing it in a restaurant, there’s a lot of pressure. The situations are different. I have a lot of things going on. It’s very difficult for me. But strength-wise, flexibility-wise, aerobic-wise, it’s the same method. Walking on a beam at a certain height is the same physical effort than doing this.

And the second example is Alex Hammond that climbed El Capitan with no ropes. Climbing was exactly the same effort, but doing it without ropes and knowing that if I slip, I’ll fall and die is probably what it feels for all of you to go out there without my carers, with just my wheelchair, and not having the support, not having the rope. So practicing any activity that you can think that you would like to do in any situation is another benefit of exercise, increasing your comfort zone. I do the same thing that I do at home, but I can do it at the restaurant, I can do it at my friends, I can do it anywhere. This is another potential benefit of exercise. And I’ll hand it back over to you all. I’ll do this. I’ll do it?

Ms Anna Rutherford: Yeah, cool.

Robert Muni-Lofra: Yeah, so thinking about this, thinking about aerobic strengthening and stretching, we thought that was good to guide a bit the discussion afterwards, that probably it’s fair to say that not all priorities are the same for every single one of you.

So if we think about those of you that require some support to sit, you’re unable to sit independently, probably fatigue management is your main goal. I would like to be able to feed myself. I would like to be able to hold my head. There are a number of activities that you do on a regular basis in your day-to-day and that you would like to preserve. So managing fatigue, this is one potential goal that you could focus on.

And flexibility, we’ve talked about how contractures and the role of contractures in your daily life and how they might restrain certain tasks. So keeping your joints flexible to reach and do as many activities as you can. So probably for the non-sitters group, the main priorities are managing fatigue and managing your flexibility.

For the group that are able to sit, probably fatigue management is also a slightly different level, is another priority for you, trying to be able to do those tasks for a prolonged period of time throughout the day and be involved in that is one of your goals. Strength translated in function, being able to transfer from the chair to the bed, being able to bring the hand to the mouth, being able to put that T-shirt on, being able to change the position in the chair. All these are tasks that require some strength, so working on that and, of course, flexibility, mainly around your elbows and knees and ankles.

And for those who are able to walk independently, definitely stamina, working on stretching those metres that you’re able to walk throughout the day and managing that is another priority, together with the strength and function. And probably in this group, reducing the number of falls, contractures are not so much of a problem, a bit of a problem, but there’s many ways that they can be supported.

So we wanted to kind of set the goals for each functional group and work on this. So I don’t know if it works, but if you want to split in functional groups later on, it’s entirely up to you. If it’s difficult, we’ll just split in three groups and we discuss, but we were mindful that if we wanted to get the most out of this session, it might not be relevant to discuss individual goals with very significant lifestyles across the room. We will do that in a minute, but I’ll hand it over to Katie who will tell you about the specific resources that you can use.

Ms Katie Nevin: Fantastic, thank you.

So we just wanted to put in some of the things that are out there on the internet, whether people are aware or not, but we kind of just wanted to highlight them as areas to kind of signpost you to a little bit.

So MDUK have got a great kind of basic exercise and physical activity advice sheet. So it kind of breaks down what the benefits are, how much, the things to watch out for, so not pushing into too much pain or discomfort. we shouldn’t have muscle aches lasting over two, three days, those kind of areas. So if you want something that we’ve kind of discussed today of the very basic general do’s and don’ts, it’s on the MDUK exercise guidelines. And if you type into their search exercise, it comes up straight away.

And then on the SMA UK website, Robert has done a talk again. I think it’s a YouTube video, isn’t it? It’s not a podcast. But again, talking about exercise and SMA. So again, you can listen to that after today’s event for further advice and kind of support.

And then some of the other useful video links. So Marina from the Scottish Muscle Network, these again are on the MDUK website. So she’s done some really lovely YouTube videos and the links are on the MDUK website. So there’s a seated stretch class. There’s a seated resistance class lifting very small weights and using some of the stretchy bands, what we would call TheraBand. There’s stretching videos for in lying, sitting and standing. So again, it would cover kind of most people’s abilities.

And then there’s one what we would call passive stretching. So that’s when you would have a carer or a PA or a family member helping you stretch and move. So if we’ve not physically got the ability because of muscle weakness to stretch out the elbow or stretch into the shoulder, it shows you how to position yourself as a carer or a PA or family to give you that stretch and help you move the body if you’re not able to. And like we said, that’s really important to help prevent kind of pain in the joints. Try and prevent those contractures as much as we can. We want you in good sitting and lying positions. We want our patients to be comfortable.

One of my big things that I talk about with my adults is trying to make sure that their feet try and stay on the footplates as much as we can. I’ve got one of my patients laughing at me. Because if we can keep feet on footplates, it definitely helps with knees and hips just with how they kind of sit ergonomically in a chair. So if we have that ability still, we want to try and maintain that as much as possible. So again, physios will go on about seats or splinting, making sure you’ve got the right kind of adaptations in your wheelchair. All these things can be really important to try and maintain your comfort and maintain your body’s positioning, which will help them further prevent pain, prevent discomfort. Go for it. Yeah, you’re on.

Ms Anna Rutherford:T hat’s quite an important point because I do think I feel in clinic like I am just moaning and moaning and moaning. And I can feel the eyes rolling before I can hear the wheelchair coming. I just know people are going to be like..

Ms Katie Nevin: We’re a nag. I get told I’m a nag.

Ms Anna Rutherford: Yeah. But it’s that thing of there is usually a reason, and we don’t want to bore you too much by telling you the reasons in clinic.

So the position of your body is really important because if your feet aren’t on a support and your thighs aren’t on a support or your back’s not on the support, then all of the weight of your body is going through the bit that is making contact with the seat.

So if your footplates are too high and your feet aren’t supported or your back isn’t supported, then all of your weight’s going through your bottom. And when those bottom muscles get a little bit thinner, which they have for me, so they will do for all of us in this room, there is less padding, which means that the tissues are going to get affected. And it gets more uncomfortable and you’ll be in more pain.

And what we want is for you to be able to distribute your weight through all of the body, which is where, tilt and space chairs and things like that come in useful as well. And we can change your weight bearing through your back or whatever if we tilt you back. And we can look at different things to help. But just to kind of reiterate that when we’re nagging you, it’s not just because we want you to be in splints and be uncomfortable all the time. We’re trying to maintain your skeleton in a bit of a neutral position going forwards for good reason.

Ms Katie Nevin: Yeah, you probably already, we already want the best for all our patients. So we will prod and poke you and nag you, but it’s with good intentions. And then it’s up to you guys as adults now to take, if you want to take on that advice or not, and that’s absolutely your prerogative. So then if I see you six months after and you’ve not got your foot in a position, then that’s your choice as well.

Ms Anna Rutherford: And it’s just normal life. Like I don’t always want to go and do a Pilates class. I’ll sit and tell everybody in this room that you should leave here and go and do some of these video Pilates. But I may not go home and go and do a video Pilates class. So, we are all human beings and our motivation will change from not just day to day, but morning to evening.

And I know the only way I will ever exercise is if I book on something when I’ve got a grain of motivation on a Sunday night. And I think this week’s going to be different. Monday, everything changes. And so I book all my gym classes on a Sunday night. And then there’s a slight hope that I might attend one or two of them. So this is why goal setting is important.

Robert Muni-Lofra: And I would say I always think of you all not following our advice as a sign of success because you’ve got better things to do than SMA. So I’m well aware of this. And we are also well aware of the general population, the levels of physical activity and exercise are rubbish as well.

So I suppose what we want to say today is that there’s a role of exercising in helping you managing your symptoms and achieving some of your goals. And what is really, really important is that you see a purpose in exercising. And if you want to improve something and you have advice from us and we can help you achieving that, that’s a gain. If you say, well, I would like to get my knees more flexible, but I’m not going to do all the stretches because I’ve got better things to do, that is also okay. So it’s absolutely fine. But if you see a motivation, there’s ways that exercise can help you.

Ms Katie Nevin: Yeah, it’s definitely possible. But like we say, life is busy.

And then moving forward, Activity Alliance has a great website for adaptive sports. And I know there’s a sports session tomorrow. Definitely it’s getting more common. So around the country, there are wheelchair football teams. There’s wheelchair rugby teams. There’s adaptive sailing. So you’d use hoist systems to help lower you into the boat and you could have a buddy to help you, an able-bodied person to help you. Cycling. There’s lots of adaptive cyclings, especially now with the e-bikes. And again, you can have, like, dual tandem bikes. So it’s getting more momentum behind it. And I know lots of my patients have found swimming pools that they can get into now. It’s still not great, I’m not going to lie, but it’s getting slightly better. A

nd my patients have found seated Pilates classes or sitting yoga or, there’s lots of different things. So look in your local area. There are some of the UK websites and Paralympics websites and things will have information about sports and club teams if that’s what you want to get into. And then also, I don’t know how many people know, but we did put out some Pilates videos. Again, these are on YouTube. So if you type in Neuromuscular Pilates on YouTube, you should find them. But they’re also on the MDUK website. So these have got everything from the very basic positioning of Pilates, sitting, lying, standing, and then we’ve added in some extra ones where we have got the resistance bands, we’ve got assisted so you would use a carer or a family member to help move you.

So they’re again a really nice kind of base point if you are thinking what can I do? Even if you can’t do the whole video, pick out the bits that you can do. So yeah, try and stay on that positive side of picking what you are able to do. Okay, we’ll go through these and then we’ll try and have a bit of a breakout I think. So making sure you’re choosing an activity or an exercise that is right for you and your current abilities. What we’re saying as physios is it’s absolutely possible for you to do something additional from your normal activity levels. So again we said activity was your day to day tasks, getting up, getting washed, getting dressed, getting in your chairs, getting to work, but if we’re adding in that extra bit of exercise it’s that repetition of a movement towards a goal.

So whatever level we can all do more. Do it at your own pace, you know it takes time, nothing is a quick fix and exercise definitely isn’t. So you know stick with it, life does get in the way, try and do what Anna does on that Sunday night, try and be consistent if we can. Again we know it’s not easy. Set goals, it’ll help you stay on track even if you have a little bit of a blip that week or that month. If we’ve got a little bit of an end goal it will help.

Exercise can help you explore your limits, so if you do find a really nice seated exercise class at your local church hall or something and you go and you try it for the half an hour and you come home and then the next three, four days after you’re like whoa I can really feel that in my muscles, I can, oh it’s affecting my movements and things like that. Next time if you go to it just don’t be pushing it as hard, bring the level down a little bit. You’ve got to self-modify and as we know from the lack of research into exercise and SMA there is no clear you do this this many times, there is not a set in stone answer and everybody’s different. So explore your limits, be sensible, everybody knows kind of you have an idea when you’ve done too much so it’s fine to rein it in a bit but still be doing something activity.

Ms Anna Rutherford: Just on that, if you don’t know where to start, we all hate the outcome measures but what they are quite good at doing is identifying a point at which you are beginning to struggle with something. We know those elements of the room that we won’t attempt but there are a certain number of elements with all my patients that I think well let’s give it a go, let’s see if it’s any different this time and you yourselves will know that maybe there’s an activity on that where you think oh I’m dreading this, I might get it on the sixth attempt, you know that’s a really good place for you to start. Think about a task that’s difficult but that maybe you can achieve and that’s the kind of task that you can practice. My patients hate me when they’re doing that..

Ms Katie Nevin:  It’s the light, it’s the light.

Ms Anna Rutherford: And I’m like that’s your homework, you just get some of those from Amazon and stick them around your house, they’re self-adhesive and it’s about making those opportunities in your own environment, it’s difficult to access gyms, it’s difficult to get people to help you with things but if you know there are activities that we’ve tested you on that you think I’m struggling with that but I can do it, make opportunities for you to do that at home. So put those lights where you can reach them, tear up letters, tear up your bills, tear up pictures with my face on it, I always say like tear up paper, do things that you know are difficult but you can achieve or that you want to achieve, those outcome measures are quite good at inspiring exercise.

Ms Katie Nevin: And as physios we always think I want to maintain what you have at the moment and the reason why we’re on the treatment is hopefully helping us maintain what we’ve got, it’s stabilising the adult population so if we can do those repetitions or do more of them, it’s hopefully going to maintain what you’ve got with that function and again that’s a game changer if we can keep that going.

Okay, don’t push into pain, it’s not no pain no gain with our SMA population groups, if something hurts it’s a sign that your body does not want to do it so don’t push in and push through, it’s not like these bodybuilders who are lifting the really heavy weight and they might snap their bicep or don’t push it, okay.

And do plan ahead, we know that patients if they are accessing a swimming pool on Monday they could probably guarantee that Tuesday, Wednesday they’re going to feel really tired, a bit more lethargic, have less energy so they don’t plan as busy a days and then they might pick up something more at the end of the week to meet up with friends or they might work on those days. So plan ahead, we’ve got to kind of factor that in the same way with life with the rest of us, we’ve got to plan it around work and kids and our energy levels and what we can fit in so be sensible because that will help again with your motivation and it will help you stick to your goal and stick to the plan.

And have fun, we know that sport or exercise can be inclusive and sociable and release dopamine and we have that happy hormone so ideally you know if you can get out of the house or do it with others or do it with your PAs and family, it makes it more enjoyable and the more enjoyable something is the more likely we are to do it.