Maxwell McKnight: I’m Maxwell McKnight. I have SMA type 2 and I’m 19 years old. And I’m currently a business management student. I’m joined by Graeme. I’ll let Graeme introduce himself. 

 

Dr. Graeme O’Connor: Thank you, Maxwell. Yeah, you have my name is Graeme O’Connor. I’m the research lead for dietetics at Great Ormond Street. And I’ve been very lucky to have done some research in spinal muscular atrophy and type 1 in the past. And this is my third webinar now with SMA. 

 

Maxwell McKnight: Oh, wow. So, today’s podcast is on everything Stuart food and diets. We have someone who really knows what they’re doing here, so I’m going to give myself a little intro of background on my whole life of my journey on food. And yeah. So, when I was younger, I used to get really tired. And so, when I came home from school, I wouldn’t really eat. And I became like really thin and frail. And so Great Ormond Street at the time offered me salbutamol to give me a bit more energy. And at the time I was on, I think it’s called Scandishakes. 

 

Dr. Graeme O’Connor: Yes. 

 

Maxwell McKnight: Yeah. Because I needed to find a bit of weight and I wasn’t eating anything, and my nutrition was really low. So, I was put on these, I was put on salbutamol as well. And when I was put on salbutamol, I did get my appetite back and I had a lot more energy. I was feeling good about myself. But then I started putting on a bit too much weight. And I did put on quite a bit. And then I kind of needed to pull it back and I had a really hard time losing weight. And then eventually I took myself off salbutamol and it kind of coincided with my spine operation, which I had in 2017. And straight after my spinal fusion, I developed acid reflux for some unknown reason, and I didn’t really eat that much. I would get sick every time I ate and I’d kind of go maybe a day without eating and then the next day I’d have to like force myself to eat. And I had this like really hard battle with it. So, at this point I wasn’t on salbutamol at all. And it’s kind of taken up until, I’d say the last year for me to put on some weight and get to kind of a weight that I’m happy with. So, Graeme, I want to ask you on any advice on trying to maintain a healthy weight throughout someone’s life. 

 

Dr. Graeme O’Connor: Yeah, it’s really… It’s just to go back to some of the points that you’ve made there. It’s quite interesting because prior to a diagnosis of SMA, we often, they often present with very poor growth and weight gain. 

 

Maxwell McKnight: Yeah. 

 

Dr. Graeme O’Connor: And this posture in growth is due to the posture issues and swallowing problems. And so that’s our mainstay. Not even the treatment of SMA, it is trying to get their weight up and often with this growth failure that we can sometimes use a feeding tube to get the calories and the energy in. And they’ll often be on a dietician so we can control that weight gain. But people with SMA type 2 and 3, they very much don’t get that support. And the research that we see now, they do tend to get a little bit more overweight. 

 

Maxwell McKnight: Yeah. 

 

Dr. Graeme O’Connor: Because of that reduced activity. So, I’m… Throughout this presentation, I’m going to sort of share my screen on and off. So just to help with this. So, we just go… Cause sometimes it’ll be easier just to go through this. I’m going to share my screen, and I’ll stop sharing in a moment. Hopefully you can see this. 

 

Maxwell McKnight: Yeah. 

 

Dr. Graeme O’Connor: Great. I’m just going to move this box out the way that is on. So, this is the classic sort of balance of good health and the balance of weight control that everyone is aware of. And it sounds so simple, but obviously calorie intakes. So, the meals that we’re eating and the drinks and the snacks that we’re having, this needs to be equal to our normal bodily function, our daily activity and our exercise, something we call our basal metabolic rate. And if that balance is slightly out of kilter, because often if our activity level reduces, then it can just mean the weight gradually increases. It’s such a simple diagram, but it’s so complex to try to control this. And if… I mean, I’m just the next slide, actually will be interesting to see how you’ve managed to control the weight. Just going to, this sometimes takes a while to slide the first one. 

 

Maxwell McKnight: That might be… There we go. So yeah. 

 

Dr. Graeme O’Connor: So interesting. A significant portion of successful weight loss is attributed to food intake as opposed to activity which is intake cause we… Of course, activity is important, but it’s what we actually eat that will really help us control that weight. And its difficult cause when we’re not eating too much food, it means we might be missing out on certain nutrients as well. And when we are calculating energy requirements for adult population, they’ll often say, “You need 2000 calories or 70 grams of fat.” And that’s fits everybody. Whereas we know that if your wheelchair boundary you have reduced activity, then 2000 calories for a man or 1500 calories for woman is probably too much to help control that weight gain. 

 

Maxwell McKnight: Yeah. 

 

Dr. Graeme O’Connor: So, if we break down the spinal muscular atrophy in terms of the non-sitters, the sitters and the walker, which is often how they’re classified, we can actually calculate any requirements quite relatively accurately. And these are predictive equations, and something called the Schofield equation that we use. And this measures, your basal metabolic rate, and this is just the number of calories that you and I will burn just to do our basic life state sustaining function. So, looking at breathing, our thermoregulation and then metabolic homeostasis. This is capable of our biochemistry control. So, this is the minimum amount of energy that we need in the day. 

 

Dr. Graeme O’Connor:  Now, if you are doing a little bit more activity that you are sitting and you’re moving around, then we can add an activity factor onto that basal metabolic rate. And similarly for walkers, we can add a bit more of that activity factor on. So just going back to that, one of the largest nutritional concerns now for walkers with SMA type 2 and 3 is the risk of obesity, which we never used to see. So, it’s a very new sort of phenomena that we’re picking up. And this is all related to the improvement in medication now and treatment for SMA. But the problem with obesity is these, obesity comes with some of its friends and the friends aren’t particularly good for us. So, these are your high blood cholesterol, your high blood pressure and diabetes as well, which can all cause lots of problems. It’s interesting cause you mentioned that you were on salbutamol and the medical team thought his will be helpful for you to increase your activity level just keeping your energy level and they’re absolutely right. But the reason why it increases your activity level is because of the prednisolone or the steroids that are within that salbutamol, which is often prescribed to help with your respiratory function. You know, for asthmatics they will be on this. 

 

Maxwell McKnight: Yeah. 

 

Dr. Graeme O’Connor:  It’s obviously worked for you in terms of activity level, but it would also increase your appetite because we know steroids would increase your appetite as well. And we were talking before, Maxwell and you said that you actually weaned yourself off this salbutamol. 

 

Maxwell McKnight: Yes, I did. Because yeah, I was just gaining way too much weight. And obviously as a child I didn’t really see that, but my parents were like, yeah, we need to get you on a diet. But then I kind of just naturally took myself off a bit. I got to a point where I was too large. Yeah. 

 

Dr. Graeme O’Connor: Oh, well done for coming off. I mean obviously if somebody is on salbutamol that’s what’s they say is for their respiratory function that it’s really important to stay on that and any signs of asthma as well. It is important to keep those two pumps. 

 

Maxwell McKnight: But I’m really interested in that you said that kind of like obviously 2000 calories might be quite a lot for me who’s just like sitting here. And if I’m not doing a lot of moving as well. So, would you say there’s an amount to aim for as someone who’s sitting with SMA or? 

 

Dr. Graeme O’Connor: So, I would use this calculation just go back, so it’s called the Schofield equation. So, everybody is into it. You can down, you can actually, all you need is your weight in kilograms, and you can calculate your basal metabolic rate. It’s quite… 

 

Maxwell McKnight: So, you can calculate this online then? 

 

Dr. Graeme O’Connor: Yeah, yeah. As long as you’ve got an accurate weight in terms of your kilograms. And then this will give you an idea of what your minimum level, the minimum that you need each day just to maintain your weight. Now there’s a few little caveats to this. So, if you are, if somebody who is overweight, or they’ve got a very high muscle mass, then this can also change the way that basal metabolic rate works. So, there’s a few caveats, but we’d use this as a predictive formula. Yep. So, if you’ve got your weight, you can plug it into the Schofield equation to give you a marker. But then you need to add on these activity factors. So, if you are moving around like you are at university max or so on, you’re going to be in and out of classes. 

 

Maxwell McKnight: Yeah. 

 

Dr. Graeme O’Connor: Moving around so you could add what we have, the activity factors range from like 1.1 up to 3. If you have a very manual job and you want to increase quite a large amount of activity. 

 

Maxwell McKnight: Yeah. 

 

Dr. Graeme O’Connor: So, we can play around with that. But that’s how I would state it, that would be probably the most effective way to look at your energy requirements as opposed to the government guidelines, which are, you know, 2000 calories for an adult and that’s assuming that that person is mobile. But that’s a good question just to flag up. But you know, when you’re thinking about access to a dietician, they can calculate this for you as well or just do it online. You can look at your energy requirements, but just with other medication as well. Because we, and then a lot of young people with SMA will be on Spinraza or Risdiplam. And there’s not a huge amount of research out there actually. It’s a relatively new area. But individually, even with these types of medication, it has been shown to increase the body mass index. Particularly in young people with SMA 2 and in the pediatric population. And this is from the ages three to 12, they’re noticing a slight increase. 

 

Maxwell McKnight: I would say for me on this drug that I find it easier to eat, because it’s given me a little bit more energy. 

 

Dr. Graeme O’Connor: Yeah. 

 

Maxwell McKnight: And so, I find that it’s basically just helping me to eat. So, I would naturally eat a little bit more because I don’t tire as much. 

 

Dr. Graeme O’Connor: Do you know, that leads nicely onto to the second paragraph here to show the mechanisms as to why we might be increasing the appetite and it is to do with these anterior horn cells, which within your paraventricular thalamus, which control your appetite, and we are seeing this treatment potentially impacting this. And thereby increasing your appetite as a side effect of its effect on the spinal muscular neurons. So that’s interesting you say that. And now on the flip side of these medications, it can cause constipation and vomiting as well. And if you’re constipated, this will cause delayed gastric emptying and then goes back to the reflux that you had. And then again, if you’ve got, if you are constipated with reflux, it’s going to make you eat less, then of course vomiting. And similarly, with Zolgensma as well. So, it is a very new area looking at medication impact on diet, the way it affects your weight. So, it’s good to get your narrative on that. Thank you very much. 

 

Maxwell McKnight: Yeah. Just because I feel like also a lot of people with SMA, me included, don’t drink enough water anyway. And I found that I had quite a knock-on effect when I had acid reflux, and I would bring up the liquid and I wasn’t drinking enough anyway. And then I obviously got a little bit constipated as well, so then, I didn’t really want to eat as much and so it kind of went round in a bit of a cycle. 

 

Dr. Graeme O’Connor: Yeah. 

 

Maxwell McKnight: Yeah. 

 

Dr. Graeme O’Connor: And you’ve linked perfectly here again that the importance of fluid with constipation. We noticed number one cause of constipation is dehydration. 

 

Maxwell McKnight: Yeah. 

 

Dr. Graeme O’Connor: by getting enough fluid in a day, which actually we’re going to come on to, will help to resolve that a little bit. But again, if you are drinking lots of fluid, it needs to be the right type of fluid as well. So just some very basic weight loss advice. I’d be interested to hear what you managed to do Maxwell. But these are the office foods that we should reduce because they’re just very high, they’re very energy dense and devoid of really important micronutrients. So, these are our saturated food, saturated fats. So, you’ve got cakes, biscuits, pies, crisps, chocolates, fast foods. All the foods that we really love and enjoy eating can be the ones that have the most impact on our weight. 

 

Maxwell McKnight: Yes. 

 

Dr. Graeme O’Connor: And saturated fats. We just don’t need them in our body. We don’t use them. We eat this food for comfort. And did you manage to… How did you, how do you control your weight at the moment, Maxwell? What are the main changes because I think you’ve mentioned before that you aim for a certain number of calories a day. 

 

Maxwell McKnight: Yeah, so I aim for around like 1000 calories a day. Now this might be completely different if I put this into your equation. But I tend to go, I eat quite a lot of meat, and kind of veg as well. I do enjoy the odd take I have to admit. 

 

Dr. Graeme O’Connor: Yeah. 

 

Maxwell McKnight: But I am, I do primarily eat quite a lot of meat. Now I don’t know if this is true or not, but is it true that if it said say like 100 calories of protein, that it’s harder to break down so it’s actually less calories? 

 

Dr. Graeme O’Connor: Well, it’s good. Again, it’s a very good question ’cause if somebody says 1000 calories, what will we actually absorb and break down? ‘Cause we obviously have a lot of waste that we pass through. 

 

Maxwell McKnight: Yeah. 

 

Dr. Graeme O’Connor:  So, what the calorie content is, is really looking at the total calorie of within that food and how so calorie just means how much energy it takes to burn up a certain amount of the space within the body, which is actually one cubic centimeter. And that’s what calorie means. So, it does account for how much we actually absorb within the body, but there are particular foods that we don’t absorb, particularly when we do have a greater amount of waste from it. So, it’s a really good point you raised ’cause there’s a very complex science of actually saying if a product says it’s 1000 calories, how much do I actually absorb of that? 

 

Dr. Graeme O’Connor: And it’s so variable and each person is gonna be variable ’cause you might absorb calcium really well better than I can. So, you don’t need to eat as much calcium foods ’cause your body is so good at absorbing it. Whereas mine might not be as good. This is what we call the dietary reference nutrient intake ’cause it is, we have a range we can make sure it covers the majority of the population. But fantastic question Maxwell, and the problem is there’s no easy answer to it ’cause we can only get a guide how much calories is in food. Moving on to these sugary drinks here and fruit juice. So, you often see people drinking fruit juice and they think it’s healthy. But unfortunately… 

 

Maxwell McKnight: Of course… 

 

Dr. Graeme O’Connor: It’s sugar and you can argue that it’s fructose, which it is a part is a fruit sugar. So, it doesn’t cause such an insulin response as other sugars. But the problem is these are fruit sugars from, or the fruit juice is from concentrate. So there often is a lot of extra sugar added in there. 

 

Maxwell McKnight: I mean is it like the same as basically drinking like a full fat coke? 

 

Dr. Graeme O’Connor: Exactly. That’s what, Cola is, you’ve got 20 grams of sugar at 100 ml, which is exactly the same as Cola or any of those Cola based drinks. So, it’s, again, it can be dense, and you also got risk of dental caries with these fizzy drinks and the fruit juices ’cause of the acid that’s in them. And the phosphoric acid is particularly bad for bone health because it competes with the calcium within the body, so you actually urinate more calcium. So, if you are trying to lose weight then you definitely need to avoid these sugary drinks. And even the low energy ones. So those low-calorie drinks still have got the phosphoric acid in it. And I don’t know if you saw it today in the press, but aspartame which is a sweetener. 

 

Maxwell McKnight: I saw that. 

 

Dr. Graeme O’Connor: That’s now been added to the carcinogen list from the World Health Organization. 

 

Maxwell McKnight: Yeah. Wow. No more diet Coke. 

 

Dr. Graeme O’Connor: Oh, it’s like never ending is that, but they’ve been toying with this idea for a long time you know rethinking that one of these sweeteners could be particularly bad for us, but it seems like there’s more research coming out now. So yeah, ditch those fizzy drinks with a… 

 

Maxwell McKnight: I’m happy with this slide because I don’t really have that much of a sweet tooth. So, I’m quite happy here. 

 

Dr. Graeme O’Connor: That’s lucky. Yeah, I’ve got a terrible sweet tooth. So we’ve got the four fat dairy products here, so if you can go for the lower fat products cause because the, what’s important with the dairy products is that they do have the calcium and the vitamin D added and the phosphate, which is really important for bone health, which we’re going to come onto actually. And then reducing the red meat. So going for lean options if you can, removing the physical fat before you cook it, so you’re not tempted to eat it after it’s been cooked. And these are really important for your iron and zinc levels, which you get also from your pulses and lentils, which you want to replace meat a couple times a week. And also mixed nuts. But actually, mixed nuts are great for zinc and selenium and your iron, but they’re very high in energy but really good type of fat… 

 

Maxwell McKnight: So probably like more leaner are we going towards like chicken kind of things for meat? 

 

Dr. Graeme O’Connor: Yeah, that the chicken and the turkey. These are your lean meat options that you can do. Oh, if you want to go for tofu and corn products. Yeah, so tofu food. I mean just because they are say plant-based doesn’t necessarily mean they’re healthy. So just to make sure they’re not planting loads of extra fat into these products. But just, your standard tofu that you can put, you’ve got an air fryer, everyone’s got air fryers now or you can put them in the oven so they can go really crispy if you put lots of flavors onto them, they taste really good. Probably the biggest change there with weight loss is just producing the portion sizes and it’s hard to do but just putting less on the plate will make a huge difference. 

 

Maxwell McKnight: Yeah. 

 

Dr. Graeme O’Connor:  Maybe keeping an eye on the amount of carbohydrates. I’m going to come onto the carbohydrates actually. And also, because I know Maxwell you mentioned before that you would eat maybe up to just two meals a day just to control your weight. 

 

Maxwell McKnight: Yes. 

 

Dr. Graeme O’Connor: But there’s some interesting research about, cause intermittent fasting, is a huge industry in terms of controlling weight, but sometimes with SMA glucose controlled with the body can be a little bit more complex. I’ve got to come back onto that in a moment. So, I’ve got a slide there to see what your experience was. We’re just going to finish off these, very quickly. So, getting your food and vegetables, these are really important antioxidants. They have what we call prebiotics, they feed the good bacteria in the gut, they are high in vitamin C, which helps in absorption of iron from the foods that you’re eating. Snacking is the biggest problem with weight loss because we often forget that we’ve snacked on something. 

 

Maxwell McKnight: Yeah. 

 

Dr. Graeme O’Connor: If you’ve got 200 calories. I got a couple of biscuits, 200, 300 calories. How long do you reckon that takes to burn off? Or if you’re going to, I don’t know if you’re going to do a swim or if you want a treadmill, how long do you think it takes to burn up 200, 300 calories? 

 

Maxwell McKnight: I’m going to say a really… I’m going to say maybe like two hours. 

 

Dr. Graeme O’Connor: God, that it’s not as far, it’s about 25 minutes. 

 

Maxwell McKnight: Oh really? 

 

Dr. Graeme O’Connor: So, it’s not very long. But you’ve had a couple of moments of just pleasure from eating your biscuits. That’s about 25, 30 minutes of exercise just to balance that. So, this is why it’s going back to that main point that weight loss is really about diet, about what you’re eating as opposed to exercise. Cause exercise is a bonus. But if we can reduce those unhealthy snacks, it would just help us, help control that weight, or even to lose weight if you needed to. So, replacing the snacks with fruit, if possible, drinking plenty of water that fills you up throughout the day. So, eight cups or glasses, eight glasses a day. It’s about 1000, 1500, 2000 ml a day. And if you drink before you eat, drink after you eat just to fill you up, so you get that feeling of satiety. So, cause there’s nothing worse than eating and still feeling hungry afterwards. 

 

Maxwell McKnight: The worst feeling. 

 

Dr. Graeme O’Connor: I think I jump onto, let me just see what’s next on here. Sorry, it keeps jumping onto this. I think the next one, oh good. It is next slide. So intermittent fasting. It is, everyone is buzzing about it. It works really well. And when it’s good, well usually is it controls your glucose, control your lipid levels, and there’s lots of research that to show that it is fantastic for weight loss and just for your, what we call metabolic, biochemistry. The problem is if you do have SMA, we know that the liver doesn’t always work at an optimal level. And there’s a study here that showed that they think this is due to the low skeletal muscle mass was the best explanation as to why people with SMA type 2 had an increased risk of hypoglycemia. That’s when your blood sugar has dropped low during fasting. So, if you are going to reduce your intake and you wanted to do intermittent fasting, you just, you could feel very unwell if you do go into a hypo or your blood glucose drop. 

 

Maxwell McKnight: Drops. Yeah. 

 

Dr. Graeme O’Connor: When your blood glucose does drop, your body does kick in and you get a hormone cure called glucagon, which will jump in to push your glucose back up. But that could also make you feel very unwell. It one fact, glucagon has been released. 

 

Maxwell McKnight: Is that something to do with ketones or something? 

 

Dr. Graeme O’Connor: Exactly, ketones, it’s the same process. So brilliant Maxwell. That’s exactly what happens. It just doesn’t feel very nice. So just to be mindful, I think you’ve managed to cut down to two meals a day when you were trying to control the weight. 

 

Maxwell McKnight: Yes. 

 

Dr. Graeme O’Connor: And people would, to know your activity level is reduced. It’s the only way that you can really manage to do that, but just to be mindful of that, intermittent fasting does work for a population that have a normal functioning liver. But if there are issues with liver function and just to keep an eye out for how you might feel with a low blood sugar, which can make you feel a bit dizzy, you can feel a bit nauseous, you might get sweat on. 

 

Maxwell McKnight: So, are there any foods that I should try to eat more of if I’m only eating two meals a day? 

 

Dr. Graeme O’Connor: And this is a great point. I’m going to come onto that as well, Maxwell. Cause the problem is when we’re trying to reduce our intake and we have to cut out our food, we could be missing out on really important micronutrients. And the one that I particularly worry about is your calcium, your vitamin D, and your phosphate for bone health. 

 

Maxwell McKnight: Yes. 

 

Dr. Graeme O’Connor: Just going to… I’m just going to just check; I’ve got another couple of points here about the dieting. There’s also ketogenic diet, which you’ve mentioned before, which you just mentioned, but so ketogenic diet is very big, but it’s very different to the intermittent fast and they just cut out carbohydrates. 

 

Maxwell McKnight: Yes. 

 

Dr. Graeme O’Connor: But just to get, I think the best way forward really would be to have your regular meals impossible up to three meals a day with the snack in, but just to reduce the portion sizes. But it’s still very difficult to get all the micronutrients in. And the main area that I worry about is bone health. And the reason why it’s the problem is that when we stop growing, it means that we really stop being able to put in these really important nutrients into our bones. So, calcium and phosphate. So, you can see here on this growth chart here, by the age of 20, we have pretty much finished growing if not even before that, maybe 16, 17 sometimes. 

 

Dr. Graeme O’Connor: And so, if you haven’t met your peak bone mass at that age, then it’s just a downward trend from there. And it’s very, when we do, you can get some of those nutrients back in, but generally it’s a downward spiral. And then for females, there are at a particular risk during pregnancy they can lose, calcium losses from the bone if they’re not getting enough calcium from their diet and also during menopause they can start to lose some bone health. 

 

Maxwell McKnight: So, does this link to the vitamin D as well with bones? Because I, ever since I was young, I was always, I didn’t have enough vitamin D. So, I was put on supplements because I had really, really weak bones. 

 

Dr. Graeme O’Connor: Yes. 

 

Maxwell McKnight: And that was a problem they wanted to fix really quickly. Which I’m still on actually. 

 

Dr. Graeme O’Connor: Good vitamin D is a wonderful, micronutrient wonderful fat-soluble vitamin, so carry on with it. It’s a bit like the new super vitamin that we know about. It has so many benefits, even in terms of mental health and respiratory function. We know that when I was working on the intensive care unit during COVID, a lot of patients were coming in that were really bad, had depleted vitamin D stores. And we know that vitamin D is really important for your respiratory function, so carry on taking it. There’s an, you mentioned the reason why vitamin D is important for bone health is because it’s needed for the absorption of calcium and phosphate. So, without vitamin D we can’t actually absorb the calcium. 

 

Maxwell McKnight: Right. 

 

Dr. Graeme O’Connor: So, it’s great that you, when do you last get your vitamin D level checks since you started the supplements? 

 

Maxwell McKnight: I would say it’s done most times that I go for my Spinraza. 

 

Dr. Graeme O’Connor: Good. So, they double the… 

 

Maxwell McKnight: Yes. Yeah. 

 

Dr. Graeme O’Connor: Good. I would say definitely stay on it because even if you are eating lots of calcium, which is fantastic and you’re getting your vitamin D, and your bone health is there. The problem when you’re not weightbearing and the activity, this is one of the most important parts of again having healthy bones is having weightbearing exercise. 

 

Maxwell McKnight: Yeah. 

 

Dr. Graeme O’Connor: So, by not having that, it does increase your risk of those, brittle bones which I’ve got a slide to come onto. But you can see here, look at the calcium requirements for a young adult and an adolescent looking at about 800 to 1000 milligrams a day. And then if you look at this, what this practically means, it is a lot of calcium containing foods you need to eat a day and there are at least three or four portions of these high calcium foods. So, you’ve got your skimmed milk here. So skimmed milk is actually higher in calcium than full fat milk because when they take out all the fat, they actually put in a lower energy milk in to make it up to get the extra calcium, you actually get more calcium in your skimmed milk. And if you don’t drink dairy, you are a vegan and you’ve got the milk alternative, just make sure they do add calcium vitamin D into that oats milk or rice milk that you are using. Then fat yogurts again humped out 200 milligrams, but make sure when it is low fat, they’ve not added in loads of sugar as a compromise. 

 

Dr. Graeme O’Connor: And then the hard cheese here you’ve got lots of calcium and then broccoli and spinach, but you could see you’re going to need a good, three or four portions of these a day, if not full night lot of portions to get anywhere near those calcium requirements. That’s why a multi-vitamin is often quite useful just to help cover yourself when you’re on a weight reducing diet to make sure you get many of those micronutrients. 

 

Maxwell McKnight: Because I feel like maybe trying to get in this much calcium might be quite problematic with like calorie wise sometimes. 

 

Dr. Graeme O’Connor: Exactly. 

 

Maxwell McKnight: Yeah, yeah. 

 

Dr. Graeme O’Connor: Is that balance. And whenever you’re losing weight and you’re trying to lose weight, you got to compromise micronutrients. And that’s why multi-vitamin, anything over the counter is great and making sure you have these multi-vitamins with food when you eat, just to help with the absorption of those fat-soluble vitamins within the supplements. Cause it’s got lots of complexities within that normal bioavailability. 

 

Dr. Graeme O’Connor: So, look at vitamin D cause it’s very difficult to find in the diet. So, vitamin D deficiency has been reported throughout the world. It’s actually a huge issue across the globe. As we’ve mentioned it’s really important for your calcium and phosphate absorption and it’s probably the more important in calcium supplementation terms of improving your bone mineral density. So, we need about 600 international units a day or about 10 micrograms a day. The problem is the main source of vitamin D is from sunlight. So, we need about 20 to 30 minutes of sunlight a day to get this vitamin D level really good for our winter stores. Cause it is a fat-soluble vitamin which means we can get about three-to-four-month storage of it in our liver. 

 

Maxwell McKnight: Really? 

 

Dr. Graeme O’Connor: Yeah. So, it’s good. It does sit around, and we can use it for a while. The issue is if you have sunscreen, cause of course skin cancer is a big problem and we worry about skin cancer but if you have sunscreen, it blocks the vitamin D conversion in the skin cause the vitamin D is converted within the skin, then it converts in the kidneys and then the liver. 

 

Maxwell McKnight: Oh wow. 

 

Dr. Graeme O’Connor: So, it’s a bit of a balancing act, when you get outside you get a bit of sunshine. 

 

Maxwell McKnight: But try not to get burnt. 

 

Dr. Graeme O’Connor: Not to get burned and then you put on your sun cream afterwards, so you get that vitamin D dose. 

 

Maxwell McKnight: So, it is good to get your dose before the winter hits, get enough of it because it is stored for the winter. 

 

Dr. Graeme O’Connor: Yes, absolutely. And the northern hemisphere is much more difficult and again depending on your skin color, so if you’ve got darker skin, you’ve got much more melanin in the skin, so you need to be in the sun even longer to get that vitamin D. 

 

Maxwell McKnight: Oh right. 

 

Dr. Graeme O’Connor: Notion. 

 

Maxwell McKnight: Yeah. 

 

Dr. Graeme O’Connor: Does depend on where someone is very fair skin, they won’t need as much time cause of the melanin there was. 

 

Maxwell McKnight: Yeah. 

 

Dr. Graeme O’Connor: So, this is why again, vitamin D supplementation, if you’re taking a vitamin D supplement, it’s one of the best supplements to take and I would highly recommend it for anybody because everyone seems to be low in vitamin D at the moment. And there are some foods are fortified with it so they added it so you got your oily fish will actually have it naturally and then eggs will have it. But you’ll notice in the shops they will add vitamin D to eggs even to breads just to help with that intake, this was just an interesting study again that was looking at wheelchair bound individuals. 

 

Dr. Graeme O’Connor: It was a small study of 75 patients who had inadequate intake or vitamin D at their initial consultation and their vitamin D and calcium intakes correlated positively with their bone mineral density. So, there was that link there we were talking about. And again, by just taking that vitamin D intake over a few months, they did notice an improvement in the bone mineral density. So, you are doing the best thing Maxwell by taking that vitamin D supplement at the moment for your bone health. And it’s a nice study, the assistance for wheelchair bound. And this is going back to the importance of exercise. So, I’ve got a couple of slides here, but it’d be good to hear what you do Maxwell in terms of activities and what you could recommend for people within a chair. 

 

Maxwell McKnight: Yeah. So, when I was younger and I could wait there, I would get out in my standing frame as much as possible. I would stand probably twice a day when I was younger, and I used to do all of my tasks while I was standing because it was good to balance as well for my core body. But now I tend to focus on upper body, so I do a lot of hand bike, try and get my heart pumping. I do a lot of thorough band resistance training. And I also try and get out in the pool as much as possible as well because that’s kind of just like all of my muscles, and I get really tired after that as well. So, I know that I’m wearing myself out. Yeah. 

 

Dr. Graeme O’Connor: That sounds great. And again, the research has shown that by doing this, but if you can get a weight in your arm and that again helps with the bone density. You’re doing everything right there by just getting there as much activity. 

 

Maxwell McKnight: And there are quite light weights that you can get offline as well because I obviously know it’s quite hard to go to the gym cause the weights will be like 10 kilograms minimum, but you can get quite smaller weights online. I have a little dumbbell which is 500 grams, which I like to pressure around and extend my arms out as much as I can. 

 

Dr. Graeme O’Connor: That’s brilliant. And you just reminded me during Covid there’s a lot of people panicking about not going to the gym and unfortunately there was a, as know and any of these situations, there’s always these scammers that are out there. So just be careful when you do book, if you do buy some stuff from the internet that it is reputable because lots of people were trying to buy weights on the internet during the pandemic and the money went, the money disappeared, and nothing arrived. 

 

Maxwell McKnight: Really? 

 

Dr. Graeme O’Connor: It’s terrible. Isn’t it? 

 

Maxwell McKnight: Wow. 

 

Dr. Graeme O’Connor: Any scheme. This is just some points before we’ve got some more bits to discuss about practicalities that we go through and also some of the social side stuff. But just here to think about multi-vitamin and we’ve discussed about vegan and plant-based lifestyles, and they just always mean it’s more healthy cause they might add in more fat in there. And try not to have unhealthy foods in the house because it doesn’t matter whatever your intentions are. And when you are on a weight loss diet, it needs to be for a month or two and then you can relax once you’ve got down to a happy weight. But during that time, you need the family support because if, doesn’t take much, you think, oh God, it’d really fun to eat a chocolate or some crisps and if it’s in the house, it’s just going to be… 

 

Maxwell McKnight: It’s easy to get. It’s so much more effort to go to the shop and buy it. 

 

Dr. Graeme O’Connor: Exactly. 

 

Maxwell McKnight: Then yeah. So would you say I have a question about fish actually. Is fish quite a good thing to eat because of the nutrients in it and I know it’s not that calorific either. 

 

Dr. Graeme O’Connor: And the types of fat that’s in fish, what we call polyunsaturated are good for us as well. You can get your white fish like your cod and your haddock, which are low energy and great protein source. But if you want to go for your salmon or your tuna, they’ve got good amounts of fat them as well. And I would definitely say as an alternative to meat to reduce your red meat and to replace it with the oily fish even like mackerels. Again, there’s still the energy in the calories in these and what you do buy these fish, if you do buy the tins, make sure you buy in the brine or spring water as opposed to the oil. Cause it might, even though olive oil is great, it’s still a lot of calories that you’re going to have to burn up. Buying the spring water, that’s a great idea there. 

 

Dr. Graeme O’Connor: And if you do know there’s some difficult times in the day or before you go to bed that you find you’re hungry, there’s some good research again that show that you do an activity that’s got hand and eye coordination like knitting, crochet, jigsaw puzzles. Choose again these are suspected to be good to take your mind of it. Cause we know that cravings pass within about two minutes, so you get craving of food. It will go in about two minutes time but watching TV doesn’t make any difference. That keeps your craving there. But by just doing something quite active can help reduce that, keeping a food diary as well this can be quite helpful. You could keep an eye on what you… cause sometimes we forget how much we might be stacking on. And by keeping an honest food diary we can look through and think okay, this is what needs to cut out on a little bit here. 

 

Maxwell McKnight: I would agree. I think in our house we’ve tried to reduce the number of snacks that we have and before you’d eat a packet of crisps and you wouldn’t even realize, like you would generally forget that you… 

 

Dr. Graeme O’Connor: Finally, we all… 

 

Maxwell McKnight: That morning. 

 

Dr. Graeme O’Connor: Yeah. And also, there’s chocolate around you grab a few bits absolutely. There were a few questions you had about practicalities as well, but the ideas that you come up were brilliant. 

 

Maxwell McKnight: I feel like there’s quite a lot we can be doing even though if we’re sitting in a chair, there’s a lot that we can be moving around still and there’s a lot of exercises that we can be doing. And I have quite a lot of videos on my Instagram about the different routines that I do. 

 

Dr. Graeme O’Connor: Oh, fantastic. Could you share that with me? Well maybe on the link somewhere Maxwell so, when people will log into this, they can… 

 

Maxwell McKnight: Yeah definitely. 

 

Dr. Graeme O’Connor: Log go onto your… If you’ve got that’d be fantastic. Sorry to interrupt. Go on. 

 

Maxwell McKnight: No cause it obviously it’s about weights as well, but anything really around the house, like balls or I might get a can of tomatoes and push it along the table. Any of these movements are great and obviously they’re great from a, trying to keep the weight down point of view, but also with SMA you’ve got to keep your muscles moving to maintain them as well. So, anything. 

 

Dr. Graeme O’Connor: That sounds quite lovely. You’ve got an Instagram account that can help for that. That’d be a brilliant link if you didn’t mind people going into that. And there were some good points that were brought up before about if we had any advice around the practical side of things that might help people with that have quiet, if their SMA is quite advanced. And especially as occupational therapists and physios work well in this area and they can do it’s, they can change the table heights. Were these your suggestions actually, Maxwell? What about changing the table heights? Arranging for power chairs to ensure the best in services. 

 

Maxwell McKnight: They weren’t my suggestions, but I can probably say quite a lot on this because I think the position that you eat does matter quite a lot and straight after my spinal operation, because all of my position and posture moved around, I felt that I was weaker when I was eating. It was also a longer way to my mouth as well because my torso was suddenly a lot straighter. So, I would tilt the back of my chair backwards a bit and it’d bring my armrest up so I could kind of balance my elbows or my armrest to get to my mouth a lot easier. I think having a table higher up or putting your chair lower down if your chair does go down also helps a lot because it just reduces the range of movement that you need to take the fork or the spoon to your mouth if you’re struggling to feed yourself. Yeah. 

 

Dr. Graeme O’Connor: Brilliant. That makes… It’s really helpful. Fantastic. And there was a bit more information here about, not drinks never, what drinks we should have, which I don’t think I really mentioned cause we’re saying drinks are important but not to drink fruit juices. 

 

Maxwell McKnight: Yeah. 

 

Dr. Graeme O’Connor: The food, drinks that come up really well, and the low fat milk alternatives or the low fat milks are fantastic and diluted squash, but water is also fine that if you drink water it’s better to have it after a meal because of the… Absolutely, if you drink water on an empty stomach it actually drains out a lot of nutrients and electrolytes from the body. So, this is why often when it is someone that is unwell, they come into hospital, we put them on a saline that’s got either glucose within it or some electrolytes to help with the absorption of that. So, to have water on its own it’s quiet, can be not so useful, especially after an exercise water can reduce the number of fluids that’s actually absorbed. 

 

Maxwell McKnight: So would you say there’s like a drink that’s like the right balance, which is hydrating and… 

 

Dr. Graeme O’Connor: These milk alternatives… 

 

Maxwell McKnight: Yeah. 

 

Dr. Graeme O’Connor: Like skimmed milk is also in a lot of the literature to show as a really healthy hydration liquid, especially during exercise, or you’re doing a lot of activity as well. 

 

Maxwell McKnight: Yeah. 

 

Dr. Graeme O’Connor: It’s supposed be helpful, but water again is absolutely fine maybe if you are eating. And I’ve got here as well about the low-calorie fizzy drinks because of the phosphoric acid competes with calcium, which we touched on already. 

 

Maxwell McKnight: Yeah. 

 

Dr. Graeme O’Connor: Did you want to go onto the social side, which was a really interesting area. 

 

Maxwell McKnight: Yeah, well I think it all came around I’d say after my spinal operation, and I just didn’t get along with eating that much because I was weaker, and I found that I was quite embarrassed to actually like eat in public because I found it a lot harder. And I know some people with wire system may have their carers feed them or they’re fed by a tube, but for me going to be able to feed myself to suddenly really struggling took quite like an effect on me. And that’s also when I started losing quite a lot of this weight as well because at school I wouldn’t want to eat around other people, and so, yeah, no, I just lost so much and I think for me, getting out of that really, it was really hard but I just had to put myself in those situations more. 

 

Dr. Graeme O’Connor: Yeah. 

 

Maxwell McKnight: Because you have to get used to it. It’s something that’s not going to go away and I just had to push myself to be in those situations where I did have to eat in front of people and just really gain my confidence. So yeah, I’d say definitely to anybody who’s listening, like if you are embarrassed to eat in front of anybody else, then you’re not alone. I feel like I quite a lot of people go through it as well. 

 

Dr. Graeme O’Connor: Yeah. 

 

Maxwell McKnight: Yeah. 

 

Dr. Graeme O’Connor: Do you know, I remember I was reading this and it’s… Thank you so much for sharing this, Maxwell, because you just shed light to it, it’s an incredibly emotive situation but it affects so many people as well as in this situation. I’ve worked in for 20 years. I’ve written clinical guidelines, for dieticians on anorexia nervosa. 

 

Maxwell McKnight: Yeah. 

 

Dr. Graeme O’Connor: And it’s getting to this point where it’s just being mindful of these types of eating behaviors that might be creeping in. So, when people try something lose weight, we can always take it to the excessive stage and low self-esteem can be one of these many precursors that goes into causing these disordered eating. 

 

Maxwell McKnight: Yeah. 

 

Dr. Graeme O’Connor: And it’s just keeping an eye out for it, sort of making sure that you’re not getting too obsessive with the exercise or counting the calories and even just talking to family members about it, just by name it saying, oh actually I’m a bit worried that I might be exercising too much or I’m getting way too focused on the calories or I’m worried about my body shape, it’s just been mindful of it and it’s so really helpful that you’ve raised it cause it is incredible motive. But just making sure you’ve got family and friends around to say that you might be struggling a little bit and if it is getting out control, taking it to the health professionals to say, look, this has gone too far now I can’t get back onto it, but thank you so much for actually… 

 

Maxwell McKnight: I completely agree though, I think it was my partner who first said, you know Maxwell, so I think you might be counting calories a little bit too much. You might, I see that you lack confidence when you’re eating around other people. And I was like, yeah, I do. And they kind of I have to, you have to realize yourself as well, I think. 

 

Dr. Graeme O’Connor: Yeah. 

 

Maxwell McKnight: Yeah. 

 

Dr. Graeme O’Connor: And it makes… And it is such a fine balance cause when we try to lose weight, of course we’ve got to be much more mindful about what we’re eating, what we are doing. But it’s whether it goes to that next level that’s taking over and you’re just getting obsessed with it and it’s that some people are absolutely fine with diet, and they just get back on the wagon and start eating, it’s fine. But some people take things very literally and just get stuck with it. And just by mentioning this in this webinar is so important Maxwell. So, thank you so much for being honest in the first place was saying you experienced this because you won’t be the only person and just the fact that someone can hear this as well, and I know that they question if it’s gone too far or not is brilliant. 

 

Maxwell McKnight: Definitely. Yes. I have a question for you actually. So, I think a lot of people especially when they get older thus, they may really struggle to lose weight. And I was having a conversation with my friend, and we basically take two different kinds of ideas to it, and he eats really smally, but often, and I eat less meals, but they’re bigger and so, scientifically, what is the best way? I know everything works for different people, but yeah, just scientifically, what’s the best way. 

 

Dr. Graeme O’Connor: Do you know what? 10 years ago, they would have said small and often is really important. And I think that is and again, with SMA in terms of the metabolism, it might be better to do small amounts. But then if you look at all the research, the intermittent fasting and the benefits that has on the metabolic syndrome in terms of your glucose and your lipids, I think one size does not fit all. And it definitely doesn’t work. If you find having two meals a day is better for you than having a constant small meal, then I would definitely work with that. And I’ve never said that anybody would do one way or the other. One size doesn’t fit all at all. And then there’s pros and cons for both. So, if it works for you, Maxwell, stick with that. And if your friend, small and regular meals, perfect and snacks in between that, that’s just as good. And just keep an eye on those hyperglycemic events. If someone has got, if they have more advanced SMA, the small regular meals might work really well in terms of the glucose control. But for yourself, you think twice, I mean, I prefer to do that as well. I love intermittent fasting; it works really well. But, you know, it speaks to the room. 

 

Maxwell McKnight: Yeah, no, definitely. I think it was really nice that you also touched on the calcium and things like that, because I feel like also people with SMA struggle chewing and eating on certain foods as well. And so, I think you said to try and cut out red meat, which was nice, but also people with SMA struggle to eat that kind of food anyway, especially like your steak or something like that, it can be really hard to eat. So, I think like tofu and things like that are quite naturally a lot softer. 

 

Dr. Graeme O’Connor: So, yeah, you’re right. And these are like the mincemeat, you get minced turkey as well, which might be easier to eat, but I would definitely eat, going for the plant-based foods. That protein source is potentially better for the body anyway than having an animal source. And just what’s nice about a plant-based diet is that you can still have meat, but just have it a couple of times a week or it’s not the mainstay of the diet. But the tofu and the corn are definitely more manageable in terms of the abilities of like that are… The softer foods. 

 

Maxwell McKnight: Yeah, that’s perfect. Well, I think I’ve touched on everything that I have to ask you. 

 

Dr. Graeme O’Connor: Yes, it’s been a joy. Maxwell, you are a fantastic advocate for the SMA. It’s been such a joy to meet you. So, thank you so much for… Well, actually, I think they reached out because of your lovely email. 

 

Maxwell McKnight: Yeah, on my video online as well cause I… 

 

Dr. Graeme O’Connor: Oh, that’s where it came from. 

 

0:48:11.5 Maxwell McKnight: Yeah, no, because they saw that I was doing some exercise videos, and I also talked about my insecurities as well on eating food as well. So, it came from that as well. 

 

Dr. Graeme O’Connor: Well, done for being so open cause it’s hard and I don’t think people understand, but there’ll be other people in this situation that you’ve helped them think, oh, good, it’s not just me. So great job. Well done. 

 

Maxwell McKnight: Thank you so much. Well, I think we’ll wrap it up there then. Thank you so much for coming. 

 

Dr. Graeme O’Connor: Great pleasure to meet you, Maxwell. 

 

Maxwell McKnight: I’ve learned so much as well. 

 

Dr. Graeme O’Connor: Good. 

 

Maxwell McKnight: Which has been amazing. And it’s just nice to hear like about the salbutamol as well. I wasn’t really told about that, that it would increase my appetite that much. So, yeah, it’s nice to hear that from you. 

 

Dr. Graeme O’Connor: Yeah, it wasn’t you. It’s the drugs, it’s always the drugs. 

 

Maxwell McKnight: Definitely. So, thank you. And if you want to reach out to SMA UK, you can on the website and get in contact with them with email if you have any other questions. Thank you for watching.