Diabetes Talks - Stories that matter

[Music] welcome to this first in our series of deep talks my name is Mike Ruiz I'm the head of corporate affairs in the one or risk in that capacity I have a very diverse responsibility it's from communication Environmental Affairs government relations corporate sustainability but the one thing I'm most proud about is actually our patient relations team who was organized this event our patient relations team is responsible for driving all our interactions with the patient community and they are doing a fabulous work in that regard and I have to say no one orders Cass had deep ties to the patient community from almost hundred years we've been working in diabetes since 1923 and obviously we have had many interactions with patients over close to hundred years but it is only in the last three four years we have made that interaction more systemic it used to be very ad hoc but we created the pending patient relations team to have a more systematic dialogue with the patient community for two reasons because we think we can learn a lot from that interactions and hopefully also the patient community can learn something from us and definitely by working together we can achieve much more than the sum of our parts now one of the first things that the patient relations team did was to create the deep Network the disease experience expert panels patients in different disease areas who could share with us their experiences and their challenges of living with a serious chronic disease and that has been a huge success over the three years now it has been been running we just had the big deep summit in Copenhagen less than a month ago and now we're introducing for the first time the deep talks deep talks where a number of patients with a chronic disease today it's about diabetes and it's about the challenges are so d associated with a mealtime we'll share their experiences of some of those challenges and how to cope with them and thereby hopefully and I'm pretty sure they will also inspire other people in the same situation to how to cope with that situation and I have to say that having worked in this company for 34 years I have met many people with both type 1 and type 2 diabetes over the years and I think I'm very firm when I say I know more about the challenges of diabetes than the average person on the street because of those interactions but when I saw them the headlines for today's presentations there I also came to realize how little I know one of the questions which will be addressed by the way I don't know by who of you is about if you suddenly go vegan I always wanted you know everybody can count the carbs and how that may be different from your previous diet but it's something strange happening to your metabolism that you need to it's a special challenge or when you travel to new countries and don't know how to do the car cont because it's a different diet and so on how do you how do you deal with that or the first time your child wants to do was sleep over someplace how do you how do you deal with those things so although I think I know a lot I know very little and I know some of you at least met Jakob Steve Peterson this morning out at Molly the stem-cell research I know him very well he's also been with this company for an eternity and he too and to think about it he's been researching diabetes for so many years and it's only 2 years ago when his childhood diabetes he said he really came to know what it was all about and that we hope and we are sure that through the the online the transmission of this and later on on demand that many people will benefit from the talks we are having here today now the master of ceremonies of the master of the vent here is you Renza kabylia who would come all the way from the summer of melbourne to the cold north to be with us here and and and take us through the evening you have had diabetes yourself for 20 years and you are a very prominent member of the diabetes online community and and I know you say that you know you will do make every effort to make sure were that the voice of the diabetes patient is heard loud and clear so why don't you help us do exactly that thank you welcome thank you so much I have come from Melbourne it was over 30 degrees when I left there on I think it was Saturday when I left and it hopefully will be warm when I get there home on Wednesday but I am so thrilled to be here even with the cooler weather and I am absolutely thrilled to be here for the first deep talk and I can tell you that there are eight incredible topics nine amazing speakers and that you're going to hear from in the next couple of hours and talking about one of those issues that when it comes to diabetes is so contentious it is so interesting it's fascinating it's frustrating and it's also probably one of my favorite topics and that's around food and mealtimes now if you get online and you search diabetes and food you will find there are hundreds and thousands of ideas there are guidelines there are recommendations the guidelines keep changing as well and as a person living with diabetes we need to wade through all of that and find what works for us and that's what we're going to hear today from our from our speakers now what I would like to say is as I do live a lot of my life online there will be a lot of live tweeting and we would really encourage people who actually are on social media here today to please share so that as many people as possible can hear and rendom and learn about what's being spoken about today they haven't got a chance to watch the live stream that's happening now and the hashtag is deep talk please do use it if you see those of us in these front rows without heads and a phone when not being disengaged we are actually sharing with the online community so that's probably enough for me I am going to introduce our first speaker now so Felicity Rose is a PhD she's a Fulbright Scholar she's a wife and mother and an expat she's originally from South Florida but she now lives in the UAE where she teaches literature and she was diagnosed with type 2 diabetes in 2011 and has a combine and has combined her loves of literature writing and educating to become an incredibly strong advocate and a strong voice in the diabetes community she started out by blogging about her experiences that diagnose not to feed it which is such a brilliant name for a vlog and eventually created the website black diabetic info to provide culturally competent information for the African American community and her topic today and I can tell you I've heard her speech and I've heard Felisa speak before she is a brilliant speaker and she's kicking us off with the beautifully alliterative family feasting and fortitude navigating the holidays with diabetes please join me in welcoming Felicia thank you [Music] so hello everyone welcome to my holiday feast see there's a table right here on this table you will find candied yams cornbread dressing baked macaroni and cheese oven roasted turkey and my grandmother's green beans for New Year's you'd find on this table hoppin John which is rice and peas and of course for good luck to bring in the New Year you have to eat it with the side of collard greens on this end of the table you will find a jelly coconut cake decorated to please the eye and next to it you'd find sweet potato pie these are the flavors of my holiday feast these are the foods that I grew up eating during the holidays and loving but I remember when I was diagnosed with type 2 diabetes I didn't know how I was going to navigate that table of course reading pamphlets on carb counting and the glycemic index and the wonderful plate method I had figured it all out that first holiday potluck I stood in line as the women began to serve food would you like some macaroni and cheese no thank you would you like some cornbread dressing no thank you see I was gonna do a modified plate method because what I really wanted to eat that holiday dinner was banana pudding and banana pudding is full of carbs so I was gonna fix my plate and it was gonna be perfect because it was gonna have non starchy green vegetables and oven roasted turkey so zero carbs leaving just enough for that banana pudding so when I got in front of the woman who was giving now potato salad she asked would you like potato salad I said no thank you to that she replied bye taking my plate dipping her spoon in the potato salad and putting it on there I couldn't believe it I was shocked I thought maybe she didn't hear me so as a newly diagnosed person I proceeded to explain excuse me I'm newly diagnosed with type 2 diabetes and I'm doing the carb counting and platon method so I really can't have any of that potato salad because I'm saving all of my carbs for the banana pudding at the end of the table so really I can't have any potato salad well to this the woman replied by still holding my plate taking her spoon and dipping it even further in the potato salad and plopping more on my plate handing it to me and saying I made it I remember walking away with a plate full of potato salad that I was not going to eat and of course my lovely banana pudding realizing that when you're newly diagnosed and you're reading information about how to eat with diabetes what they don't tell you is how to navigate the holidays they should come with a warning symbol that says during the holidays at your own risk try it because it didn't work out but what I realized was that she and I had seen that plate from two different angles see what I saw in that plate was all the carbs and what she saw on that plate was all of her love so during the holidays the foods are made with two main ingredients carbs and love and I didn't want to offend anybody so I had to figure out how I was going to navigate this so here are four things that I've learned how to navigate the holidays the first thing is I bring my own caught on my own vegetables to potlucks during the holiday spirit no one brings vegetables everyone is in the festive spirit they're letting their belt loose they figure they can exercise in the new year they're gonna go out with a bang so I rarely find vegetables at holiday dinner so that's me I'm bringing typically my grim there's green beans or I eat before I arrived it I stack up on green vegetables this actually helps so I'm not ravenous by the time I get there the second thing is I had to learn how to navigate food pushers you know people who love to push food on you it's your grandmother saying you're looking a little sin go and have a second helping it's your best friend who's saying wait a minute you have to live a little right go ahead and have more so food pushers I would say is one of the biggest challenges that I have to deal with and I've learned over seven years that food pushers have their own language and they don't understand carb counting they don't understand I have diabetes and I can't eat more right now but you know what food pushers do understand they understand an upset stomach and the midnight munchies so here I go food pusher - Lissa would you like some pumpkin pie and eggnog to go with that plate the new mean oh I would love to but I have a little upset stomach food pushers the response oh oh don't worry about it then I completely understand having an upset stomach don't worry next the midnight munchies here we go again hey felissa would you like to have some pumpkin pie and eggnog with that plate you're having oh that would be so good I would love it but I can't eat it right now but I'd love to take it to go for when those midnight munchies hit me food pusher oh that's right girl I completely understand yes I will wrap it up for you to go so this is how I get my second helping people don't understand diabetes when you tell them but they do understand an upset stomach and the midnight munchies the third thing is that I like to work out in the evening if you follow me you know I've lost almost a hundred pounds and so I person that enjoys working out like what it does like how I feel but because I like to work out in the afternoon typically these pot Luck's and dinners and celebrations they happen in the evening so during the holiday season I flip it I exercise in the morning and if I cannot get to the gym if I'm at the holiday party and some of my deep speakers will know this for sure I'm the kind of person that'll say to a crowd after dessert okay let's crank this party up I wanna dance with somebody I wanna feel the peace with somebody yeah I wanna dance with somebody you have to burn carbs any way that you can so if you are at a party you dance dance dance so this is a third thing I've learned to do to navigate through the holidays lastly the fourth thing living with diabetes is a 24-hour job there's a strong correlation between diabetes and depression and depression and the holidays so during the holidays it is extra-special for me to make sure that I pour into myself positivity that I remind myself that I'm doing a wonderful job I reflect on my motto diagnosed not to feed it because when you're managing diabetes let's face it you're really doing the job of a superhero I mean taking over what a vital organ should be doing so even on my worst day I'm still good and so I have to remind myself of that because when I do succumb to a food pusher or I don't exercise at the gym I can begin to feel feelings of failure or after a great party and I check my blood sugar my fasting blood sugar in the morning and it's really high I can also feel like a failure but I have to combat those feelings and I have to remind myself that I'm doing a great job so how I navigate the holidays pass that along to you to sum it up for things the first bring your own vegetables to the potluck and yes you won't get the cool card but at least your blood sugar will be okay too if you don't feel like explaining diabetes to anybody use the language of food pushers an upset stomach and the midnight munchies thirdly exercise dance dance like you're bringing in the new year and lastly pour into yourself positivity because if you are managing diabetes you are doing a great job and remember you are diagnosed but you are not defeated thank you Wow really could they have been a better way to keep that off thank you so much felicitous it's amazing and now I'd like to um welcome Antje teal to the stage and she lives in a small town close to Hamburg in North Germany and she is 48 years old and works as a freelance medical journalist which she was doing before she was diagnosed with diabetes when that happened actually pretty late she was actually 40 years old so she's been living with diabetes for eight years and now she is blogging about her life with diabetes and she's been doing that for about four years and I love this topic because I think many of us will have probably screamed this at some times it wasn't the carbs please join me in what we enter to this Tuesday thank you hello everybody when I was diagnosed with type 1 diabetes almost nine years ago I was lucky in many respects being a medical journalist I already had some basic knowledge of diabetes I I knew what the glucose levels of healthy persons look like I knew the difference between type 1 and type 2 and I'd seen a lot of pictures of diabetic foot ulcers and I knew it's important to keep glucose levels in range and avoid complications the essence of my diabetes training didn't sound all that hard we'll find out how many units of insulin will lower your BG by 40 points and then you just count the carbs those your insulin sounded like something I can do what helped even more was having a very empathetic and loving man by my side when I first told Christopher that I was diagnosed with type 1 diabetes he simply said we can do this honey and I was relieved that he was willing to accompany and support me but I didn't know just how enthusiastic Christopher would become about this support I probably should tell you that Christopher is an electric engineer and spends his working hours with measurement and control technology that means he's very interested in control circuits of any kind now diabetes management means taking care of a very vital control circuit and once Christopher realized that he was in it for sure he not only wanted to understand the process he wanted to find a way to automate it for me I don't know how many evenings we spent talking about his idea of an individual diabetes simulator sort of my virtual alter ego with an algorithm inside and whatever I'm up to I just have to feed it the relevant data and it will tell me what to do next I know that sounds a bit naive and you can probably tell that my story that at the beginning of my diabetes career I didn't know all that many people with diabetes especially not the ones that used closed-loop systems and already have put a lot of thought into these things we didn't know any of this we were about to start from scratch and then we began to understand how tricky the control loop of diabetes can be it didn't take me long to find out that things can go wrong even if I measure my blood sugar correctly estimate the carbs and insulin calculate my bolus right because I have to keep in mind that I cannot release insulin directly into my blood like a healthy pancreas when I take my pen and inject insulin into the subcutaneous fat of my belly it takes some time until the insulin reaches the bloodstream and begins to transport glucose into the cells so it's not always the carbs sometimes it's the time insulin needs for action what does that mean for a diabetes simulator Chris have said we'll have to take into account carbs and some kind of delay I added don't forget exercise because I also found out that going to the gym can lower my BG just as effectively as two or three units of insulin Krista said okay carbs delay and exercise but every year of living with diabetes I discovered more factors that influenced my glucose levels for instance I noticed that around the time of year when we switched from summer time to Standard Time my insulin sensitivity would change I usually need more insulin and winter and less in the summer maybe it's the lack of light that has to do with it I don't know I still haven't found any scientific evidence on this but if there's a connection between exposure to sunlight and insulin sensitivity of course our diabetes simulator would have to consider it so said Chris have said okay Erbs delay exercise and time of year what else well I discovered that I usually have higher glucose levels and need more insulin when I didn't have enough enough sleep at the night before emotional distress and being sick has the same effect for a while I thought that eating low carb could save me from too much carb counting and insulin dosing until I saw the effect of fat and protein on my BG after a barbecue party with a lot of grilled meat so it's not always the carbs sometimes it's sleep emotional distress sickness or fat and protein Christophe said okay carbs delay exercise time of year sleep emotional and physical well-being and fat and protein next thing I noticed was the effect of injection sites of course my diabetes counselor had told me to change injection sites because if you always hit the same spot after a while the tissue will get bumpy and won't absorb insulin well you probably know those injection templates that look a bit like a subway map and I tell you to inject insulin into a different subway zone every day or start above the navel and work your way down words from left to right but to be honest I often forget where I placed my last injection or I just find it too inconvenient to reach for a different spot especially when an event of public and I don't want to draw everybody's attention so it's not always the carbs sometimes it's the injection site and kristef said okay carbs delay exercise time of year sleep emotional and physical well-being fat and protein protein and injection site then I started training for my first short distance triathlon short distance triathlons and I found out that high-intensity training has a completely different effect than aerobic training swimming is different from running and running is different from cycling and what works out fine on my triathlon rehearsal day might go completely different on a race day because when I'm all excited and nervous my BG will go up high and I won't need an extra shot of carbs before I get into the water and start the race so it's not always the curbs sometimes it's excitement or the type of training which means that our diabetes simulator would have to take into account my heart rate lactate value and adrenaline levels and kristef said how on earth are we going to simulate this and then there was the day that I actually fought myself into a hypo I had to finish an article for a magazine the deadline was getting closer and I was still a lot of work to do so I sat at my desk and wrote my B G was around 120 and I felt fine I didn't eat I didn't move I just wrote but I was so focused and I concentrated so hard that by the time I'd finished my article I ended up with a B G of 70 and feeling shaky so it's not always the carbs sometimes it's a hard-working brain and I told Chris if yeah you know our diabetes simulator we'll have to consider brain activity and he said come on I just don't know how to make an algorithm out of that there's one final example other hormones last year I was diagnosed with Hashimoto disease I got suspicious when I needed more and more insulin although I had lost some weight which usually goes along with needing less insulin right now I can still go without any making medication but finally my thyroid will stop producing a vital hormone just like my pancreas and we will see what that does to my and sensitivity finally a couple of months ago my John ecologist and I agreed that I'm now heading towards menopause I'm 48 now I'm done with family planning so that's okay with me but these changes in my hormone system also affect my body's response to insulin and I probably will be busy for quite a while figuring out just how so it's not always the carbs sometimes it's a cocktail of different hormones well luckily Christopher and I both have main jobs that keep us busy so we didn't have time to get into the diabetes simulative thing that much the last thing I heard crystal say about it was ah too many disturbance variables involved which i think is an engineer's way of saying that it won't work and actually it's fine for me to live without such a device over the years I've come to accept that living with type 1 means being part of a lifelong real-time laboratory experiment of course I try to keep up with all the different influencing factors 24/7 most of the times it goes works out well some days it works out super fine and makes me super proud and other days they're just a complete disaster but hey sometimes I think maybe those days occur because there are so many more things on the list I should take into account and had just haven't discovered them yet so I have a message to all the people who have been diagnosed with type-1 just recently yes card counting is essential but your body is so much more of a complex system and so is your mind and no matter what people tell you it's not always the carbs thank you [Music] okay so does your brain hurt right now cuz I'm trying to do a bit of maths there thank you so much I'm sure and it's true it is it's not just the cards just like it's not just the insula no it's not just the exercise it's it's you know a perfect storm or maybe an imperfect storm of so many different factors okay we are now going to move along to a different topic so I would like to introduce Paul oof we know who is going to sleep all the way he's from France and he's been living with type 1 diabetes for 20 years I haven't got my glasses on so I actually just realized I I can't read what that says for a long time though so Polly is actually an engineer but he was also a professional swimmer and you know and and actually competed from around France and through Europe and is quite amazing actually really he's very involved in the jobbies community in France and also in a number of different humanitarian projects as well and had to do with access to medicines in in African countries and he's going to be talking about new food new challenges new countries and it's is all about for Louie's travels this is a really interesting talk please enjoy [Applause] [Music] so I really like to travel and I've lived in many countries since my childhood so I lived for many years in Japan Saudi Arabia Italy UK Finland and China I always thought that traveling with diabetes is easy until I realized that I'm quite very vulnerable with my diabetes and that when you travel you need to get prepared so I'm going to speak about some of the challenge you can face when you are traveling and how I understand and also I'm going to speak about survival so the first challenge can be the plane so it can be difficult for so for many people to understand but when you are on a plane and you have diabetes you are less active because you are almost you are sitting all the time and usually also the foods I served is not quality at all so this makes your blood sugar usually raised higher than normal so violent well this was my meal yesterday and if I read what they write they say this one which was prepared with fresh products and quality ingredients foremost for more taste so so they think that this is good food but so this is a normal this is one of the example of normal meal you can get in the in the plane so it's like full of carbohydrates and if you choose to to get meal what they call for people with diabetes sometimes it can be challenging because there is no carbohydrate at all and the other challenge is usually they give as I serve you a lot of energy snack sometimes I have only only energy snack and when you are hungry it can be difficult to resist so what I usually do when I travel on a long long flight is that I usually bring with me some nuts or some seeds and this avoid meat with too much of the NLC food another challenge that you can face when traveling it can be finding a place to it so one of the one of the biggest fear can be food poisoning in some countries it's the risk of food poisoning is very high especially if you go to hot countries was I don't have the same level of sanitary than in Europe and food poisoning you can get it from what you eat and also what you drink I had really bad experience in Kazakhstan I was on a local market this happened a few years ago and there's something I really like it's keffiyeh fermented milk and I decided you had to take the risk of to try it and this was maybe the worst day of my life I still remember it and I will never experience it again this can happen this can happen or so if you already if you if you try to prevent it this can always happen so you need to be ready for it and this is something you need to speak with your physician before you go traveling because in some some times you will be alone and you need to know what to do so the best way still to under this kind of situation is to try to prevent it and you have different ways to prevent it so you can use Internet when you want to eat - in a restaurant you can try to find some ease I see some good recommendations on the restaurant this can be a good indication but in many cases when you are travelling in some countries or if you want street food you won't find any information so in this case when what I do is usually I I look at those like some local people in the restaurant writing the street food and if there is no one it's usually it's a really bad sign so better to avoid also something very important it's in some country was a risk of food poisoning is very high you should you should only eat cooked food and you should really avoid all vegetables which cannot be peeled which which cannot be cooked so I spoke about some challenge and I'm going to speak about ok what you can eat so all over all over the world you will find almost the same ingredients of food so you will find rice potatoes can be beans pasta it just and you will find some vegetables so they can be different from the country to another that can be our soft fruits can be very different from a country to another but usually the base of the food is quite similar and it's just cook in a different way so I don't have a magical receipt for to calculate like my insulin doses usually what what I do is have in my mind a reference for for a certain for amount of unit of insulin and I try to estimate if it's if it's more carbohydrate or if it's less or if it's the same as my reference and according to this I I do more or less insulin to my reference so this is usually my way to to calculate my insulin doses when I'm abroad so it's not so it's not always easy because sometimes you can get some surprise so it's important to test quite often your blood sugar and if you fail next time you will do better and also something very important when you eat abroad is a especially abroad is to weights that you get your food to do your injections the main reason is that like there two different reasons the passion can be very different from a country to another and the second reason is that in some countries it can be very spicy and you don't know if you will behave about to eat it so you can get some surprise sometimes something very important also to consider when you travel is like the level of risk you take when you travel it's not the same to travel alone and to travel in groups with some friends when you travel alone if there's some things that happen I mean if you are in a hotel you can always tell the reception that you have diabetes but in many place this is not possible if you go like in the jungle if you have a problem nobody will assist you if you travel in a big cities it's not the same like to travel in a remote area so the level of risk is very different from from from how how you travel and my biggest fear is usually nocturnal hypo so usually when I'm in place where I assume is that the level of risk is quite high because I travel quite a lot alone and in a remote place I usually try first with very healthy and also to avoid a fast sugar because this is going to provide some pitch some peak and then I will inject more insulin and what I usually and the best solution for me is usually to try to avoid this peak to do less insulin and this reduce the risk but sometimes hypo ha happen you cannot prevent you cannot prevent all the hypo so when I'm in a for example when I'm in France I usually usually use a fruit puree this is my favourite hyper treatment but when you go when you travel like four weeks or four months like I do sometimes you cannot go eat maybe one or two of these sometimes more per day I cannot go with 10 kilos in my luggage of and you cannot find this everywhere so usually what I try to do when I travel in the country I try to find the best hypo treatment so for example when I'm in Madagascar the best hypo treatment I found was like local sugar so it's not the same sugar we have in Europe I don't like the I don't like white sugar don't add too much when I was young but the location Madagascar's they do it handmade this is something I really liked and I was buying block of it and I was always carrying with me with me when I'm in Mexico City in Mexico Thailand but if you're in Mexico City it at each corner of a street you have a shop open 24 hours a day and you can always find some soda so I always have sugar on me but usually when I do a hypo I just go and buy a soda and this is the best way I found in Mexico see to it to handle my hypo so very important to always keep sugar and more than you think because you never know what can happen and imagine you go imagine you on holidays you go for example on an island four day trip and there's a big big storm coming and you get stuck on the island for a few days how would you survive if you have diabetes so this situation happened this kind of situation happened to me when I was in Madagascar so I was traveling by a biker I liked remote place I usually don't go to touristy cool place and I was in the desert when I was in the middle of nowhere there was no road it's we were with big cars and if unfortunately the motor of the car broke and we were really in the middle of nowhere so imagine the situation so we didn't know we didn't know how long it will take it would take to rescue us we had very limited food and water and on top of this I had no way to clean my hand so there was some water because there was some water but the water was really dirty the water was like green so it was not a hadrosaur to clean my hand in the dirty water either I could use a alcohol gel but which is not stable to make a blood control to control your blood sugar so situation was quite critical and so during the three days I could not do any blue the sugar level I had only to count on my feelings so the goods on the other hand the good thing was that there was some local tribes living there so there was some family some family and they were cultivating some rice and some vegetables so I so I had access to some to some food to some basic food which was I mean good for good for my diabetes management so usually when I'm in this kind of situation it's really the time I choose to write to write to my mom and to try to really reassure her and reassure her and I usually say okay everything is under control I'm in a safe everything is safe so but one of the main issue I had during this this experience was that I didn't have enough sugar I didn't know how long I would stay stuck in the in the desert and had a limited amount of sugar so what I did is that I didn't have many ways to to under this situation so I went for some explanation exploration of the area and I I recognized some family of trees and this this trees were like they were producing like very small fruits and so I asked the kids of the of the local kids living there they came with me we were like at least 10 people and we were cute we were picking up the small foods from the trees and then I made my own fruit puree wisdom so this was my way to trundle my hypo during the three days I was stuck in the desert so now you know how to survive if you it's same situation happen to you so explore the area and if you are lucky you will find some food so mysteriously you need to be ready for the unexpected and you need to have always with you plenty of diabetes supply when you travel and also plenty of sugar because you you never know what can happen and also something very important that I wanted to mention is that you need to you need to take care especially of your insulin insulin is very sensitive almond is very sensitive to temperature and you can damage it very easily when traveling in a hot country in hot countries and and if you damage your insulin I can tell you that in some in some place it's very difficult to find insulin and you can you could get in big trouble and the most important is enjoy your trip [Applause] [Music] actually my heart rate was actually quickening listen to that strawberry in Madagascar so I think Polly you are clearly a candidate for survivor because you can make fruit puree in the middle of nowhere okay so we're going to to change I guess direction a little bit now we have two speakers now that I'm going to introduce so we have Queen Fisher who was diagnosed with Taekwondo bees when she was three years old and her mum Leanne Kalyn tine says that she went into mum mode learning to count cards calculate insulin and to give injections Queen isn't is active in local theatre and film and enjoys making art and Leanne is the author of the book kids first diabetes second and the website at the bit website D mum vlog please join me in welcoming click Queen Eliane to the stage and this is a fantastic girl I just love this way [Applause] [Music] so hi my name is Quinn and this is my mom and we're going to talk about birthday parties sleepovers and school lunches and recently I was sitting down with a group of parents who all had kids with diabetes and someone mentioned the birthday party problem and I was like what's the problem you go you eat the cake you get insulin like there's no problem but actually there are problems with birthday parties and that's the food the activity and the supervision so parents who are hosting birthday parties might ask you if you want them to prepare some special foods for your kids with diabetes and our answer is always no like we tried to stay away from artificial sweeteners and sugar alcohols and things like that so Quinn just eats whatever whatever everyone else is eating I grew up not really drinking regular soda I always had like diet and so I don't drink regular at all and she's a big water drinker too yeah so another thing about birthday parties our philosophy is eat the cake and skip the drink because a lot of times what the what they're serving is like punch and really high carb sugary drinks and and it's our opinion that cake is totally bolus worthy yeah right yeah yeah even when she was on injections was it worth it yes yes it was worth it's good injection so a lot of the birthday parties that our kids have gone to involve a lot of physical activity like what's one of yours that you I had a birthday party at the place where I used to take gymnastics and I know I had a friend whose birthday party was at a park and so a lot of kids birthday parties are very active yeah in her gymnastics birthday party by the time it was we were ready to eat cake her blood sugar was actually pretty low and so she needed to get some carbs in her also the excitement from the party can raise your adrenaline which can raise your blood sugar and and one of Quinns tips is that you need to take the time to if you need to to sit down yeah you need to sit down and take care of your sugar because if you don't do that then you're just gonna feel even worse later and it's best to just take care of it and then rejoin the party then feel terrible later on and have to sit out for longer yeah one of our tips is to especially when the kids are younger is to have a parent stay with the kid at the party and in our family it's usually her dad who yeah go to parties or go to party person and and but you can stay and help cuz you know when you have 15 eight-year-olds running around parents always appreciate another set of hands so you can bring a book and just have some me time off to the side and then your kid can just come to you when they need blood sugar check or or to bolus for cake or something but the main point is with birthday parties is to let your kids have fun and not let diabetes be the focus of the of the party yeah um I remember my friend had a birthday party where they were just like let's play war which was not a good idea but um and everybody we were all in the backyard and we were running around and I remember my blood sugar got really low because my adrenaline like spiked up because everybody was like hiding in the bushes and it's and I had to sit out for a little bit because my blood sugar was low and I think that a part of me wanted to join back in but it's best to just like sit out and not make it worse yeah and as Quinn's gotten older she's been able to self manage and I was I always joke that now now that she's older and can do everything on her own I just slowed the car down enough to push her out but yeah but now that she now that she can you know check her own blood sugar and operate her pump and yes sir carbs you know she can she can pretty much self manage on her own but just to remember that you're only a phone call away and so or a text so that the parent or the child can call their text if they need some backup and I think the most important part is just like enjoy the party enjoy the cake and your child's blood sugar maybe 300 a couple hours later but just deal with it you know just give it and swing and move on and and chalk it up as a good day so yeah okay we're moving on to sleepovers so I'm probably not the best person to talk about sleepovers cuz I never did that when I was little I've had some more recently but I think the reason why I didn't do them when I was little was because I didn't know how to self-manage and so I've learned how to self-manage now but when I was like six I didn't know how to self-manage and so um and I guess my parents didn't really trust him you know we did trust my parents though because they my parents watched my kids both my kids when they were little so that I could go to work so she's her whole life has had sleepovers with her grandparents and my mom calls me every time it's never a diabetes free night because she always calls me in the night saying this is our blood sugar what should I do yep she wakes me up - yeah I can I can manage her blood sugar in the middle of the night without her even waking up her remembering but my mom for some reason always wakes her up and then calls me but sleepovers present the same similar challenges his birthday parties you have to find parents that you can trust to leave your kid with and just with birthday parties the more independent they are and their own care the easier it is and if a kid can check their own blood sugar and count carbs and figure out their Bullis --is then then they'll have a much easier time at a sleepover and and and just with birthday parties you're only a call or a text away from that I know that when I was little I had two friends whose parents had diabetes and so I when I went over to their houses for like birthday parties or playdates or whatever it wasn't a big deal because their parents already knew how to take care of everything and if if you're a parent who insists that your kid has an overnight blood sugar check you can ask the parent to set an alarm on their phone to get up and check your child's blood sugar and then tell them to call or text you if it's above or below a certain number that you choose and for younger kids you can pop in and out as needed to come over at dinner time to count car give insulin or again at bedtime and what some of this idea of a late over actually was brought to us by parents whose kids don't have diabetes but this this late over is a thing now where you come over and you do all this stuff like a sleepover and get in your pajamas and you do the bedtime story and everything but then when it's time to go to sleep the kids go home so that works well my dad still does this thing and he did this thing when I was younger but no it's my grandparents house where you'd usually stay like two hours after he dropped me off talking to the family socializing socially or socializing eating dinner yes and then like whenever he comes back they're always just like hey it's you and it's like okay she doesn't give her space because he wants to join well actually a lot of the times that the the other people's birthday or not sleepovers I just be like don't leave me because it was terrified because I never the first time I had a sleepover at a friend's house I was like dad please leave I want to go home but um yeah so for um for I think it was your 10th birthday party and she had she brought a party she had a sleepover party so if you're not comfortable with your kid going to someone else's house to sleepover bring the kids to your house except for then you're not gonna get any sleep yeah because they oh my gosh it was like ten ten-year-old girls and I kept yelling go to sleep everybody's like let's jump off the couch and on to the giant mattress yeah they didn't sleep I didn't sleep nobody's Muslims and just with just with birthday parties you're just a phone call or text away okay okay moving out of school lunches so at school we've I was put in place like to have the Care come to Quinn as much as possible because we don't want her missing instruction time class time yeah so the way we've had it set up to deal with school lunches is that the nurse comes in and checks her blood sugar a few minutes before lunchtime that way Quinn can walk with the class to lunch and and and but now that she's in high school she does her own blood sugar management before she once she gets to the cafeteria she does that and we've opted to pre bolus for her lunches and especially when she was littler we didn't know how much she was gonna eat for a meal so we just decided that for her we pre bolus 30 grams of carbs that way we get the insulin in her and working and then at the end of the lunch the nurse checks to see what she actually ate and counts the carbs and does all the diabetes math and figures out her injections I know at the beginning of the school year every year but people who I don't know I was like God you need to go to the hospital and I'm just like I just prick my finger I'm like no I'm fine yeah and and in like priests kindergarten and stuff whenever I got a shot everyone like start freaking out they were just like what are you doing it's like I'm doing medical we've always done diabetes management wherever we are like we don't we don't hide it if she needs an injection she gets an injection and she like in elementary school these two kids walk past me and they're just like we we heard that you got diabetes from eating too much candy did you eat too much candy and I was like six weakness happened and I was like no I was I was very shy so one other thing that we had in place especially when she was littler was that she was allowed to go to the head of the lunch line to get milk or hot lunch and some of the kids are always like yeah she's cutting in line but you know they learn quickly that it wasn't it's just you know yeah one of the perks so then at the end of lunch she gets the rest of her insulin and the nurse does of the diabetes math and Quinn thinks that there's something funny about having a nurse follow her around okay well when I was in elementary school I had my Paras dyed pink and the nurses hair was dyed purple and we looked kinda similar because her hair was it's kind of similar it's everyone was like he's the nurse your mom and like people known for years we're just like Oh is your mom the nurse and I'm just like no she's not no why would you think that they're like well she's always with you which so flinging around you look similar and I'm just like no the nurse is not my mom so that takes me to something that I cuz I'm in the in the schools a lot telling the nurses don't have her don't have her like like I don't want them next to my child all of the time because socialization is part of lunch right school lunches it's more than just eating it's a it's a time to talk with your friends and then the other really important thing especially for younger kids is recess and so I almost instruct the nurses to like do it as quickly as they can yeah so that she can get out there to be with her friends and I know when she got an insulin pump when she was in kindergarten that was really helpful for that because as soon as Quinn heard the beep that she was getting her insulin she could just take off so and now that she's in high school she goes to the nurse after lunch she just makes her late for her next class every single day and then I get notifications automatic notifications from the school that she was marked absent and I always have a pass yeah and I wish that they could just have like a note in their file saying she's diabetic she's gonna be late for her next class every day but no no so final words oh okay I was very confused of why the card started saying birthday again so yeah in conclusion just because I have diabetes doesn't mean that I can't do anything any other kid can do I can still go to birthday parties I can still have sleepovers I can still enjoy lunchtime and socialize and diabetes shouldn't hold you back from doing anything else any other kid can do yeah and my advice for parents is not to live in fear just make a plan and make it work and your kid can go to birthday parties and sleepovers and have their social time at lunch what a fantastic way to round up the first half of our dig today so we're gonna have a little break now we've got about ten minutes where we're gonna stretch our legs and we're gonna go for a little wander just out there and then come back in for another four amazing amazing talks but I think you can see we've heard four talks are just so diverse and you know that old thing about you know there's one size fits all for diabetes it's really it's never going to be like that so I'm please go on stretch your legs and come back in here another four amazing speakers okay so we did just hear four really different topics from people managing their diabetes in different ways and we've got the same happening in this half of the program so I'm going to um now introduce Sarah mobic and I'm absolutely thrilled that we have this topic on on the program so let me just tell you a little bit about Sarah first she was diagnosed with type 1 diabetes more than 16 years ago and Sarah writes one of the biggest blogs at my diabetes blogs in Sweden and she uses social media and she's very active on social media and she uses it to inspire to motivate and to give people with diabetes energy and to find a way to make their dreams come true and Sarah's topic is how managing a diet goes too far and it's the connection between diabetes and eating disorders and I thank you so much for giving this talk it is a topic that we don't talk about enough and yet it affects so many people living with diabetes so thank you for for sharing your story please join me in welcoming Sarah so it is so easy to worrying about food am i eating the right stuff am i eating too little home-cooked food am i eating too little plant-based am i eating too much fast food I mean these are the questions that people in general might have but with diabetes type 1 there's tons of questions just with the blood sugar and the insulin how much insulin would I need should I split my bolus how much fat is it should I eat the whole plate or how hungry am I and these questions they are so many and I can keep going and going with these and these questions are happening every single day with people who have diabetes of the 16 years as a diabetic I've heard many many different kinds of guidelines many were very very irrelevant but some of them are actually good food is something that we can't get away from we need it to live to survive but because it's always there it's a center issue of a diabetic it's an ongoing struggle of eating to live while trying to maintain the best blood sugar level as possible speaking of I've experienced that most of us are a little bit competitive when it comes to showing our blood sugar curve in the end of the day however this constant morning monitoring of food and glucose levels was something that took my competitive to the next level and of course with some other combination with external factors in February 2017 I got the diagnosed anorexia nervosa it was one of the toughest periods in my life I can I consider myself educated intelligent beautiful and a success a successful woman but a few years ago I was trapped with this eating disorder and it all started out so so simple I I moved back home I was educated in Los Angeles for one year I come back home to Sweden and I moved to the upper north called Suns van and after two years I moved back home to Stockholm and I lived in a daily life I didn't really enjoy so in a short period of time I went through a separation I changed jobs I moved around I didn't actually had a home and I starting to ask myself if I should starting to count carbs and if I should maybe run one more mile every day so I mean my internal competition for getting such a perfectly straight blood sugar became so much stronger and it kept getting stronger and stronger slowly I began not just losing my weight I also lose my lost my perception of reality my mind my friends and everything that I cared and loved about anorexia had 100% control over my life the start of my eating disorder was to make the decision to eat less and to not even eat carbs at all so I was getting the the good blood sugar curve at the end of the day and my a1 a1 C was perfect so this was something that was so hard for my endo to see and they couldn't even realize what was really going on with me did you know that girls and women with type 1 diabetes are twice as likely to develop an eating disorder as those without diabetes after a long time of too much work low energy intake and I took the no-sleep to the next level I didn't slept at all I woke up one morning and I couldn't open my eyes I was so swollen like a Michelin Man you know the car and of course I got so terrified and I couldn't even call my family I was totally afraid and it was a wake-up call Julie so what do you do when you don't want to call make a phone call he's starting to Google I starting to Google my symptoms and I I figured out that I had a severe eating disorder and it's a very protein deficiency it was a wake up call in spite of the long period of being sick I hadn't until now realized the seriousness of my condition I think that my friends and my family tried to talk to me about this but I couldn't they couldn't really connect with me so it was a hard time for them as well the next day I went to my work and now the time is one week before Christmas 2016 I quit my job I had no idea what the future was going to be like but I knew I had to do something real quick to to fix this so I called a clinic that helps people with eating disorders back home in Sweden and I asked them if they could take me and I'll told I told them I had diabetes type 1 one month later I got enrolled in what we called in a day care patient I was there five days a week from a.m. to 4:00 p.m. every third week for six months my weeks were filled with psychotherapy eating of course we were laughing crying and I was trying to handle my blood sugar levels as good as I could and of course trying to find myself but this time I had to take this time to just recover and find myself it was so important to get back my family and to get back maybe some few friends again it wasn't easy at all but after this six months I had I recovered so well so I could like trying to find myself again and I could start to find a new job and to begin this new better part of my life today we are so fed up without being told like how we should lie look like how we should eat what diet we should have in our like daily life and so on I believe the society is so sick and this becomes even more apparent for people with diabetes when we keep getting different types of guidelines for what we should eat and what we should not eat because of this and because of the focus is more on our blood sugar curve and a1c level it's hard to know if a diabetic person has an eating disorder or not so a healthy eating plan is a center part of managing type 1 diabetes along together with insulin injections or pump and activity so this means that a person with diabetes will have to focus on their food intake the rest of their lives so this can sometimes cause problems as you may know that if you are having a hypo you need to eat and this can cause anxiety or trigger like bulimic behaviors at her like routine meals snack and ongoing diabetes management can be disruptive and placed limitation on an individual's life which can cause so much frustration I was outpatient like I said after six months I had to take this just to to get my life back for me has been so important to have the few friends I have left and of course my lovely family they were actually my motivation to to be me again and to find happiness in life one thing I had to remember and still today have to remember that eating disorders requires so much much on my willpower and discipline to get out of there's the lack of education and awareness to identify if a person has an eating disorder or not getting people with eating disorders back on track when it comes to diabetes management is only the half of the battle the other side of the recovery is the hardest part and I'm talking about your mind I do still have days when I'll put on my clothes looking myself in the mirror and just want to go back to bed but the difference now is that I don't care [Applause] thank you so much there it's such an important important topic so I really really thank you for sharing your story okay let's change a little bit now and I'm going to introduce Bruno Hillman who was diagnosed with type 1 diabetes at the age of 18 in the six years since then he has become a dedicated activist in his home country of Brazil and to help create all we have somebody cheering okay excellent Juliet okay so to create greater awareness around diabetes he took his passion for running and developed running for diabetes where he will run a marathon in each of the 27 state capitals in Brazil in a single year really that is so impressive and he's an adj board member which I'm told is a patient organization in Brazil he's an IDF blue circle voice member as well and he is going to be talking about my vegan life making life choices with diabetes thank you Bruno [Music] [Applause] [Music] Thank You Ren's offering that for the inter direction good evening everyone good afternoon in Brazil so I'm here today as it was said to share a bit about my own experience with being vegan and living with type 1 diabetes is important to this claim that I don't have the aim to convert anyone into veganism I don't intend to like share any recipe of a specific diet this is my own experience so before like making any decision related like to diet please please please again talk we are with your nutrition and all your healthcare team so a really quick introduction about myself and I think it's important to highlight the reason I decided to start running back in 2013 when I was diagnosed I wanted to thank my father somehow for all the love and care he have gave me throughout the years so in 2014 I took the decision to start running so for me running was something really boring and I start from literally like running zero kilometers and till the 42 K 195 meters in May 2016 I completed my first marathon with my dad and then as I said running became a passion I was bitten by the mosquito and that's it so true raining I used as a tool to empower and motivate other people not just with type 1 diabetes to adopt a healthier and more active lifestyle so what's veganism is about most people tell me oh ok so you don't we it like meat right but you can drink milk oh yeah you don't drink milk but you can have honey well the thing is veganism is about not just plant-based diet but also avoiding as much as possible other source of animal products animal goodies and anything that is tested on animals or it has animals involved in the process and why did I decided to become vegan it was more like a political and decision when I became aware of all the environmental and social impact and harm that animal farming has specifically in Brazil so it wasn't just making an impact of other other other people other animals but also in our environment and it's important to say that I hear constantly oh yeah so you have type 1 diabetes like can you be vegan to be honest I believe that with the right perspective with the right mindset you can be whatever you want so it's not like it wasn't going to be type 1 diabetes that would avoid me or to become vegan for like a personal choice so I would like to share like how my daily meal would look like and I eat a lot of protein over like a hundred grams and doesn't come from like animals is just only plant base I eat a lot of carbs and it's also because of the marathon training like it's a mix of balancing protein and carbs and the right type of carbs and the right type of protein according to the time of the year I am with my training I avoid as much as possible and it doesn't have anything to do with vegan but I avoid as much as possible white flour and nutritionally empty food so I I'd say that I eat healthy independent of being vegan or not because you can be vegan and see with like a lot of trash food which are processed food and like that doesn't mean being vegan is healthy but there's something really important to highlight I love chocolate so no matter like in which period of my training I am I always eat chocolate and that doesn't mean I eat a whole chocolate bar but I eat small pieces and I think as everything else with type 1 diabetes is just a matter of balance so yes I do eat chocolate I learn how to enjoy and appreciate dark chocolate but yes I eat chocolate so what is the impact of being vegan on my diabetes so most of the people say or actually it's a really common mistake and independent of having type 1 diabetes or diabetes in general that most of the people who become vegan they tend to switch out the animal proteins for carbohydrates and that's a risk because carbohydrates if you think are easier to be found no matter you are than plant-based protein so something that people told me yeah you cannot go vegan because you have type 1 diabetes that's gonna impact like your sugar levels is going to impact your hba1c and I would like to highlight that last month I was 80 percent of the timing range and the time I wasn't in range it was mostly when I was running because I need to keep my sugar levels up in order to avoid having like severe hypose so here's like a graph and I became vegan in October 2016 and my b 1c was around 5.7 and the last exam that I did it was 6.2 so of course it increased a bit but I wouldn't say it was because of like the amount of carbs I started eating for being vegan I would say that is more related to the amount of raining and because in order to do all the races that I do I need to keep my sugar levels a bit up so yes like for me personally it becoming vegan it didn't have a great impact of my on my daily life and regarding like the amount of insulin that I use it's because as I still like produce a lot of insulin the amount of basil versus bolos that I use I tend to use over 80% of bolos because as there's no like a daily routine in terms of training so I cannot keep a single basil that would affect the days I'm not training so I I tend to use more bolos than basil but that's not because of like being vegan it's just about because oh like my daily life routine and the lifestyle that I live so what are the pros and cons of being vegan I'm not here like to try to paint a painting like picture with like rainbows and unicorns no it's not that like as everything else they're like challenge and everything else is the good side and the bad side so for me the balance is to work so I would keep doing vegan and if there's a time that being vegan became like so challenging and so hard and mangling to cope with type 1 diabetes because I'm I need to keep in mind having type 1 diabetes is my type 1 priority in terms of health so if I make any decision that gonna impact my health I would definitely like this I not should become not vegan anymore but mainly the pros are related to the relationship I developed with my body as I said my body and not talked with talking about my physical body but also my my mental and my spiritual body my body in general is the most precious thing I have in life so becoming vegan made me realize so many things about the choices I make throughout the day so I would say that I became more connected with my soul I became more connected with energy and I would say that I became healthier because I got more knowledge related the impact of food not just in my body but in their environment but I'm sorry to say but for me the worst part or the most challenging part of being vegan is the gas effect like I'm sorry please science develop a plant-based protein that doesn't make you fart that much like it's really challenging I mean I basically eat fibers 24/7 so as my digestion is faster you know what happens but another point that is also important is the price and the affordability of healthy future processed vegan food because you can't like as I said as any other type of diet you can find cheap food but that doesn't mean it's healthy so vegan food mainly like his next protein bars powder and so on they are still not accessible for most of the people worldwide and it's not everyone who is capable or able to cook their own food because they work like so many words hours that they don't have the time to cook their own food and another challenge is related that the word is not vegan yet and the word is not ready to deal with vegan people and that comes to true challenge first running like balancing the right amount of proteins the right amount of carbs is really really challenging like and because I'm vegan there like there's no so many vegan carbs gels available so last year when I did the New York Marathon I use to have I use 14 gels of carbs in 4 hours 15 minutes that's over like 300 grams of carbs like it was insane and because of like my work I travel a lot I lost track of how many flights I caught this year but if I had to bet I would say over 60 and the biggest challenge regarding traveling at it was mentioned before is that find food that you can eat and I mean I spend a whole week in Mexico and by the second day I was so tired and so tired of like having deep fried food and yes they are vegan but I mean is that good for my body is that good for my diabetes so when there's a point that I cannot find vegan food or I cannot find healthy vegan food I make the decision to go vegetarian it's not something that I would say I'm proud of but my health come first and you need to make the choices to he to live a healthy life but of course you can always have a chocolate dessert being vegan so to conclude my speech I would like to say that no matter if you decide to be vegan vegetarian or whatever you want is just about the amount of dedication and love you into it for me becoming vegan was something important so I put a lot of energy a lot effort and a lot of love into it and you can be and do whatever you want you can have type 1 diabetes being vegan and just do five marathons in six months as you wish thank you oh you make it sound so easy five marathons in six months off you go thank you so much very nice now while we're talking marathons let me introduce our next speaker Melanie Stevenson was diagnosed with type 1 diabetes at the age of 13 but that has not slowed her down and you are going to hear all about that in her talk now she started athletics at 16 and reached as reached international competition level she continues to train six days a week she's a dietitian and still manages to find the time to promote the benefit of physical activities through live presentations through her vlog and her blog and also through social media at life sport diabetes you really are a force to be reckoned with Melanie in 2012 she was selected as a carrier for the Olympic torch in the UK and that really spurred her on to do even more to help others and so she started a peer support group in her spare time that she runs in her local home area and she's going to be talking about marathon training with car or with diabetes and it's not as simple as carb counting please welcome Melanie to the stage thank you [Applause] [Music] so today I'd like to talk to you a little bit about my journey with diabetes and also managing it with sport and carbohydrate counting so as we said I'm from Wales in the UK and I've had type 1 diabetes for the last 17 years seven of those years have been on multiple daily injections and the other 10 have been on an insulin pump so I think that I've got a good kind of combination of knowledge of what it was like to do sport and manage my diabetes and my carbs on both kinds of treatment so as diagnosed back in 2001 at the age of 13 and it was only three years later that after I was diagnosed I took our politics because my pediatric hospital diabetes team were absolutely sensational they didn't say no when I said I wanted to do sport they just we just said how how are we going to make this happen and that's something that I've carried with me so that took me through to high school and that was how I discovered athletics was that my school was encouraged by my diabetes team to make sure that I was always included in sporting activities rather than excluded excuse me so initially my events on track were the 100 and 200 meter sprints and relays it's a really short distance and I represented my country on over 25 occasions in athletics but what means an awful lot to me is the fact that I was on a team with people who don't have diabetes so we weren't being judged on the fact that I had the condition it was all about the time and the time that you put into training and the training that I did oh I do is six days a week things like weight lifting sprinting on track short distance long distance running up and down sand dunes because we have some monstrous ones in Wales so it really is demanding on my body and on my diabetes as well but has taught me a lot about how to manage the condition but it was June of this year where it was time for a brief change because myself and a couple of friends the diabetes put our heads together and there was this crazy thought that we could break the world record for the most people with type 1 diabetes to run half-marathon now you can imagine as a sprinter this was a completely alien concept to me but I took it as a challenge because I do like a good challenge and over 70 of us did compete in the half marathon on one of the hottest days of the year which as you can imagine was horrendous in terms of thinking about diabetes management and insulin management but we all crossed the finish line safely regardless of how we were managing our diabetes how we were managing our carbs we all managed to do it together and break that world record so it really is possible to achieve your sporting group dreams when you put your mind to it and I've been very fortunate that my blog has been named the top four diabetes in sport which I type one diabetes in sport which I started after I carried the Olympic torch because it drew a lot of interest in a way because people kind of said to me but you've got diabetes how are you doing sport as well how how do you manage it how do I manage it people were saying and it's not that I give advice to on my blog but I just kind of show that it is possible if you put your mind to it so the challenges of say carbohydrate management and type 1 diabetes are that type 1 is all about balance so whether it's balance in blood glucose levels balancing insulin or balancing energy which is what physical activity is about it can be quite tricky and a lot of people say to me that they're really genuinely worried about hypoglycemia which i think is a completely legitimate concern because it is frightening and the thought of physical activity increasing that possibility is something serious to consider however I think that with careful planning and management it is possible to kind of move around that and I think there are many many benefits for physical activity so whether for me I saw really early on that my blood glucose levels were better because my insulin sensitivity was better I felt like I had more knowledge than my competitors about my nutrition and my diabetes because I had a little bit more to think about it made me feel empowered as a person with the condition because as I say I didn't feel like I was labeled as someone with I felt like I was labeled as an athlete and I think physical activity is really good for mental health as well because as has been mentioned diabetes is a physical condition but it's got a psychological impact as well so things that can impact that positively in my book are really good and the thing that links it all together is carbohydrates because carbs are so closely linked to how we manage our blood glucose levels and our insulin that when you add sport into the mix it can all be a little bit scary but to give you a brief kind of background in terms of carbohydrate loading so it's just the concept of loading your body with carbohydrates the right amount so that you can store the the carbs glycogen and the muscles to be used as energy when you're doing the physical activities and for me unfortunately because in the early days there wasn't a lot of research there wasn't kind of papers and knowledge on sport and type 1 and carbohydrate management I did have to learn quite a lot through trial and error through my healthcare professionals I kept a training diary which I found really helpful to identify patterns in my training and my blood glucose levels and then when I got my insulin pump I was very fortunate that I did a diabetes education course in carb counting so that was absolutely revolutionary for my diabetes because I felt like I was in control of what I wanted to eat rather than the diabetes controlling me or the insulin controlling me and making my decisions for me which was a real turning point both in terms of my sport and my empowerment so to talk about carbohydrate loading the best way to explain how I do it is to kind of divide it up into the phases that you have to think about it in so if I've got a competition coming up in the next week or two I start thinking about my carbohydrate loading because I want to kind of give my body the time to store the glycogen and to have it available later so I'll be having things like complex carbohydrates pasta rice kind of the slower release so that it's a little bit easier on my blood glucose levels because I find that if I was to have high blood glucose levels leading into a competition then the likelihood of dehydration is much greater and so the likelihood of lactic acid is much greater and lactic is not your friend when you're trying to compete and so leading up closer to a competition the night before I'll start thinking about both carbohydrates and protein really closely because I want to slow down the release of carbs overnight because as you can imagine being a sprinter explosiveness whether that's out of the blocks or whether were half marathon training and across the finish line is incredibly important so if you've been up in the middle of the night because of hypose and not the right nutrition that's going to affect performance and you're also going to be thinking about that on the start line when really you want to be thinking about performance so then we've also got the race day itself so again a lot to think about in terms of performance but you do just want to keep focus so I tend to prepare really well I made sure that I bring my own carbohydrates with me so that I feel independent in my management I'm not worried about where my next source of carbs is gonna come from I know where I am with it and of course I'm frequently testing as well on the morning of the race and throughout the day and breakfast will be something like slow and fast-acting carbohydrates so really kind of using my knowledge of carbs from my education to kind of manipulate them to work for me on a race day so it might be something like porridge and berries for breakfast or a banana sandwich homeo toast which was my my lucky breakfast on the day that we did the half marathon that did me really well but it is a personal decision on what nutrition that you prefer I also always make sure that I have breakfast on a race day quite a few hours clear of the race itself because as you can imagine on a full tummy it could all go a little bit wrong and I want those kind of carbohydrates to be digested to know where I am with my insulin and again to feel in control of my performance but one of the key things that I think I would like to convey to people who are thinking about doing sport or have had a bad experience in the past is how important carbohydrates are after you finish your exercise nobody talks about it beforehand but afterwards is such a window of opportunity because whether I'm training or competing I have my carbohydrates or my meal my evening meal an hour or two after I finished exercising because when you're exercising there'll be an amount of kind of glycogen and carbohydrate that you'll burn up that if you don't put that back in then that's how the lows can happen overnight and of course I'm testing my blood glucose levels before I go to bed because I want to sleep securely knowing that everything is okay but that's something that healthcare professionals of course can talk about as well so in conclusion I think education and knowledge are absolutely key with physical activity in carbohydrate loading as I said I didn't see it as a disadvantage to my competitors and I had more to think about I just kind of took it as a positive that this was something that I could be aware of and feel empowered by and again for anybody kind of thinking about doing physical activity or making a start with it I would encourage you to do what I call thinking big so b.i.g think about blood glucose levels what are they doing what do you need to be doing with them how are they going to behave then I think about my insulin have I got insulin on board which sometimes can be a source of hypoglycemia do I need to make any adjustments to my insulin before I do my physical activity I last of all G for glucose so as I mentioned carrying a supply of my fast-acting glucose whether I'm at the track whether I'm out on the half marathon course because I want to be independent and have the safe knowledge that I can manage my diabetes when doing physical activity so thank you very much for listening thank you that's such great advice pinky okay we're gonna round this up now and we're finishing with Bastion how come this is certainly you know last but not least Sebastian grew up in a small city in northern Germany by the sea bastions all about the sea every time I catch up with Bastian we wind up at a shipyard somewhere this true story it's no wonder then that his own personal journey journey as an advocate began on a three-year sailing voyage that talking through the Southern Ocean around Cape Horn and across the Atlantic he says it was the support of other people other diabetes bloggers and advocates that got him through and he's now paying it forward and boy is he paying it forward in big ways he's the founder of detox the diabetes online community he serves on the board of diabetes D Eve and last year he was elected to the board of the International Diabetes Federation in Europe he's also published a book and made a movie of his sailing experience because he's an overachiever clearly and he is going to talk about this is a really great way to wrap this up actually planning + estimating + guessing + timing the math behind mealtimes Thank You Bastion [Applause] [Music] right hi it's an honor and always a challenge to go last after such a long afternoon evening with so many great speakers a challenge because we've heard so many different perspectives on the mealtime challenge so many different great stories from so many fellow patient advocates and also how to overcome these challenges so there's actually not that much to add so not really so I will be very honest with you and I will instead talk about where I fail and I will tell you where I fail and why I fail and how often I fail and by the end of the talk I will have a little challenge for you that maybe will make you understand a little bit better of why something as simple as just counting the carbs or not just counting the carbs can be so difficult and hopefully develop a little bit of empathy for what we and so many others out there are doing every day so I've been Taiwan for more than 20 years and I do think that I have a fair bit of knowledge about the carbs and everything that goes with it like all the others here like all or most almost many people out there living with diabetes everybody kind of knows how to do it and some get it better and some get it not so right I don't get it right quite a bit but we all kind of know about the mouth and I think we've heard a lot about this today let me just recap this here's what a person with diabetes should do when getting hungry you don't just go to the fridge and grab whatever you want to eat right that's that's not it you have to plan ahead you have to plan ahead because timing is important so you need to know about the insulin duration and the onset you need to look at your CGM or test your blood glucose because you know to know where your current levels our because that has an effect on how much time you need to wait between injecting insulin and eating it has improved slightly with new insulins but this is how it should be so you have to plan you have to get the timing right you have to know about your insulin kind and the duration that it that it works you also have to know about not only the cars but about the fats and the proteins and the fibers and whatever else is in your food because that also has a huge impact on how long it takes to digest that kind of food and how long the carbs take hour or the glucose takes to to rise and then you start doing the math the calculations and as we've heard from many different angles and perspectives today there's tons of other factors that go into it from stress levels to whether you're sick to your whether you're getting your period as a woman or whether you just didn't sleep well or have stress at work it all kind of features so it's not just a simple equation it's a ante I think it said this very well this kind of simulator becomes bigger and bigger and bigger then at the end you might arrive at a number and then you multiply that with your insulin sensitivity factor which changes over day and then you inject whatever kind of number you arrive at and then two hours after food you check or you use your CDM to check and you see whether you got it right or not actually oftentimes even if you do that you might find out you're completely off the mark and even if you do it the exact same way the next day having the exact same food you might find out that the result is different nobody's going to explain you how that comes but this is how it should be and we're not even talking alcohol and parties and all this other kind of stuff now reality check everyday life day to day for me my day starts in the morning usually with taking my little dog Jamaica for a walk when I do that you know when I do that you know I take to my car we go out for walk and we passed by my favorite bakery it's I live in Prenzlauer Berg in Berlin it's just around the corner this is a place full of bakeries and stuff so I go in and get a coffee to go and with a coffee to go I usually get across on I just love croissants now being a fairly well-educated type one diabetic I know croissants is not for me and not for anybody of you out there even if you're fully healthy it's not the best kind of food to have in the morning you know it's it's it's white now it's full of butter and it's not really considered how but I just love croissants so I'm having a croissant almost every other morning I'd say I have at least one to two hundred croissants a year 9:00 a.m. in the morning so you know I'm still a bit tired and going out there and my dog wants to go to the park and play with the ball and getting my coffee to go and my croissant to go and I kind of get my insulin to go as well like it's it's the same traceur every morning it can't be that hard you know I kind of checked my blood glucose when I go out I have my cgm so it's a kind of rough guesstimate that's how I call it I don't really do math it's kind of happening you know dog hear me already planning the day ahead getting coffee insulin croissant to go is like it's an automation kind of it's I call it a guesstimate guessing estimation experience gut feeling CGM it all kind of features in there but trust me I don't do math not really now you might say well that's your own fault then if you if you come up with how did 200 something that's that's your fault right you should you should do better I told you in the beginning this is there's the difference between what we should do and what we do in everyday life and you know what when I in hindsight look at my CJM sky skyrocketing I know what I did wrong I sometimes even know that I'm injecting not the right units of insulin while I'm doing that but that's life man it's it's kind of you just go about it so I even even when I know I could do better or in hindsight I know I could have done better I feel a bit bad saying this but this is I here's the thing those of you who have who have not so much experience with living with diabetes might say you know you should do better trust me on one thing all the other patient it's here and definitely all the people out there watching this right now and living with diabetes every day they will maybe not 100% agree but they know exactly what I'm saying they I think they feel me because this is not the one cross saw this one day this one morning this is every morning and it might be your croissant it might be your lunch break or it might be you heading to work being hungry or it might be a dinner at a friend's place it's this is everyday 24/7 for when you get diagnosed until probably end of your life that's what makes it so hard no exceptions so it's not the carbs it's not the math it's the freaking discipline I'm being very honest so yes today is called the mealtime challenge here's a small challenge I have for you and don't worry it's not gonna involve injecting insulin it's not gonna give off insulin or anything else like that but imagine I'm your new dentist and you're coming to me because you have toothache your other dentist maybe he left town or you moved or whatever I'm your dentist and you're coming to me and I'm like well did you brush your teeth this morning and I I'm sure you all did right next question did you are using dental floss in the morning like you do that like regularly hands up like did you do that today this who use dental floss this morning one two good four five okay you're six all right all right good well here's what I'm gonna tell you as your new dentist from now on and let's make this easy on you right let's do this for one week it's a challenge for all of you in here not for the type 1 or type 2 use for all the others it's the challenge for you one week only that's seven days right one week only from now on every morning you floss your teeth are you with me can you raise your hand so I can see that all the none okay one week every day you don't forget cool that's pretty good I'm your dentist I'm your doctor you do what I say this is how the doctor-patient relationship works right so here's the thing we're not done I want you to do this every morning and every evening and I want you to view at 8 a.m. and 8 p.m. it's that fine with you still it's a week come on 8 a.m. 8 p.m. once the morning once ok you will have to floss your teeth whenever you eat like immediately after you eat that's better than us we have to do it we should do it before you get to do it after you it makes more sense every time you eat and every time you drink something with carbs ok booster with me it's a week show me some hands come on this it's one week only dental floss one week one two and a half fish three for one week right every morning 8:00 a.m. every evening 8:00 p.m. every time you eat every time you drink something with carbs well wherever you are if you want to go see a toilet or a bathroom you can do that I don't cool you can't just use any floss and you can't just use whatever kind and length or what no you need to start counting carbs now there's a quote for you everybody can count the carbs right this is a quote from this morning Mike this was you you said this on the site you probably didn't even notice you said it this morning in your opening keynote everybody can count the cards ok so you start counting the carbs and for each 10 grams of carbs you use 5 centimeters of dental floss get me 5 5 centimeters how much is 5 centimeters exactly like I need to know exactly from me how much is 5 centimeters you're sure all right hold it right there I am above daughter I told you that that is 4.2 million that's not you know if you multiply that by 7 you get off your 2 units off that's like 2 units means 10 centimeters too little dental floss that can have devastating effect on your teeth yeah so five centimeters for each gram of carbs whenever you eat or drink something with carbs plus 8 a.m. in the morning plus 8 p.m. one week okay you're still with me good booster with me I want at least one - yeah I mean all of us here will type one you know we'll just add it to our daily list it's so in order to do this right of course you have to always take your dental floss pair of scissors something to measure 5 centimeters because you can't just you know you're telling me I shouldn't guesstimate you well you don't do that you get a measuring tape or whatever you need to make sure it's 5 or 10 or 15 or mmm yeah because you were guesstimating yeah we're almost done I need you for this one week to write this down every time you do this write down how many carbs take a picture write it down how many carbs write down how many centimeters that dental floss you were using okay and then you come and see me in a week and actually Maria I will be back in Copenhagen exactly 14 days you know that we have a meeting so I will check with you you will have to do it for two weeks and you know what I will do I will check if if you cheat or forget even once you know I can find out because if you forgot to write it down just once or wrote a wrong number or mm-hmm you know what I'll do is I take your roll of dental floss and I measure how much you've used and then I do the numbers and you know if they don't match you you yeah now here is the thing though you come back you bring me your notes we measure the amount of floss used we check with the notes we double-check everything you really tried really hard who thinks he or she can do this for a week 1 1 plus of course okay here's here's the sad thing about this the sad thing is no matter how hard you tried and even if you got it all right which probably didn't because he might not really measure it you might guess to MIT like me and sometimes you forget to write it down or you just don't do it at all or you don't do it right so even if you did it all right you know what's the best answer you're gonna get from me as your dentist do it better and now do it for month who is in it for months no one you know what the a month is only until the end of the year it's not far right let's say just for the end of this year over the holidays so we were talking about holidays you know you don't get a break over holidays just until the end of this year you're done by first of January who is in Murray I'm kind of counting on you know you kind of taken the joke away but here's what here's what you're in it doc is in it we got one guy going for a duck and now this is the thing you come back to me January 1st I do mm-hmm and I give you some slack you know if it's not 100 percent just 90 then we're still into you i guesstimate but you know what my best answer to you now do it for life thank you that that okay what a brilliant way to finish and what an amazing eight different talks and nine incredible speakers please please please join me in thinking I'm gonna read it just in case I forget but please thank me please join me in thanking felissa to start with okay yeah poor Louie where are you yeah good the wonderful Leon and Quinn are you Leon and creamy down the back there wonderful Sara Bruno Melanie and Bastian amazing amazing and keep that applause going for the incredible novo global patience relations I just they're amazing and just you know thank you so much for bringing us all together and for encouraging people to share their stories and to have a voice and I think the thing that is so interesting is we have just heard eight different stories that are all as diverse as as we are and this thing that I find so frustrating about diabetes is everybody loves to try and pigeonhole and make diabetes neat and tidy it is so messy and it's beautifully messy and we really heard about that today so thank you so so much we've got a bit of a meet-and-greet now so you will have a chance to have a chat with these incredible people if you've got lots of questions and I hope you do and you can go back and watch this on the live stream later on because it will be on the Novo Nordisk Facebook page thank you very very much I've had the easiest job in the world today and thank you for sharing your stories thanks a lot you

Channel: Novo Nordisk

Views: 11,276

Keywords: Novo Nordisk, health, diabetes, type 1, type 2, women's heath, corporate, pharmaceutical, pharma, company, Nutrition, T1D, Type 1 Diabetes, Mealtime

Id: TH0SSIlv1dQ

Length: 115min 27sec (6927 seconds)

Published: Mon Feb 11 2019