People in the DIY artificial pancreas community are talking about sensory changes in the way they experience their diabetes.
Some, like Thacher Hussain @Thachert1d, find that DIY looping causes them to regain their hypoglycaemia awareness.
“Feeling shaky at 84… means #Loop is keeping me in range enough that my body’s own hypo-awareness is readjusting to my goal range of 80-180 and (according to #DexcomClarity) only 6% under 80 in the last 30 days… #holyshit this is amazing”
Others like Tim Gunn @TwistaTim found that once they were looping they had less tolerance of blood glucose levels higher than normal range.
Before looping I used to be much more tolerant to a high BG, but with Looping, my body must have got used to me having such good control, when I have a High BG now…. I feel like crap.
For me, a sustained period of building trust using OpenAPS and Nightscout technology allowed me to finally let go of the thing that had haunted me for decades. Normal blood sugar levels feeling like ‘living on the edge of a hypo.’
Just looking at the ambulatory glucose profile (AGP) gives a clue as to how this normal (euglycaemic) glucose homeostasis re-establishes itself.
I am planning to write more about the psychological and behavioural aspects of this over the coming weeks. In the meantime, if you have experiences to share, I’d love to hear from you. Please leave a comment.
The children’s ward was a bright and colourful place, and the whole two week experience was actually ok, apart from my first hypo. My memories after 39 years are a little vague, but here is what I do remember…
One morning, just after I finished breakfast, in bounced Julie. Julie was young and full of a tingly kind of energy, probably in her early 20s. She oozed warmth and fun and she introduced herself as my ‘diabetic sister’. I thought all my Christmases had come at once. Diabetes seemed like one big adventure with Julie.
There were rules and they seemed easy enough to follow (in hospital at least!). We had ‘portions’ of carbohydrate and a book to show us what things equalled a portion. One slice of bread, one banana, one potato. I had a food plan. Three portions for breakfast, three portions for lunch and three portions for dinner. One portion for morning tea, afternoon tea and supper. 3-1-3-1-3-1 made me think of a piano scale.
The book with the ‘portions’ in it I just called ‘the red book.’ It explained everything I wanted to know about diabetes. It was easy to read and practical.
The best thing about ‘the red book’ was the page with the circuit diagram of the technology that scientists were busy working on. The Artificial Pancreas. The Closed Loop. I loved that diagram, and once diabetes got hard after I left hospital, I turned to that page a lot. Around ten years later, when I was diagnosed with proliferative retinopathy, and told I had a 50% chance of going blind without laser therapy, I remember trying to find the book again, but it had been thrown out.
The other good thing about the book was a list I called the ‘forbidden food list’. (I can’t actually remember what it was called, but at one stage I actually did have a list with the title, ‘forbidden food’.) It had things I could buy at my school tuckshop in it with the equivalent portions listed. One Dracula ice cream equalled 1.5 portions.
I had one injection a day in the morning. It was pork insulin. Hypo signs were intense and easy to recognise, which was lucky, because we had no BG meter, just urine testing tablets.
My mum came to see me when she could. She learned to inject an orange first, then me. Like others, I found the injection by my poor mother was the only one that really ever hurt.
One day a very good looking boy about my age was wheeled into the ward and placed in the room I had been in for the first two days while I was on the drip. We were the two oldest kids in the ward. He called out at night, moaning as though he was in pain, and sometimes he called out during the day too. There was always someone sitting with him, next to his bed. Almost always his parents. I used to skulk past trying to get a look at him, and once I caught his eye. I felt so sorry for him, alone in there with all those adults, but what could I do? One day when my ‘diabetic sister’ came to visit I asked her about him and she whispered that he had a brain tumour.
Every day a lovely paediatrician came to see me. He was a round man with a kind, smiling face. His mother had had type 1 diabetes and he used to give her her injections apparently.
Another memory from those two weeks was that I was super anxious at missing two weeks of school. I knew there was a Maths test planned for the day I got back. I panicked and figured I would fail the test as I’d miss so much work. I had to rely on the textbook. It was hard going, working through the worked examples and extremely detailed explanations for everything, and I had to go over pages a few times to make sense out of them. I showed up that first day back at school, carefully measured milk in my drink bottle (one portion), urine test tablets and test tube in my bag, sat the Maths test and was completely gobsmacked to get a score of 100%.
It was the only time in my life I got 100% in a test and I wish I’d realised the significance, the ‘take home message’. Read the documentation. Find the answers yourself and check them. There was no internet then. The only information we had was from doctors and the quarterly magazine from the diabetes association, which was peppered with dire warnings, people who were older than me, and anxiety-inducing outcome data that I didn’t realise applied to the previous generation. I read every word.
It was my second month of high school, 1980. I was 12. My best friend Linda had gone to a different school and I was trying to find my way at a place known by the students who went there as ‘Spike’s Prison Camp’.
The bursting bladder was the first thing I noticed. At first I just held it in during class and bolted to the toilets in the hourly between-class breaks. I should have twigged immediately that something was wrong, but 12 year old kids don’t think of peeing as a medical issue. It got worse and I was embarrassed putting up my hand to leave class to go to the loo within the hour. I guess at that age everyone just assumed I’d got my period and also was coming down with a touch of anorexia, given that I was becoming rapidly skeletal.
My mother took me to the local GP around then to see why I was losing weight. He gave me antibiotics and said probably a virus. (Fail, fail)
I got thinner and thirstier and spent afternoons lying dazed in sick bay as the fumes of isopropyl alcohol and methanol from the Roneo machine wafted past me. I remember seeing a vase of dying flowers and being desperate to rip the flowers out and drink the murky liquid. I had dreams about swimming in a large pool of coca-cola.
My mother took me to the local GP again and he shrugged, saying it was some kind of mystery virus, and sent me home.
About three weeks out from the first hint of bursting bladder I started to vomit. This lead my mother to resort to one final appointment with the local GP, who suggested they book me in for a lumbar puncture. Bizarre that 1, I never thought to mention to him that I was thirsty and peeing like a fountain, and 2, he never thought to ask me. Mental note – kids don’t always volunteer information about their bodily functions.
It was almost Easter. My father was going away on a fishing trip. He asked me to hold the fishing reel for him so that he could wind on the line but I wasn’t able to hold it up. I didn’t have the strength in my arm by that point. I remember him getting cranky. Frustrated. It was a small ask. Why wasn’t I doing it?
By Easter Saturday I had taken to my bed for most of the day, and my mother started doing what any loving mother would. Sitting by my bedside and feeding me Lucozade when I called out that I was thirsty.
Easter Saturday night I said goodnight to my mother, following it with the quiet announcement, “I think I’m dying.” Two things occurred to me in rapid succession. One. This was melodramatic. Two. The disturbing realisation that I actually did believe I was dying. I was feeling really anxious. But it was just a bad virus. I remember my heart was beating rapidly and my breathing was shallow. I was vomiting periodically.
I went to bed.
When I woke up on Easter Sunday I was almost completely blind. My mother had placed my easter eggs at the foot of my bed and I remember seeing them out of tiny peepholes in the centre of my vision. I stumbled out of my bedroom and asked her to take me straight to the doctor. It did not occur to me to tell her I was almost blind.
When we got to the after hours doctors’ surgery I was too weak to get out of the car. I was in my dressing gown and pyjamas and my mother half-carried me in, propping me up. There was a long queue of people standing in a line to see the doctor. All the seats were taken. I remember no one moving for what seemed like a very long time. Then a man near the front of the queue came up to me and my mother and said we could take his place.
The doctor took one look at me and asked me to pee in a jar. Somehow I managed to get to the little toilet adjacent to the room. A minute after I got back to my seat he dipped the test strip into the jar of wee and announced, “You have diabetes.’
My mother cried. I felt a huge sigh of relief and had a vague memory of seeing a child inject herself with a syringe on TV. It didn’t bother me. I was so relieved to know there was a reason behind this thing and that it could be treated. The doctor was calm and told my mother to take me straight to hospital.
The after hours GP had phoned ahead and I was taken straight in on a trolley. I will never forget the explosion of joy and profound relief as the life-force from the IV filled my body. Cell by cell I was being plumped up again with the correct amount and type of fluid. It felt like every cell in my body was tingling. It was a dreamy pleasure and nothing else mattered. I think the drip stayed in for a couple of days.
I was put in a room by myself for those two days. Nil by mouth. One morning I was fed my first meal which was scratchy, bacon and toast. Then I was taken into one of the large multi-bed rooms in the brightly lit and coloured Children’s ward where I would remain for the next two weeks.
In response to yesterday’s FDA warning about off-label use of automated insulin delivery systems, the core developers of DIY systems AndroidAPS, Loop and OpenAPS shined through once more.
Not only are they reminding all users of DIY systems to report adverse events, but they are working on yet another innovation that does not exist: A way for people to report adverse events quickly, easily and in a way that maintains their privacy.
Just after I started using the DIY hybrid closed loop system, OpenAPS, for my type 1 diabetes, a lot of old memories started bubbling to the surface. Memories of my life with diabetes. I guess possibly these were what is referred to as ‘suppressed memories’, but it seems a bit melodramatic to say so.
One of the earliest memories was about my first hypo.
I was in hospital for two weeks for stabilisation after my diabetes was diagnosed. On my own. Apart from my mother’s visits. But she had three other children to manage at home.
In a white gown tied at the back, nil by mouth, for the first few days while I was hooked up to a drip. Then one morning the drip came out and I had my first shot of insulin.
The hypo seemed to come out of nowhere. It was night time on the second or third day of insulin injections and I was 12 years old.
I started shaking and sweating.. My heart pounded in my chest and I was confused. It was like a rug had been pulled out from under me and I felt like I was falling through air.
Was this what I’d been reading about in my “How to Manage Diabetes” book…hypoglycemia?
It was hard to find my voice. I was not used to speaking up. Eventually I called for the nurse. I waited… and waited … and eventually the nurse came. “I think I need to eat some barley sugar” I said. “I think I’m having a hypo.”
The nurse told me to wait. She wanted to clear this with my paediatrician first. This was 1980 so there was no blood glucose meter.
I did what I was told. I waited for what felt like a very long time, shaking and sweating and thinking “I really should be eating some barley sugar.” The nurse couldn’t reach the doctor. The packet of barley sugars my mother had left with me were in a drawer next to me. Eventually the nurse returned and told me I could eat some barley sugar.
Eventually my body calmed and I started thinking clearly again.
I’m planning to trial AndroidAPS in the coming weeks. It’s exciting and intimidating. And it’s made me take stock of what I’ve loved about the iPhone/OpenAPS combination I’ve been using for the past eight months.
Doing things quickly on the go, without too much thought, is the way I want to run my diabetes, and iOS Shortcuts are perfect for this kind of interaction. Just a swipe and a tap or ‘Hey Siri’ to activate them.
Here are the Shortcuts I’ve been using with the DIY hybrid closed loop ‘artificial pancreas’ system, OpenAPS. (note, colours here are iOS 12 Colour palette in iOS 13 is muted)
See end of this page for examples of how I’ve set these up.
One of the great things about OpenAPS is that you can configure it to run Autotune automatically every night. Autotune iteratively calculates what it thinks your basals, ISF (insulin sensitivity factor) and C:I (carb to insulin ratio) should be, and uses these values in its predictions and dosing. It works best if it has good data. The last thing I feel like doing when I’m having a hypo is entering hypo recovery carbs into the system. So this Shortcut does it for me. It also temporarily increases my BG target to help me recover from the hypo.
If I’m eating a low carb, minimal protein meal like veggie stir fry with tofu (no I’m not vegan!) I still seem to need a boost of insulin. This Shortcut feeds into Nightscout to let the system know to treat me as though I’ve just had 8g carbs.
I love this one. If I notice my BGs have been sitting a bit higher than I’d like them, this will usually bring them into line. My usual BG target is 5.5mmol/L (100mg/dl). This shortcut sets it to approximately 4.5mmol/L (80mg/dl) for two hours. It’s great for stressful mornings at work, mornings when I don’t exercise, insulin resistance due to hormones, and at workshops or conferences where there’s a lot of sitting around. It’s also useful when I’m coming down with a virus or cold and can see the insulin resistance starting. OpenAPS catches up with this decreased sensitivity really quickly, but using a lower BG target for a while helps to keep BGs in range early.
This sets a higher BG target for two hours which stops my BGs going low during exercise. I walk for an hour most mornings and activate this Shortcut as soon as I wake up. It works best for me when I activate it an hour before starting exercise as it prevents or minimises insulin-stacking.
Gets the insulin going before meals (when I remember to use it!) by setting a lower temp BG target (4.4mmol/L, 80mg/dl) for one hour.
A brilliant, quick way to end one of the temp targets I’ve set up. I use it when I can see my BGs have come down quicker than expected after activating the 4.5 for two hours Shortcut or at the end of exercise if my BGs are at the high end of my target range.
Tells the Nightscout portal I’ve had 5g carbs.
These buttons create entries in Nightscout to make keeping track of sensor and pump site changes super easy.
These carb Shortcut buttons, for pre-set amounts, tell Nightscout roughly how many carbs I’m about to eat.
Tapping the darker blue Carbs button opens the screen below for custom carb entry. (Thank you to Jarred Yaw for drawing my attention to this and Scott Leibrand for the screenshots on Twitter)
When using these carb shortcuts I usually just leave OpenAPS to sort out the insulin via high temp basals. Most people using OpenAPS use Supermicroboluses (SMBs) for this but I haven’t enabled this feature yet due to having tiny insulin requirements.
I also like having the option to enter meal boluses through the pump’s bolus wizard, and often use this instead of using the Carb shortcuts. Either entering a bolus for the entire meal if it’s fast-acting carbs, or for a fraction of it up front for other meals, leaving the high temp basals of OpenAPS to do the rest. This mimics square wave or dual wave boluses but is even smarter, as it incorporates responsive carb absorption observations and calculations into its algorithm, including unannounced meals (UAM). When using the pump’s bolus wizard for bolusing, both the carbs and insulin bolused are automatically uploaded to the OpenAPS system.
A few months ago I met a 96 year-old man in my dentist’s waiting room. I told him I had an artificial pancreas.
I was ecstatic – showing my OpenAPS rig to complete strangers at the time, expecting them to be as interested and thrilled as I was about this monumental development. Most people looked a bit puzzled. Some remembered hearing or reading something about type 1 diabetes and proceeded to ask me if I was one of those people who had to give myself injections.
The man in the waiting room was quiet for a long time. He shook his head. He was quiet again. I thought I’d been too forward and maybe what I’d said was unfathomable to him.
Then he told me that a boy in the year behind him at primary school, when he was in year six, had died of diabetes, and a boy the year ahead of him with diabetes had not reached his twenties.
I was shocked. Since my own diagnosis in 1980, I’d assumed the discovery of insulin in 1921 meant that the era of children regularly dying from diabetes was a bygone era, a chapter in ancient medical text books (and developing countries, and America if you don’t have health insurance, but that’s another story).
I did the maths. The man in the dentist’s waiting room was born in 1922, the year that insulin became available for treating type 1 diabetes. He would have been in year six in 1932. So the first boy had died around 10 years after the discovery of insulin and the boy who didn’t make it into his twenties maybe started using insulin in the early 1930s.
It was humbling and profound to realise that in the span of one living human’s life, the world had changed from one in which type 1 diabetes equalled death to one where hybrid closed looping technology had been developed, and a healthy, long life could be the norm.
It also made me wonder what it was like to live with type 1 diabetes in Australia during those early years of insulin. Why did people do so poorly?
I stumbled upon Vicky Bowden’s story of John Cook in Mackay’s Daily Mercury, 10 May 2018. It provided a lot of the answers:
“Even with the advent of insulin the treatment was fraught with danger, as the potency of the drug was variable, leading to complications in many patients. It was also expensive and availability was sometimes patchy.”
According to Lance Macaulay’s article in Australian Biochemist (2002) the high cost of insulin, and issues with availability, led many families to rely on dietary restriction to minimise the amount of insulin required, especially during the Great Depression of the 1930s.
Lance Macaulay describes his own father, Russ, who was diagnosed in 1930 at age three, remaining thin and physically wasted on the restrictive diet of the times, until he visited a new clinic at age 14, was placed on a regular diet and thrived.
John Cook developed diabetes in 1925 at age 13, two years after CSL began producing insulin in Australia.
John followed a strictly controlled and documented diet and measured the sugar in his urine four times a day. He also weighed himself on a daily basis to gauge how well the insulin treatment was working.
When he was fourteen years old, he developed “pain in my side” and despite the local doctor assuring him it was nothing to worry about, he was later taken to hospital by ambulance and remained there for two and a half months.
By the end of his hospital stay, fourteen-year-old John had put on “1/4 pound”. His diaries show that he struggled in hospital with the slow passing of time, and found the days without visitors hard to bear. His father’s diaries note that he was becoming depressed. They brought him home.
His parents embraced natural health practices and became interested in Christian Science, a movement that was growing in popularity at the time. Christian Science founder, Mary Baker Eddy argued in her 1875 book, Science and Health, that “sickness is an allusion that can be corrected by prayer alone.”
John persuaded his mother to take him to see Christian Science practitioners in Brisbane in March 1929. His parents would only agree to the trip if he promised to continue taking his insulin. He agreed, but he wanted to stop.
John Cook had kept a detailed diary from the age of eleven. The entry from 7 March, 1929, indicates that he was told he could not be healed unless he gave up his insulin. According to Vicky Bowden, his diaries note that his insulin doses were gradually reduced over the following weeks.
The last word John wrote in his diary is “insulin”, on 29 March, 1929. The final words in his diary are his mother’s.
John Cook died at 7pm on 31 March 1929 at seventeen years of age, after becoming ill early on the morning of 30 March.
What captured my attention most of all in Vicky Bowden’s Daily Mercury article is the following description of John:
“John spent a lot of time designing new machines and redesigning old ones. His drawing book shows all manner of engines and devices all neatly sketched and labelled in his hand.”
And from one of the eulogies written about him:
“John was a bright, cheery lad and was exceptionally clever, particularly in mechanical lines. Although only very young, he could assemble the parts of motor cars with the greatest ease, and wireless work of the most difficult nature was only a mere detail to him.”
“He could discuss most intricate questions and work with the most learned, and possessed the most genial character of profound meekness.”
John just needed access to the internet, and to be born sixty years later.
I hope one day to visit Greenmount Homestead and look at John’s diagrams. I’m sure you all know what I am looking for…
Sincere thanks to Vicky Bowden, chair of the Friends of Greenmount Homestead, for providing digital photographs and information to me about the life of John Cook.
I started writing this with an upbeat ending in mind. The truth is, it’s a very sad story. It reminds me of the great luck we have to be alive at this point in history. It reminds me to be grateful, every day. And it reminds me of how much is left to do in countries and amongst people who are not as fortunate as we are.