Type 1 diabetes and the deluge
“In a sense it’s similar to all people with type 1 diabetes having adventures across the world but in this case we had no control, no idea what to expect. It was very stressful indeed.”
During the recent Queensland floods John Inglis and his family spent several days isolated from the rest of Brisbane in the western suburb of Karana Downs, without power or phone. This is no different from many other families except that two of John’s adult children have Type 1 Diabetes.
John describes Karana Downs as Brisbane’s last suburb before Ipswich. It sits below Mount Crosby on a “horse-shoe” loop of the Brisbane River, about 45 minutes downstream by road from Wivenhoe Dam. The suburb was developed after the 1974 flood and all construction had to be above the last flood level, which meant that the Inglis home stayed dry. It was their isolation that led to other potentially serious problems.
The family never expected their town to be overwhelmed again in this way. The Dam was built as a flood mitigation initiative but questions are now being asked about its role in the devastating 2011 floods.
John’s children Laura and Daniel are in their early twenties and have both had type 1 diabetes since they were three years old. From childhood they have both managed their diabetes quite independently and now as young adults, John and his wife Mary Anne play a very minor role. The floods changed this.
When the flood crisis began John acted quickly to preserve food and insulin. As power was cut off, John purchased ice from the local shop to keep the fridge and freezer relatively cool.
Together with Laura food requirements were closely monitored to ensure the risk of a diabetes-related drama occurring was minimised. Daniel’s situation however was another matter.
At 22, Daniel is described by his father as a very responsible lad. He was staying with friends at Kholo, a rural area a few kilometres upstream from Karana Downs. Having also lost power, communication and road access, Daniel’s parents had no contact with him for almost two tense days.
Once the waters had receded enough to allow access they were dismayed to find that their son had begun to suffer from a gastro complaint that was causing him to vomit. Those with experience of type 1 diabetes will know how quickly that type of situation can become life-threatening. It was agreed that Daniel should return home with his parents to allow them to keep a close eye on him.
“He’s a grown man now and very independent, but I think he was glad that we arrived to provide support.”
John is not sure if the cause of the gastro was the tank water he was drinking or the lack of adequate refrigeration. Either way it was better for the parents with their years of experience with type 1 diabetes to be close at hand.
“You’ve got to be very careful with insulin. At the best of times it’s important to be mindful of how someone is responding to the insulin, what’s happening with their BGL, what carbs they’re eating and how much, as well as any emotional influences,” says John.
“With the stress of being isolated by the flood and not knowing when we would get power again, to be honest I realised that I had become quite affected myself.”
This story has a happy ending, where sadly many other stories from Queensland do not.
With caution and care, Daniel recovered from his gastro within two days and stabilised his levels. Laura unsettled her parents with a hypo on Friday after the power came back on but they were able to manage it quickly.
For John it was the many unknowns that made the situation so difficult. “I had heard that the water levels were expected to stay up for a few days and I didn’t know whether we could continue to cope on our own.”
In the end he called ABC radio to point out that although their isolated suburb was trying to be as self-sufficient as possible, they were worried that the authorities were not aware of the difficulties they faced. Eventually a helicopter dropped in supplies and access to Brisbane reopened on Friday at midday.
When JDRF spoke with John, Daniel was back with his friends, and type 1 diabetes was under control once again.
The events of the past weeks have showed that we are all vulnerable to extreme weather, but those with type 1 diabetes more than most. It reminds us of the ongoing need for awareness of type 1 diabetes as well as the urgent need for medical research to improve management and ultimately find a cure for this disease.
Do you know someone with type 1 diabetes who has been affected by the recent floods?
How would your family cope if you were cut off?
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it was a very inspiring story i don't know what i would do in that situation. My grand daughter is type 1 and i know how much you have to keep a close eye on them, Well done John
its amazing this story has ended up on here because when the floods were in full swing we were thinking of the parents in our situation with kids with type 1 and wondering how they were going to cope and what we would do if it was us, it has turned out for the best as we now have a plan in place if this situation occured here and we were without power etc for a prolonged period or isolated for any reason, better to be prepared!
We were isolated by the floods and I was just glad that I got home before the Centenary Bridge was cut off. Georgia (T1) was at home with her younger sister when this happened but she was pretty calm, I was the one freaking out (being the main carer as she is only 14).
I always make sure I have enough insulin and food in the house and we have a storm kit that I had set up quite some time ago. To be honest T1 does force you to be more organised, you have to plan for the worst just in case… If the power had gone off I would have evacuated no question. The fridge would stay cold for 3 days providing we didn't open it, but thats unfeasible with 2 teenagers in the house.
Also Diabetes Australia has a check list for evacuations which is a really handy tool, there were things on that list that even I hadn't thought of.
Diabetics can lead a challenging and exciting life if you let them.
Oh grow up, this sort of media attention gives diabetics a bad name, just because you have an insulin dependent adult diabetic in the house you have to panic and make this an issue. Get real, your kids are in their twenties and are adults and have been diabetic for the last 17 or so years and if they can’t care for themselves well they should, not saving that a little bit of support would go astray. Especially if you’re sick, reduce but don’t stop having your insulin as your blood level will be up any away. Surely you have a decent supply of food and insulin doesn’t need to be kept near frozen, it can last .. And if its heat damaged just use more and monitor more. Yes stress can play an important part and will raise blood sugars, as its dumps adrenalin into the blood stream. Next time get a pen and paper and decide how you’re going to manage this, really if properly planned it’s not an issue. And it shouldn’t be .
What an extraordinary attitude Shepherd has. Of course the main theme of this story is that by PLANNING ahead diabetics should be fine in an emergency. But how many of us sometimes only have 1 insulin vial left in the fridge at times etc. Sometimes a little help doesn't go astray when you are sick and your cognitive function is impaired. It is surprising how poor your judgment can get. Of course parents get emotional about their children even when their children aare adults. Maybe it is Shepherd that should grow up.
I agree also being type 1 – heat won't hurt the insulin to make it unusable, over a period of time you would just need to take more of it – I leave some in my car in Queensland so how hot would that get!!
Don't panic – get better informed.
Yes being cut off in the Flooding can be challenging, we were cut off twice as the first time was just before Xmas and we were due to go on holidays only to get flooded in and have to cancel the holiday, worried that we did not have enough food ,My sone is type 1, we had a truck take us out through approx a metre of water to get into town so as we could get enough supplies as we were unsure of how long we would be stuck, we live 1/2 hr from our closest town. We did get low on food supplies as we ended up being stuck for about 8days. Then 10days later we again endured another flood, this one only kept us in for 5 days but it hit us so suddenly that we only just got by on what food we had, especially when my son has to have fruits & vegies and his carbs.. but we got through Ok and he was quiet good in his sugar levels in this time, luckly we had enough insulin to last us probably 6 months as I like to know that there is enough just in case something happens. We were also lucky to have our power supply.
So sorry to hear your attitude Shepherd. I do appreciate hearing about real life situations to help arm myself with knowledge. I am a mum of a 17 year old son who was diagnosed with Diabetes 1 and Coeliac Disease only 3 months go. He is definitely a remarkable young man who has stabilised his diabetes himself already, is back exercising and has his diet under control with the Coeliac. Luckily we were not affected by the floods but it did prompt us to talk about 'what if we were in trouble' and food etc. I am definitely a 'get on with it' type of person, I am also a volunteer in the aged care industry and you truly need to respect that some people have the ability to cope with unknown situations better than others. We need to be sympathetic towards those who do require more help. John was not looking for sympathy, just making us aware of his extremely difficult situation. I would have been stressed too John and well done to you and your wife for offering your son the support he needed – that's what makes a great family!
How unpleasant to read Shepherds comment, I am mother to 3 kids my 6 year old is type 1, it doesn't matter if your children are 2 or 22 you still love them and worry about them. My thoughts were with those trapped in the floods with a diabetic in the mix, it would be bad enough worrying about rising flood waters without the added stress of remembering BGL's and counting carbs. Well done to all of you that did it !
Well said Renee. There has just been 6 recent deaths due to Type1 diabetes two of them were over 20. Age is irrelevant, this is a dangerous disease and as a mum to a 9 year old with Type1, I will always be concerned for her.
My 10 year old son is a Type 1 Diabetic. We were also badly affected here in Karalee and were cut off for many days with no refrigeration. I think living in Queensland you need to always be mindful of what could be ahead of you with any weather event. The minute I saw the situation in Toowoomba I went to the shops, bought lots of fresh fruit and vegies (which I knew would last at least a few days without a refrigerator), lots of low GI food and lots of Jelly Beans!! I had a heap of insulin in the fridge, which lots of friends with generators offered to mind (I now have my own generator!). I think, not just with diabetes, but with any life threatening disease, being cuf off from quick medical assistance is always a worry and I understand why John would have been extra worried, with his son suffering from gastro. You can only do your best to be as prepared as you can and have a good back up plan ready!
i am 23 and type 1. if i were in the situation ur children were in i would be managing myself. the only time u cant control what your doing is if you have a hypo.. being in your 20's though is a good age because you can tell fairly early that your having or heading towards a hypo to do something about it.. what are your kids going to do when your not there anymore? they have lived with this prob for many years n by now they should be right to take precautions or act as needed..you shouldnt be waiting on your kids hand and foot and controlling things for them because they will end up depending on your help and support, and it is extra stress on you aswell.. if you can learn to stop worrying about it and get them to start focusing on what to do in a situation when they are sick or high or low, then it will help them in the long run.ive come across many problems in my years and have always supported it myself so i know whats happening to me and how to fix it… its the best way otherwise your doom'ing your kids for the long road ahead that you arent by their side. think about it..
Great to read your story John and know that everything turned out fine in the end for your family – what a wonderful family you are – being there for your children no matter how old they are and especially when you are needed most due to a medical condition – as they can deteriorate so very very quickly!!!! I am a mum of twin boys with Type 1 Diabetes. It is definately more of a worry for people with medically reliant children in a stressful situation – not only do you have to worry about the safety of physically fit people in these situations – you have to ensure that you have all the medical supplies you need for the others. I am definately a worrier but not without reason. Sometimes my children come down so fast they don't always know when they are low until they are very low and with gastro or vomiting it is very worrying just trying to keep their BGL over 4mmol. I always make sure I have plenty on long use-by-date carbs in the cupboard but when sickness arises it's a whole new ball game. Thank goodness we have always got through it – sometimes needing hospital but being isolated due to mother nature and not being able to get medical assistance would be ever so frightening. Your story was inspirational and informs other carers and Type 1 diabetic children / adults to be as prepared as possible in case of this very scary situation ever happening to them.
My daughter's 14 and no matter how old she is I will always worry about her. Shepherds remards were fairly harsh. I too like many others wondered how other T1's were getting along during the floods. I think John was also telling us that no matter how prepared you think you are sometimes things can still go wrong. Well done to all those who had medical issues to deal with too during the floods….and now with the cyclone too.
no sweetie… YOU need to be better informed…
woah !!!!!! … Shepard has really stolen the limelight here !!!!.
after 17 years of the illness there is there room for such complacency or lack of knowledge.
You say ……. Especially if you’re sick, reduce but don’t stop having your insulin as your blood level will be up any away.
…… for some diabteics illness lowers BGLs…
You say …… Surely you have a decent supply of food
… surely you must know that a diabetic without food for many days is a fatal situation ???!!!…
You say …. and insulin doesn’t need to be kept near frozen, it can last .And if its heat damaged just use more and monitor more.
…. how slack are you after 17 years.
YOU say … Yes stress can play an important part and will raise blood sugars, as its dumps adrenalin into the blood stream.
….. you are not entirely well informed anymore …Stress can also lower BGLS to a dangerous state.
The focus of the QUEENSLAND STORY is very important…
The general community does not understand the intricacies of diabetes….
The illness is NOT just about high sugar levels and insulin…!!!!
Diabetics without food is a dangerous situation.
have you ever been 3 days without food ????..
for a diabetic .. ……food,…. !!!!!!! …..and that means, proper food …… is just as importantly vital as insulin.
Last time i had gastro i ended up DKA and spent 5 nights in hospital and that was AFTER ringing the flying Dr's for advice! I'm not sure how T1's fared in Mission beach, Cardwell or Tully. The only safe option woul have been to evacuate. Becoming an evacuee has its own challenges and if you have to do it in a hurry you do have to start relying on people surrounding you for support. Planning helps but sometimes you can't plan for everything.
I have had type1 diabetes for almost 32 years now. I cant not imagine what they were going through. I am a Queenslander, and have found it difficult just being there let alone the floods when I lived there. Good on you John you are a saint. Take care Kayleen SA
Thank you to those that have participated in this conversation. JDRF acknowledges there will always be a variety of views on any issue from amongst the type 1 diabetes community.
To clarify, one key point from this article was that John's son Daniel was suffering from an unidentified gastro complaint where he was not able to eat or keep food down. Most would agree that being isolated from medical assistance in this circumstance with type 1 diabetes is a potential dangerous scenario.
Thanks everyone for sharing your thoughts on this issue.
Hi everyone I’m back, my response is broken into a few posts, No : 1response
I will start my saying hi to John, Kathleen and Laura and Daniel, the story of the Brisbane flood and being house bound has caused a great and interesting debate and I think there’s something we can all take from this somewhat passionate discussion coming from both sides of the fence. I do regret I didn’t show any compassion for John, Kathleen and Laura and Daniel experiencing this terrible flood event.
I think I can straighten out some issue here, and I think you will begin to understand where I am coming from.
(see next post No 2)
continued Post No 2
All my life I’ve been told I can’t, not by my immediate family but outsiders people who think they know better and since then I have pushed the boundaries to say ,Yes I can. And so far I have managed to lead a successful and rewarding life because of this drive. I was diagnosed in 1981, aged 12 weighting at a tiny 23 kilos in a small country town where this diagnosed meant to most of the narrow minded villagers . She can’t ride a horse any more, you’re not allowed to play with her any more, she shouldn’t go to school, ( yes they tried to prevent me from attending school ) she’s going to die, she won’t be able to hold down a job and will be a burden to the community and family until she dies a horrible death. And the coming in at No1… She did it to herself; she ate too much sugar that’s what caused it! Self inflicted, she’s a naughty, naught girl. (see post no 3)
Post No: 3 – This was further acerbated by Julia Roberts’s portrait of an insulin diabetic in the movie Steel Magnolias; I personally hated it as it didn’t paint nice future at all. The outcome of this terribly portrayal was, her inability to self manage, crazy hypo events, No babies otherwise you then die of a horrible death.
While I rose above this, it’s still there in some peoples mind. I even found this in the medical profession after the birth of my second daughter, being told I was a BAD diabetic since I requested an increase to my insulin. While the other insulin dependent diabetic on the ward was GOOD because she didn’t complain about her elevated blood sugar, which I pointed this out to the nurse. (see post no 4)
continued Post no 4
For years I didn’t tell my work colleague I was a diabetic, for the simple reason, if and when I did their whole attitude changed. I became a sickly being in their eyes. I feel this condition is cruel and this is perpetuated by negative publicity and the good stories don’t get the light of day, as they should.
I would have been entirely supportive if the flood story in Brisbane, if it had a greater POSITIVE feel.
If the tone of the story had a positive feel it would have been great …During the flood we assisted our daughter manage her diabetics by …. we also had a difficult time when our son also a diabetic, whom previously staying with friends had contracted serious stomach upset by drinking contaminated water. We did this…. and that….. and this worked really well for us. We were low on food so …. Both Laura and Daniel knew what to do and we were there to assist them when need. It was hard and truly emotional experience being confronted with the flooding and we were very proud of the way our adult children managed. The Positive rewrite sounds wonderful! (see post no 5)
continued post no 5 In addition Min stated
•In various posts you said 3 days without food? Who said without food? Everyday citizens are advised by the Australian government to have emergency food supplies that’s enough food to last for 14 days, while my food supplies don’t stretch that far, (my pantry not big enough) every diabetic should have lasting food stocks, and have an emergency plan.
•Hypo management comes with the territory, as you know we tend to hypo, more than hyper. Know your symptoms and carry supplies with you. (Sultana’s work really well, they can stay in the car without expiring, able to handle both hot and cold weather I carry sultanas in the glove box, a picnic basket containing sugar and sultanas is godsend and a must.
•Yes Stress can lower blood sugar when there is no glucose reservoir within the liver.. too low for too long and running on adrenalin for too long, basic hypo management must be undertaken . I would also question if you are hyping for a prolonged period. see post no 6
Post no 6 continued
.• Insulin is a must, if your insulin dependent. You can physically stop eating for a period of time (prior to surgery) but you still require a boler does of insulin, during this period to maintain a level blood sugar. I’m not slack just realistic Hot insulin’s better than no insulin. I use a pen I have it with me all day and night and the pen last a week in my handbag , with no loss of control, in the unfortunate even it get hot, I toss it.
•The 17 years was in reference to John’s children Laura and Daniel whom were diagnosed at 3 years of age and not my diabetic history. You wrote: after 17 years of the illness there is there room for such complacency or lack of knowledge. I agree totally, but we must concede Daniel was ill, but had managed up until that point.
continued see post no 7
Continued no 7 of 7
• For parents with young diabetic children , I can’t imagine what you’re going through , having now adult children myself I can understand the challenges associated with raising a child. From a diabetic on the opposite side of the fence, teach them the skills to self manage and be prepared to step in and pick up the pieces, but give them control back again. This I feel is the greatest skill you can teach them, self reliance. In additional make a game out of guess blood sugar levels, that way if they can’t test they can feel what their blood sugar is doing.
• On a totally different topic: if you’re going into hospital and if physically able, ask for permission to self manage your insulin and blood sugar, only a dim witted doctor will refuse.
Stay safe and keep well.
Hi B Noble,
Not sure I would continue to use your insulin if it’s been in the car and hot car temperatures can get extremely hot in excess of 60 degrees or more, I would personally throw it away and get a fresh vial. Keeping insulin at or around body temperature is ok, any hotter and I would dice it. Your health not worth risking by taking it.
Keep safe and well
by the way I do i like your .. Dont panic get better informed sign off
objectively ….. So long as there is a POSITIVE viewpoint concerning the successful MANAGEMeNT of insulin……. there will NEVER be an absolute resolve toward FINDING A CURE….
subjectively ……. community perceptions and attidudes have changed over the past 15 years … perhaps yes …..
…… now the perception is … well, they are are only diabetic, they can manage with their insulin, …..they are not really sick …
.. the truth is that the general community cannot face the the reality of the illness, because the illness is directly centred around the highly sensitive issue of … FOOD INTAKE………
… this means that people would have to face the fear of eating habits, weight problems, medical issues, along with the consequences of the production and marketing and the commercial profits of unhealthy food products.
My 12yr old son has had type 1 for 8 yrs. We live in the Kennedy Valley out the back of Cardwell and were isolated by flood waters after Yasi for 3 days. Every year we get flooded in at least twice but this time we will also be without electricity for possibly 4 weeks. We have always had a generator, always have a stock of insulin, syringes, carbs and everything else he may need. We've been vigilant with supplies from the start and always discussed what foods he should eat and how much insulin he should have. About 3 months ago he started self caring, with our guidance, as he nows travels 35kms to high school . Doing this has given him awareness of how to manage diabetes in a more controlled way than I ever did. Yeah, it gets bloody hot up here too and we keep some insulin in his diabetic bag all the time for travelling but have never had a problem with it as long as we change it every couple of months. We leave for a 3 week trip to Bali next week so that will be another learning curve for all of our family. I want my son to be independant and this is the first step.
Hello All
My name is Laura Jayne Inglis and as you may have figured out, I am John Inglis' daughter. Firstly, thanks to all of you who have been supportive and compassionate to my Dad and my family in this situation. Secondly, let me tell you how sad, angry, frustrated, and shocked I was by some of the comments.
The situation we faced was VERY stressful and while we were safe from the actual water itself (i.e. our house was not in danger of being flooded) there were many other issues we faced that caused us all to feel stressed and anxious.
To those of you who wondered why we didn't have enough food, for your information before we were stuck in Karana Downs we actually went out and bought A LOT of food. However, we did not realise that the power would be cut off for a couple of days so almost all the food we ate was spoiled. This includes the necessities like milk, juice, bread and some of the fruit – all of which are vital to people who have diabetes. The local food store ran out of this necessities at about midday on Tuesday – we were stranded until Friday afternoon. We also had very limited reception and because the power was cut off, our mobile phones were either flat or VERY low on battery – this meant that had there been a situation where we needed to call an ambulance, it would have been very difficult to do so. Even our landline was cut off for one day and even before this, it was very difficult to make calls because the lines were so busy! IN addition, as we were cut off from power we had very little communication with the 'outside world'; although we did have a portable/battery operated radio, we were not able to have this on all the time because we had to save the batter. AND, even when we did have it on, they never even mentioned the situation in Karana Downs, until my Dad rang one day and told them about the situation!!
Now for those of you who have diabetes, you should know that your emotional/mental/psychological state CAN affect your diabetes. I have had diabetes for almost 18 years and because of the help and guidance from my family, especially my parents, I have had very good control. However, even when you have the best control, your emotions can cause everything to do hay wire; this was the case for the floods. I was feeling stressed and anxious about our lack of food supplies and communication and for my brother who was running out of insuling and whom we could not even go and get straight away! I also felt worried about my loved ones – some of whom I had not even heard from and didn't even know were safe or not, and of course I felt immense sadness for those who had lost their homes, their loved ones or who were in similar situation to ours. Now can you imagine what effect all these emotions had on my diabetes?? Having hypers was not our major concern because we could manage it, thankfully we had insulin and did our best to keep it as cold as possible but for your information, the insulin does need to be kept at a reasonable temperature and during those few days it was VERY hot so had our power not come back on we could have lost a lot of the insulin. Having a hypo was our major concern because we only had one glucagon each so if we had had two hypos we would have been stuck! And NO, having two hypos in a situation like that is NOT because we have bad control or we don't know what we are doing – it's because of the situation!! We had no control over the circumstances hence we had limited control over the emotions we were experience and we had no idea when we would be able toa ccess more food and when our power would come back on!
Now let me ask you something, if you had been my father, would you have happily said to your own daughter 'Oh you take care of yourself, Laura, you know how to manage your diabetes'. Well I don't know what you would do but I know I wouldn't. IN that situation, where you are all stuck together in the house, not knowing what is going to happen next, and if you will survive should something go wrong, you don't just stick to yourself. No, you help each other and I'm glad my family and I did that. It was important my parents knew how I was managing my diabetes because if i had had a hypo then they would know what i had eaten that day, what my levels had been like and what insulin i had taken. When you have a hypo you're unable to communicate properly so yes, it was highly important my parents were informed of what I was doing.
The reason why I am so upset is because my Dad shared this story in hope that people would understand what we went through and in hope that others might share their stories. We were all very, very sad to read some of the replies to our story. I hope that by reading this, you will finally see that my Dad did not baby me throughout these circumstances but did what any parent would do – help and guide and protect their child – diabetes or no diabetes.
THANK YOU LAURA for speaking out !!!!!!! .. this has been a very emotion filled blog….
so many people live in their own narrow world of experiences.
so many people continue to just live in denial at the acceptance that diabetes is an ok illness.
well it is not .
… and i will repeat again .. as long as people believe that diabetes is a manageable illness, there will never be a resolve to find a cure.
… and just remember .. in under-developed countries … people with diabetes just die!!!!!
thank you for highlighting the most fragile and vulnerable of situations for a diabetic….
… HYPOS are the most unpredictable and the most dangerous outcomes of stressful situations.
my heartfelt feelings for you and you family..