Thank you again for your time reading this blog on living life with Type1 Diabetes. This month I was lucky enough to have a visit from my whole family to my wife and I’s new home on the Island of Tasmania they got to meet the newest member of our family ‘Misty’ the dog. Next month we will welcome my mother and father in law whom will travel all the way from Michigan, USA to visit us. All this family time and some recent interactions with some T1D parents has me thinking of the effects of how important the immediate family is on the life effects and opportunities for those diagnosed with Diabetes.
When I was diagnosed in late 1996 I was very lucky to have the support network of my Mum and Dad more or less by my side throughout the week I spent in hospital and to every doctor’s appointment for year’s to come. They would wake twice every night at midnight and 3am to ensure I tested my blood sugar levels and treated accordingly. They took seriously the gravity of the situation their son was facing but I never recall them displaying any signs of distress, worry, anger or frustration with my Diabetes. I believe their composure helped shape my attitude toward my condition ensuring I did not interpret diabetes to be a bigger issue than it actually was. I knew they had my back if something were to ever happen with my diabetes but I also felt empowered by the trust they granted me as I grew older to go to sleep overs at friends house’s, ride my bike to school and go exploring the local bushland with mates after school. Times have changed somewhat with attitudes to and management of Type1 since 1996 though.
The advent and availability of Continuous Glucose Monitoring (CGM) has enabled constant surveillance of a child’s glucose levels by a rightfully concerned parent. Over the past year or 2 at Diabetes community events I have met a lot of sleep deprived good parents whom have been woken numerous times every night by glucose alert alarms screeching from apps on their mobile phones. The diabetes anxiety I wrote about a few months ago is not exclusive to the person living with diabetes but also effects often more severely the immediate family. I recently met with the parents of a 14 year old T1D boy from far northern Queensland whom had just left for a boarding school in Brisbane where he had received an athletics scholarship. His parents had rightfully recently taken advantage of our governments provision of CGM monitors for T1D patients under 21. They admitted that when that CGM alarm message travelled instantaneously via 4G over 3000km they would be in a world of panic, calling their son and the school staff worrying about their beloved’s wellbeing. Of course each time, their son treated his low/high and was ok. The feeling of waking his parents and the annoyance of constant phone calls from Mum/ Dad was however an issue for the young boy and he would consequently stop wearing his CGM sensor to avoid the hassle on him and his parents. Subsequently, the parents admitted they have taught themselves to switch on their trust, bite their tongues when an alarm goes off and let their young man take control of his diabetes management. Since, his Hba1c has dropped into the single digits from where it was previously far too high. He has also finished on the podium at 3 events in the national schools athletic championship. To manage his diabetes he is lucky to have a CGM AND his own feeling. The difficulty for parents/ caregivers who have access to the CGM data is they don’t have the feeling, they do not feel the urgency in remedying the BSL’s that the person with diabetes has. Successful athletes train by using data from heart rate, power and other tools AND their feeling! The same goes for success in diabetes management, we NEED the data but more importantly our feeling is what allows us to interpret it effectively.
The resources available to people living with diabetes in Australia now really are absolutely top of the line, world class treatment. I have spoken of this before, also we have wonderful organisations like the JDRF and the state based diabetes foundations that provide support beyond medical treatments through peer support groups, diabetes mentoring programs and regular community information events. However, I have noted there is not so much on offer for caregivers/ family members. In particular parents of children with T1D. I have met many parents whom are crippled by diabetes anxiety although they do not live with the condition themselves. I am not a parent yet myself (save for doggy Dad) but can see how powerful the impact of a child’s diabetes diagnosis is on the parents. Support networks and events aimed at parents/ family members I think can have just as if not more powerful impact on young people living with Type1 than support directed solely on the patient. I remember my Mum saying that she attended such a community information session in 1997 where a teenager with Type1 spoke about how she went on a high school exchange term to Japan. The simple knowledge that something like this was possible with T1D helped shape my Mum’s understanding of and attitude toward T1D.
After receiving a diagnosis of type1 diabetes at age ten, Justin’s dreams and goals in life were threatened. Turning to cycling to help him cope with type1 diabetes quickly proved to not only be beneficial but also the start to a successful pro cycling career. Justin spent five years as a professional in road cycling travelling the world racing his bike. Dealing with the challenges of sport and diabetes across five different continents has given Justin a wealth of stories and knowledge about dealing with challenges on and off the bike.
Having since transitioned from a pro cycling career to completing two university degrees in psychology and education from Macquarie University in 2015 and being awarded with a University Blues Award for excellence in sport and academics. Justin continues to fuel his competitive streak with multi day mountain bike racing for team SubarumarathonMTB.com, having achieved podium finishes at The Crocodile Trophy, The Simpson Desert BikeChallenge, The Pioneer in New Zealand and The Mongolia Bike Challenge.
Since 2011 Justin has complemented his cycling career with sharing a message of hope, empowerment and overcoming adversity to audiences internationally.