Ashley Ng

Riding the Diabetes Surf

Hey everyone, my name is Ben. I’m 24 years of age and I’m a surfer and a Physiotherapy student, and I was diagnosed with type 1 diabetes when I was 11.

As a competitive surfer with type 1 diabetes, good management is crucial to being able to focus on my long-term goals, upcoming contests, and training. The last thing you want to have happen is for an unexpected hypo event to take your focus away from the situation at hand entirely. But training and contests can be tricky, especially when this active lifestyle contrasts with the rest days and rest weeks I need as I complete my Physiotherapy course at university. That’s why I’ve made a point over the last few years to create and stick to some systems that I know will allow me to stay on top of my diabetes no matter the circumstance I’m in.

Eating before bed: I have found that if I stay disciplined with snacking and when I eat my main meals, I am able to keep great control over my BGLs. The main thing here is trying to have my last meal about an hour and a half before I go to bed. This is definitely something I don’t stick to 100% of the time but by doing this consistently I have found that it gives me an eight-hour window where I really don’t need to worry about my levels.

Fasting for basals: I have found by giving myself days where I may do some form of time restricted eating (typically missing breakfast and eating lunch anywhere from 12:00pm – 2:00pm) I can ensure that my basal settings are great which is another bonus as getting this right takes the stress out of wondering whether my glucose levels will be trending upwards or downwards between meals.

Consistent meals, less snacking: Now I have had a number of things that have worked for me, one of which being intermittent fasting. The reason this has worked, similar to not eating before bed, is that if my basal levels are great then I essentially have another part of the day where I don’t need to worry about my levels. Eating within a 8-10 hour window just means that I’ve got a larger percentage of my day where I’m less stressed about my levels. Now intermittent fasting can be good but the same goes for eating a great breakfast, lunch and dinner without the in-between snacks. These in-between snacks are what I’ve found typically throw things out of sorts where it might be something we see as not big enough to bolus for or may be something we grab out of a jar.

Sure, diabetes can be very demanding, but a good way I’ve heard it explained before is to gamify the situation. Now this isn’t to say that diabetes is fun and that we should play around with it like it doesn’t matter, but with all of the technology we now have available, like being able to see the glucose trends using a CGM and being able to watch in real time how the basal and bolus doses are going, we can set some realistic short term goals for ourselves. This has been a real change in perspective for me, as we all have a long term condition, but these short term wins keep me motivated and prevent me from slipping into a rut.

Personally, I don’t know how my life would have gone if I wasn’t diagnosed with type 1 diabetes at 11. But what I do know is that diabetes has been a strong factor in influencing me to be very health conscious. Would I have developed an interest in strength and conditioning? Or Physiotherapy? I’m so interested in learning how my body responds to different forms of exercises, different foods, stress levels whether this be in the lead-up to competition or being put on the spot through Physiotherapy placements. I like to be optimistic with my diabetes. I personally believe that these systems I have put in place so far make keeping my blood sugar within range easier and less of a hassle.

I don’t want to limit my perspective to being just a healthy diabetic. By exploring what works for me, exercising regularly and developing a real interest in health and well-being I’ve set the important goal of striving to be the healthiest human I can be.

Mini Postcards from AADE in Houston

Last month, Beta Change were lucky to receive sponsorship from Roche Diabetes Care and AADE to have a booth in the inaugural Peer Support Communities Corner at the 2019 AADE conference in Houston, Texas. We were incredibly humbled to be alongside superstars like We Are Diabetes, College Diabetes Network, Just a Little Suga’, Diabetes Sisters, DiaTribe, Children with Diabetes, Diabulimia Helpline, DiabetesMine and Tidepool. Throughout the conference, we had many visitors ranging from industry members, clinicians and other diabetes advocates. It was great to see so much enthusiasm and interest from a variety of people from different backgrounds on the importance of peer support.

While we were there, we managed to get the word about Beta Change out through our flyers. In return, we asked visitors to write us some words of wisdom or advice for other people with diabetes and diabetes advocates around the world. Check out our slideshow below to see some of the responses we received and thank you to everyone who participated!

Once again, thank you to Roche Diabetes Care and AADE for looking after us and providing us with this opportunity!

Living with Hope

In our last blog post, we talked about the importance of sharing stories. Recently, I attended a momentous diabetes event that reminded about the significance of this. During National Diabetes Week in Australia every year, the Kellion Victory Medal acknowledges and celebrates a special milestone for people who have been living with type 1 diabetes for 50 years and over. We know how challenging living with diabetes can be and many of us celebrate or acknowledge our diaversaries. So it’s only fitting that we throw a big party for a milestone like 50, 60, 70, 75 and 80 years of living with a broken pancreas!

As part of the Diabetes Victoria Consumer Engagement Community, I was invited to present the medal to awardees. To me, this is a tremendous honour as I got to read each of the recipient’s stories as they received their award. Their stories talked about their struggles, achievements and most importantly, how they’ve lived their best lives. It was a huge privilege to share such a special moment in their lives with them.

Reading out story after story, it dawned on me how much diabetes technology has evolved and how quickly it has advanced over the years. Time and time again we heard about how blood glucose monitoring was the biggest turning point from them when we’re here pining for the next CGM update! We heard about boiling syringes for to sterilise them before use and innovative ways of collecting urine samples from babies to test their sugar levels. We also heard how many of these inspiring people with diabetes advocated for change and pushed the boundaries and stereotypical perceptions of what we can achieve while being pancreatically challenged. We heard about women with diabetes having healthy babies and raising thriving families and business people travelling the world and navigating time zones and different cuisines with what we consider now to be basic technology. Yet, time and time, we hear the resounding them of people living full lives despite diabetes. We heard about resilience, hope and love.

For many of the Kellion Victory Medalists, they attributed their successes to having adequate support from family, friends and loved ones. Love and support came through in different ways, from helping with hypos to being a sounding board. These guys showed us that diabetes is tough, but having your tribe around you makes it a bit easier. Speaking to some of these medalists, they would never consider themselves to be inspirational figures. Little do they know how much it means for the younger generations of those living with diabetes to hear their story and the hope that it brings. These individuals have paved the way for us forward be it as a role model, for future research, technological improvements or support services. To our Kellion Victory Medalists, we say thank you.

Live On. Give On. Dream On.

Earl Bakken was a dreamer, an achiever, the co-founder of Medtronic and the inventor of the first portable pacemaker. Years later, when he was due to receive his own second pacemaker, he marvelled at the extra life this piece of technology gave him. He thought about the other people around the world whose lives had been extended due to a piece of medical technology or procedure.

“Wouldn’t the world be a better place if everyone did something to give back to the community with their extra life?” The Medtronic Bakken Invitation award was born from Earl’s forward thinking.

Live On. Give On. Dream On.

I feel privileged to be selected as a Medtronic Bakken Invitation honouree alongside 11 others from around the world, out of over 200 applicants. Together with our care/support partner or a loved one, honourees travelled to Hawaii for a week to share our stories, learn from one another and prepare our projects we plan to undertake with our extra life.

Hawaii was where Earl chose to retire after a brilliant career. In Kona, the Big Island, Earl was well known for all of his philanthropic work, bright energy, and community spirit. Many people we spoke to, from tour guides to shopkeepers, knew Earl’s name, and they knew of his contributions throughout the island.

We spent an afternoon visiting some projects that were dear to Earl’s heart. Each new project was vastly different from the last. From the Makalii voyaging canoe program to reconnect the future generation with their culture to the planning and building of the North Hawaii Community Hospital that integrates spiritual healing with modern science, Earl’s passion and dreams knew no limit.

We had a wonderful facilitator from KornFerry who prompted us to reflect on ourselves and our work.

We shared highlights from our journey alongside the lowlights. We were reminded that bad experiences often reflected upon a positive turning point in our lives, and that this inspires the resilience, determination, and spirit needed to overcome obstacles. We talked about what it meant to be an influencer and the power of storytelling. We talked about trust and confidence in a team and the various personal attributes that went along with it.

Throughout each exercise, we identified our strengths and learned strategies to improve our weaknesses. Most importantly, we talked about managing our energy and maintaining that work-life balance. Often advocates do what they do on a voluntary basis, but the commitment becomes like a second job. We were reminded that before we change the world, we need to look after ourselves.

And just like that, our week together

was over as we concluded the workshops with the dreaded circle of reflection and sharing (of tears). The Bakken Invitation is undoubtedly a special and memorable event, made even more so by have our care/support partners or loved ones there by our side.

Sometimes we get so lost in our own world, chasing the next thing, that we forget to celebrate all the achievements we have accomplished. What better way to celebrate all our work and efforts by this Hawaiian retreat! What an inspiring week away filled with so much learning, sharing and making new friends from all around the world. Now I’m ready to bring all this back to the team and together, we’ve got some exciting projects coming soon.

Thank you Earl for making this possible and for believing in us. You may not be here physically with us anymore, but your spirit and legacy lives on.

AADE 17

A couple of weeks have flown by since the American Association of Diabetes Educators (AADE) Annual Meeting. I’ve been taking this time to reflect on the busy few days that was AADE17, which was filled with many new learnings and plenty of networking. Here are my main summary points from the conference. Don’t forget to check out our Facebook page for my daily takeaways from each day at the conference.

1. Affordability and Accessibility
#Access4all has been a huge movement over the past few years with the rising cost of insulin. But I realised that we can and should actually break this down to accessibility and affordability. Access is the first barrier predominantly faced by developing countries. Without access, it doesn’t matter how much money you have, getting insulin is difficult. The other problem that we see, especially in countries like the United States, is insulin affordability, which draws a real divide between the wealthy and the poor. However, access is there, whether it be through emergency departments, free clinics or cheaper varieties of insulin.

Both are difficult challenges to tackle and I believe that part of the solution is to work closely with industry, government, healthcare professionals and people with diabetes to drive change, which brings us nicely to our next point.

2. Collaborative approach to change
Part of our mission at Beta Change to bring industry, healthcare professionals, researchers, policy makers and people with diabetes together to create change within and across diabetes communities. For the past year, we have been trying to find the right channels to reach out to other stakeholders. From many of the sessions, it sounds like they’re willing to collaborate too. So we’re doubling our efforts to make this happen. It is crucial that the voices of people who are passionate to create change in the global diabetes community are heard. In time, we hope that your voice and your passion can lead to a partnership with Beta Change. If you’re interested, feel free to drop us a line, we’d love to chat!

3. The importance of mentorship
One of the special moments of flying across the world for AADE to share my research was the opportunity to meet many of my international diabetes friends who also attended the conference. Throughout the conference, I was lucky to be provided with very wise words, guidance and encouragement personally and professionally. And I thought “imagine what budding diabetes advocates could do with such inspiring advice and networks”, which reinforces our goal at Beta Change to develop a mentorship program so that potential leaders can have the same support and resources to achieve their advocacy efforts.

So there you have it! Those are my takeaways from AADE17. Check out the #AADE17 on Twitter for more conversations.

Disclosure: My attendance at AADE17 was partially funded by a grant from Deakin University, Australia, as part of my PhD program and for a poster presentation on my research. The grant covered my flights and some accommodation costs.