Diabetes and the Online Community

In and Around the DOC of Late V

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Hello, February! In amongst the long Sunny days and balmy nights, there’s been a few things that have crossed my radar of late. So grab a coffee and settle in!

I’ve noticed a lot of conflicting information circulating in Facebook groups recently surrounding the new Cellnovo insulin pump being withdrawn from the Australian market, with suggestions that the parafin wax was unable to withstand the Australian Summer heat.

With no official communication from either Cellnovo or the NDSS, I can only assume that the product has not actually been recalled, but rather just that new Cellnovo units are no longer for sale. I have since learned that an upgraded Cellnovo system is expected in the next month, which will be swapped out with all existing Cellnovo units before becoming available to new customers on the waiting list.

Speaking of pump choice, there’s been a lot of speculation about AMSL Diabetes acquiring a new pump to distribute following the demise of Animas. While Tandem’s t-slim touch screen insulin pump with Dexcom integration would feel like a natural successor for AMSL, it is not currently listed on the Australian Register of Therapeutic Goods (ARTG) and cannot be lawfully be distributed in Australia. Given that approval can take a number of years, I’d be inclined to say that it’s unlikely at this stage.

What has received approval, however, is the Omnipod tubeless pump as well as the tubed Ypsopump from distributor Ypsomed Australia. More recently infusion sets, software and the starter box have been submitted. Time will tell…

The Oz Diabetes Online Community lives on! David @davidburren can be found hanging out under the #OzDOC hashtag on Twitter every Tuesday night from 8.30 to 9.30pm for anyone in the community seeking out peer support in the slot recently vacated by moderator Kim. There’s also a new Twitter account @OzDOC_host, where weekly chats are being run from.

Here in Australia, it’s a given that most of us wouldn’t think too hard about the cost of our insulin thanks to generous government subsidies. What you might not be aware of, however, is that the full cost of a script of insulin is several hundred dollars. In other parts of the world, this insulin is far less accessible and a lot less affordable.

February marks the annual Spare a Rose campaign in the diabetes community. The idea is to spare a rose on Valentine’s Day, and donate the cost of that rose (roughly $6 AUD) to a child with diabetes in need of insulin. Sparing just one rose will provide a child with life for a month in the form of insulin. You can find out more and donate at sparearose.org.

Finally, the Young Adult Diabetes Committee here in Perth are hosting their first event for the year on Thursday February 22. Dr Kirstie Bell will be sharing some insights from her research into fat and protein’s effect on blood glucose levels (you can read more about Dr Bell’s research here). If you live in Perth or you know of anyone who does, please pass this on. You do need to register through Eventbrite, however.

After starting my work week on Sunday this week, I’m fuelling myself purely on caffeine and on the countdown to a three and a half day weekend. Happy hump day!

Diabetes Brigades.

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I was trawling through my Facebook feed yesterday when I was distracted by one post in particular. It wasn’t the content that caught my attention however, but rather the brigade of comments that accompanied it.

With many schools going back this week after a leisurely six weeks off (one can only dream), the post was providing some suggestions for school lunchbox snacks.

I didn’t think there was anything particularly bad about the items suggested. Most of the suggestions were only small snack sized portions, and obviously not every item on the list would go into the lunchbox at one time.

I knew that if I were a kid, these would sound like pretty popular options to me. In fact two of these suggestions were in my own lunch box earlier that day, which I had carb counted and given insulin for. I imagine that I would feel very comfortable among my friends in the school yard with suggested snacks such as an apple or a yoghurt.

The aggressive comments, however, told a very different story. People felt the need to begin picking these suggestions apart for a number of different reasons, and linking them to all sorts of horrible diabetes end games. These comments were a pretty poor reflection on the community that I have come to know and cherish.

Yet I couldn’t help but come back to the bit about two of those very suggestions being in my own lunch box earlier that day. Put yourself in the shoes of a parent, or any person with diabetes for that matter, who is packing some of these very typical school food items into their lunchbox. How would you feel, reading a brigade of comments shaming your food choices and your parenting?

Now imagine that the person reading these comments isn’t in as comfortable a place as you are with diabetes. Where could that potentially lead you to? Feelings of guilt? Depression? Diabetes burnout? Disordered eating?

Despite how much of myself I’ve shared with you on these pages, it is not my place to give you advice, tell you how you should be managing your diabetes, or be making you feel guilty if your approach to diabetes doesn’t agree with mine.

Diabetes management is a very individual issue, and I truly believe that the foundation should be built on the needs and preferences of the individual. If that means letting a kid be a kid and eat a muesli bar or a handful of popcorn, then so be it. But hey, that’s only my two cents. 

If the suggestion you see online doesn’t suit your individual needs, then you’re certainly not obliged to take it next time.

P.S. I think Diabetes Australia have done an outstanding job on the resource Mastering Diabetes in Preschools and Schools, and I strongly encourage you to check it out here.

Farewell, #OzDOC.

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When I first dipped my toes into Twitter three years ago, the Oz Diabetes Online Community was one of the first places where I found peer support online.

I very much looked forward to Tuesday night Twitter chats, where participants would come together and answer structured questions about diabetes in a very supportive and engaging environment.

Inbetween chats, it was not uncommon to put a random diabetes question out there with the hashtag OzDOC and have it answered. OzDOC gave me the opportunity to network with other people with diabetes here in Australia, something I did not have in my own life at the time.

Over the past five and a half years, OzDOC has been largely led by co-founder and operator Kim. She has been the one responsible for making sure the moderator’s throne is occupied each week, and that there is a topic and questions ready to go.

Kim does a stellar job in welcoming participants to the chat, steering the conversation, and most importantly supporting and encouraging participants as they share candid insights about living with diabetes. To this day, chats just don’t feel the same when she is not in the moderator’s seat!

More recently, I stepped up and formed part of a moderator’s group of seven. Together we brainstormed topic ideas and took turns in moderating weekly chats. We’ve also seen healthcare professionals engage in our weekly chats, valuing the insights that I can only imagine would be difficult to gain in a clinic setting.

Another highlight from OzDOC would surely be having the opportunity to meet some of these amazing individuals at Abbott’s Diabetes Exchange in Sydney last year.

When Kim recently announced to the group her intention to step away from OzDOC co-ordination duties, it was a decision I totally understood. Running a support group like OzDOC in one’s own time is a big commitment each week. Even with a team of moderators, Kim still shoulders a great deal of responsibility in making sure chat slots are covered, questions are suitable, social media reminder posts are scheduled, and all of the other behind the scenes administration.

Members of the moderators group were offered the opportunity to take over Kim’s co-ordination duties, however nobody felt they were in a position or capacity to lead. I felt that realistically, this was not a commitment that I would be able to make next year and that the time was right for me to move on.

The final OzDOC chat will take place Tonight at 8.30pm AEDT. Be sure to also check out the Oz Diabetes Online Community Facebook page, where Kim has been sharing a bit of a retrospective over the past couple of days.

After tonight’s final chat, the @OzDiabetesOC Twitter account will cease. Does this mark the end for OzDOC? Who knows. If members of the community would really like for it to continue, then I’m sure that they’ll find a way.

To Kim and to everyone else involved in the OzDOC community in some way or another, I just wanted to say a massive thank you. You have all made my world just that little bit smaller.

Technology Changing Diabetes Outcomes at #ADSADEA2017

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Another standout session from my time at the ADS-ADEA conference was a symposium on technologies changing digital health outcomes.

Professor Brian Oldenburg introduced us to the ‘new’ health communications landscape in a digital era, which was nothing new to many of the consumers in the room! The promise of technology is great, but how do we ensure that it has sufficient reach and sustainability? With technology ever evolving and enhancing, keeping up with it is a real issue.

The buzz word of the conference popped up once again, with talk of the need for ‘person centred’ design in these digital technologies. I felt that this would be a great opportunity to engage with digitally savvy consumers, such as the DA People’s Voice team who were all there frantically tweeting in the room! I would hope that the healthcare professionals in the room were reassured by the promise of digital technologies complementing, rather than replacing their fundamental role.

Digital health programs were challenged by their usability, engagement and outcomes. As we were introduced to a digital diabetes coach, I was really struggling to see how such a program would be engaging or motivating. While it’s true there is no judgement in a robot’s voice, there are also no expressions of empathy or other human elements that help us to foster trust. I was also skeptical that older people would have the computer literacy or appreciation for these programs. Many still prefer to be served by a teller at the bank, or by a person at the checkout. I’m a big advocate for providing options and not forcing technology on those who don’t want it. However, I was surprised to hear that these programs were being taken up by both older and younger people.

You can see the digital health coach for yourself and decide:

Bec Johnson of the Telethon Type 1 Diabetes Family Centre was next to take to the stage, talking to us about how digital technologies have played a fundamental role in helping the family centre to reach across the whole of WA. Can I just say how nice it was to sit there as a West Australian, having something that the East Coasters around me envied? You can check out my sneak peek inside the Family Centre right here.

Bec began talking about how isolating type 1 was for her, and her sentiments just echoed among many of the consumers in the room. She shared that it took 10 years until she first began connecting to other people with diabetes through the Reality Check forums here in Australia. Those forums were her saviour, and she knew that online communities would be a pivotal part of building a type 1 community here in WA.

The Family Centre’s closed community Facebook group is about connections, rather than information sharing. I was rather impressed as Bec told us that the group had ‘conditioned’ this culture among the group, with many participants quick to politely call out posts seeking clinical advice. New entrants to the group are screened with a series of questions, in order to maintain a safe space for parents to share some of their deepest darkest thoughts. The Facebook group also allows consultation with the community on events or programs, in order to deliver the needs of the community.

Bec highlighted the Diabetes Detective program, which would not be possible without shared CGM data and remote contact with Diabetes Educator Amy Rush to smooth out any blood sugar issues. Other examples of online education from the Family Centre include the ‘Cyber Carbs’ online carb counting course and Type 1 Babysitters training. Bec also touched on online crowdfunding, raising an impressive $10,000 for the Family Centre for her swim to Rottnest Island earlier this year.

I was only saying last night how it often feels that the contribution of an actual person with diabetes doesn’t feel valued by healthcare professionals, conference organisers, organisations and companies in the diabetes space.

What I loved most about Bec’s talk was how much it proved the value of having a person who has hands on experience in diabetes, working in diabetes.

Also, I’d really love to see the foundation of the Telethon Type 1 Community translate into something for young adults one day.

Disclosures: Diabetes Australia provided me with a media pass to attend the ADS-ADEA 2017 conference, with the view that I was interested in attending and delivering my own, honest insights to the wider diabetes community.

Yoga For Diabetes: Q and A with Rachel Zinman

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Earlier this month, I had the pleasure of finally meeting Rachel Zinman of Yoga For Diabetes at Abbott’s Diabetes Exchange in Melbourne. Rachel and I both began blogging in early 2015, and we first connected during Diabetes Blog Week. Rachel lives and breathes Yoga, and since her diagnosis with LADA, is passionate about helping others to realise the power of yoga in managing diabetes. She spends half the year based in northern NSW, and the other half of the year in South Africa teaching Yoga. Later this year, she will also be kicking off a tour across the US to launch her book, Yoga For Diabetes.

 

 

Rachel is one of the most generous and enthusiastic people I’ve come across in the Diabetes Online Community, with a great respect for other’s opinions and ideas. For some crazy reason she is one of my biggest fans, and I’ve greatly appreciated all of her support and encouragement over the years.

Rachel is kicking off a 7 day online Yoga challenge on September 1, Better Diabetes Management in 7 Steps with Yoga, which you can learn more about here. Today, she joins me here at Type 1 Writes to answer a few questions about the challenge.

Frank: Yoga and diabetes. They’re not two things that I would automatically put together in my head. You’ve obviously been practicing yoga well before diabetes came along. Tell me a bit about how yoga has helped you to manage your diabetes?

Rachel: I started yoga in the the early 80’s. Back then yoga wasn’t trendy at all. I did it because I had a lot of pain in my lower back from being a professional dancer and my chiropractor told me it could help me. I noticed the calming and healing aspects straight away. I felt more energised after a class, my mind was calm, my digestion improved and I found myself letting go of unhealthy habits and being more positive.

When I was diagnosed I focussed on bringing additional energy into the body through strong breathing exercises. I also practiced postures to tone the digestive organs including the pancreas. I worked with the sister science of yoga, Ayurveda, to find a practice that suited my physical type (I am very fiery) and the type of diabetes I have, LADA (Latent Autoimmune Diabetes in Adults).

I discovered:

  • Improved sleep.
  • Better and more stable blood glucose levels.
  • Increased insulin sensitivity.
  • Resilience in the face of stress.
  • Better digestion.
  • Stable weight.
  • A positive attitude.

Frank: Obviously, you’re kicking off a 7 day yoga challenge on September 1. Tell me a bit about the challenge, and what I would be doing every day if I signed up. How easy would it be to take up the challenge, and what sort of time commitment would I be looking at?

Rachel: The challenge is all about how to incorporate yoga into your life and your daily diabetes management plan. So each practice is between 3 and 10 minutes long and most can be done sitting in a chair or comfortably on the floor.

The practices are designed to reduce stress. A lot of people think yoga is a physical practice to increase flexibility. But there is so much more to yoga than that. There are a variety of tools we can implement to meet the demands of a life with diabetes.

The first step is to discover your Ayurvedic type. On the first day you’ll fill in a questionnaire and read a bit more about your type. Then we’ll explore a different practice each day to calm the nervous system.

Sound, visualization, hand gestures, breath, a simple yoga practice done lying down and on the hands and knees to improve circulation. You’ll also learn a traditional ayurvedic foot massage, which I think is the best part of the challenge.

Frank: The biggest draw card for me when looking at the yoga challenge is mindfulness. I often go to bed with a million thoughts on my mind, and don’t take a lot of time out. Tell me a bit about how taking up your yoga challenge could help there.

Rachel: As I mentioned each practice in the challenge is designed to reduce stress. The biggest stressor is our tendency to get carried away with our thoughts. So whether we are breathing or working with sound, or a visualization or even the physical practice, the guidance is to continually bring our minds back to the task at hand. The more we can bring our minds into a one pointed focus the easier it is to pull ourselves out of our habitual tendency to identify with thoughts.

It actually doesn’t take much to get the mind to be present. We just need to train it. I love that saying, “wherever the attention goes that’s where the energy flows.” So if we are getting caught up in our thoughts about diabetes or anything that stresses us out, that’s where the energy goes.

Bringing our minds to a sound, image or the breath etc. the mind is focused and calms down and energy flows effortlessly.

In my personal experience, these simple yoga practices are the first step in mind mastery and teach that it’s easier to master the mind then we think. We just need to set a few minutes aside and have the willingness to take that first step.

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Rachel blogs at Yoga For Diabetes, and you can find her on Facebook, Twitter and Instagram.

Her 7 day yoga challenge kicks off on September 1, and you can sign up here.