Murray to Moyne: Ben and the HypoActive team.

Ben Howell, of Ballarat, is the leader of the HypoActive Murray to Moyne cycle team. 

Ben Howell team leader for Murray to Moyne. Photo: The Courier

Ben is 31 and has been living with type 1 diabetes for 20 years.

The team, which is made up of 15 riders who all have type 1 diabetes, aims to raise $10,000 for Diabetes Camps Victoria.

Ben talks about his experience with type 1 diabetes and exercise and what the HypoActive team is hoping to gain from the ride.

This is the group’s 10^th year doing the Murray to Moyne. We’ve got 15 riders and 5 support crew.

We all have type 1 diabetes and some of us are on pumps and some of us are on injections. All our riders are required to test their blood sugars half an hour before their shift and then they do a test five minutes before they start, so we can get a bit of an idea of whether their sugars are trending up or down. As long as their sugars are above 4.5, which is still fairly low, they’re allowed to go out and do their shift in the relay. We have three groups and each group does one hour.

The support crew is like a life support system for us and our bikes. They get our bikes out for us, as we walk out they give us a bottle of Gatorade and a water and a bag of jelly beans and a muesli bar for us to put in our jerseys. All our blood sugars are recorded over the whole ride, and they’re kept busy with that, as well as getting us on and off the bikes and getting food up to us and making sure we’re all ok.

Devo the Wonder Dog is Caroline Maxwell’s dog and she’s got a heavy vehicle license and does some truck driving, so Devo is her first alert system for a hypo. He comes along for the ride and sits beside her on the bus that she drives and makes sure she’s ok. In the ride, he’s there to support and keep everyone under control. I’m not sure how he knows but he gives Caroline a bit a nudge and that’s a bit of a sign for Caroline to think about stopping and doing a blood test.

This is the second year we’ve got two tandem bikes on the team. They’ve got a pilot and a spoker, a spoker being the person on the back, and the spokers this year are vision impaired and have type 1 diabetes. This is a way they can get out and have a bit of fun with the rest of us and not cause any mayhem because they can’t see the other riders as well. It’s really good for them, they’re really keen on the ride, and some really good guys have volunteered their time to pilot them and enable them to get out and do it.

The ride is obviously about raising some money for Diabetes Camps Victoria. We support that program and what they do, but we’re also about trying to raise awareness among people with type 1 diabetes that you can get out and do sport, you can get out and do some really challenging events, just with a bit of support and a bit of education. Each year, most of the team are new; we’re trying to get new riders in to let them have the opportunity and the challenge to get out and have a go in a supportive environment. We’ve got riders flying in from WA and QLD this year.

A lot of people when they are first diagnosed have been told that sport is difficult and they shouldn’t do it, and that’s not right or wrong. For some people it can be very difficult and frustrating but you can do it, and stretch the boundary of what you’ve done before. It’s not about getting out there and having a crack on your own, it’s about having support around you and doing a bit of homework, talking to people around you. That’s what we’re about.

I’m on an insulin pump and have been for three years. Outside of HypoActive I’ve had very little do to with other people with diabetes. Being from a country area you don’t tend to come across too many. I hadn’t always been heavily into sport but getting on the insulin pump has given me a lot more flexibility in what I can and can’t do. I use exercise to assist in controlling and managing my diabetes.

You can donate to the HypoActive team via their fundraising page: http://www.everydayhero.com.au/team_hypoactive_2

To learn more about the HypoActive team, visit their blog: http://www.hypoactive.org/content/murray-moyne-2012-celebrating-ten-years-all-type-1-team

Got diabetes? So what? Get over it.

That’s the light-hearted advice of Gary Scheiner (pictured right), an experienced diabetes educator from the US who has himself been living with type 1 diabetes for more than 20 years.
Gary visited Melbourne late last month, where he spoke about intensive blood glucose management using the latest technology as part of the Type 1 Expert Speaker Series.
Diabetes Australia – Vic caught up with Gary to learn more about his own diabetes, eating pizza, his latest book Think Like a Pancreas and how to stay positive in tough times.

DA–Vic: When were you diagnosed with diabetes?
Gary Scheiner: I was 18 … between my first and second years at university. The interesting part is where I was diagnosed. It was in a small town in Texas called (are you ready for this?) SUGARLAND.

DA–Vic: How do you manage your diabetes?
GS: I have used an insulin pump since 1994. Love the pump – it gives me better glucose control and much more lifestyle flexibility than I could ever achieve with injections. I do carb counting to match my insulin to my food intake.
I also use a continuous glucose monitor (CGM). I’m not very good at sensing my lows, so the CGM is helpful for detecting them while I’m still reasonably rational.
Besides insulin, I take an injectable diabetes medication called Victoza (liraglutide). Victoza belongs to a class of drugs called GLP-1s*, similar to Byetta (exenatide). It helps me to control my incessant appetite. By not eating huge amounts of food and snacking constantly, I’m able to manage my blood sugar and my weight much more easily.
Finally, I use daily exercise to keep myself sensitive to insulin and reasonably sane. I consider my workouts as important to my diabetes management as all of the above.

DA–Vic: You’ve created a Type 1 University. How did the idea come about and what is its main purpose?
GS: T1U came about for two reasons.
First, the vast majority of people with diabetes receive inadequate teaching and management from their healthcare providers. That goes for both rural and urban areas, in both industrialised and less-established parts of the world. Healthcare providers just don’t have the time, resources, and in many cases, the expertise to offer advanced, ongoing care for those who want and need it.
Second, I got tired of seeing webinar-type programs being offered only to providers and not the patients themselves. Why should doctors and nurses have all the fun? Webinars are convenient, easily accessible, cost-effective, and serve as effective modes of teaching. It’s time everyone benefitted.
For those who want more one-on-one education or management help, my practice, Integrated Diabetes Services (www.integrateddiabetes.com) provides coaching services worldwide for people with diabetes through phone, fax, Skype, text, live chat and data downloads. Our primary focus is in working with insulin users of all ages on intensive diabetes management.

DA–Vic: Your tutorial video on how to manage your diabetes and enjoy all types of pizza is very interesting and has been well received on the internet. Why is it important for people living with diabetes to be able to enjoy pizza like everyone else?
GS: For the same reason it is important for people with diabetes to be able to enjoy Halloween candy, Valentine’s hearts, birthday cake, and all the other wonderful treats the world has to offer. We’re people. We just happen to have a medical condition that requires some preparation to enjoy them safely.

DA–Vic: Why is it important for people with diabetes to Think Like a Pancreas, as the title of your book suggests?
GS: That’s really just a way of saying, match your insulin to your body’s needs, the way a healthy pancreas would do. Our ultimate goal is match normal physiology as closely as possible. In practical terms, that means spending as much time within an acceptable glucose range as possible, without having excessive hypos and without it dominating your life.
Thinking Like A Pancreas is all about being on an insulin program that simulates the basal/bolus insulin secretion of the pancreas. The basal insulin should hold glucose levels reasonably steady between meals and overnight. The bolus (mealtime) insulin should be matched properly to one’s food intake, physical activities, stress, and other factors that affect glucose levels. And there are many!

DA–Vic: You see people with diabetes every day. What is the most common question people ask you?
GS: Almost everyone wants to know how close we are to a cure. My answer is always the same. I was told when I was diagnosed 27 years ago that it would be five, ten years until a cure is found. They are still telling people that it will be five or ten years until a cure is found. Instead of waiting around for a cure, take good care of yourself today. When the cure does arrive, and someday it will, you’ll be in the best shape possible and will have enjoyed the best possible quality of life in the meantime.

DA–Vic: It can be really hard to stay positive and keep your spirits high, particularly when you’re newly diagnosed. What advice would you give to people who have just been diagnosed or are feeling a little low?
GS: Everyone has challenges to deal with, so get over it. To deal with diabetes effectively, you have to start each day fresh. Don’t dwell on what happened yesterday, and don’t sit around waiting for a cure or worrying yourself sick. Focus on the here and now.
It never hurts to keep a sense of humour about things. There are some good things that can come out of having diabetes. You’ll never get lost because you can follow the trail of used test strips home. You can get seated in restaurants faster, and receive priority booking for medical procedures. Most amusement parks will let you jump to the front of lines. And there’s almost always some form of food within arm’s reach! Not to mention all the amazing, inspirational people you can meet online or in person through the diabetes communities (like Diabetes Australia!).

*Please note: GLP-1 medications are only approved for use in type 2 diabetes in Australia.

Weight or health – which is the best motivator?

By Dr Rosemary Stanton, nutritionist

Many years ago, I went to a gym and was ‘assessed’ by a fitness trainer. In those days, I used to run for at least an hour every day and my BMI was at the bottom of the healthy weight range. The gym employee, however, assessed my body fat and gave me maximum points for ‘obesity’ and risk of heart disease. I had a good go at him for such a silly statement and explained that the equation he was using had been shown to be false. But when I got home, I started pinching up folds of skin and asking my husband if perhaps the gym instructor had been correct after all.

I have yet to meet any woman who likes being told she is too fat. Most men feel the same way, although some will argue (wrongly) that their ‘beer gut’ is not fat.

If told we are too fat, most of us will feel uncomfortable. Worse, if you already know you are too fat and you’ve tried lots of diets, being told you’re too fat may produce feelings of resentment and depression.

A program in the United States compared two groups of overweight women selected to be as similar as possible. One group was asked to follow a well-balanced prescribed diet that would help them lose weight. They were weighed regularly. The other group was told not to think about their weight, but instead to aim for ‘health at any size’. Before they ate anything, they were advised to ask themselves whether the food was healthy. If it was, they should enjoy it. If it wasn’t a healthy food, they were to consider it as ‘junk’ and look for something healthier.

After 6 months, the two groups returned to their doctors. The dieting group had lost much more weight than the ‘health at any size’ group’. But by 12 months, the dieters had regained much of their initial weight loss and were feeling pretty miserable about the whole thing. The second group had actually continued to lose weight slowly and steadily and were now doing better than the others. They were pleasantly surprised and felt happier and healthier.

I suspect that the big difference between the two groups came from who was in charge. The dieters were trying to do what someone else had decided for them. The second group was in charge of themselves and had been given responsibility for their own choices with the aim of keeping their bodies healthy.

‘Health’ won over ‘weight’ in this study and I think it gives us a clue as to what may make for successful weight loss. Choosing foods that are good for health is empowering. Eating what someone tells you is not.

Some years ago, I was working with a weight loss group of women. We discovered they all loved chocolate cake, but felt guilty about eating it. Most said they wolfed down cake and other ‘bad’ foods so as to minimise the time they felt guilty. Most felt bad after eating the cake under these conditions and none felt satisfied by the experience.

So we set them an exercise. Once a fortnight, they were to go with a friend and look for a really good piece of chocolate cake. There was one condition: they had to walk past and discuss with each other at least two and preferably three cakes that were displayed in glass cases in cafes in the local shopping mall before making their choice. They could then go in and share a piece of the best looking cake. They were to eat it slowly and enjoy every mouthful. Having searched for a really great cake, and sharing a slice, they had no need to feel guilty.

After this exercise, the women agreed that when they were given permission to eat the cake, it tasted much better. Eating it slowly with great enjoyment, they were happy to forget about chocolate cake until the next occasion in two weeks time. After the second try, some said that they actually didn’t think any of the cakes on offer were really all that good and thought they’d wait and try another shopping mall another time. We had empowered the women to be in charge of the chocolate cake rather than chocolate cake beckoning them. Their overall intake of cake decreased and their satisfaction increased dramatically.

Dr Rick Kausman, a Melbourne GP who teaches overweight women to like themselves – now rather than when and if they become thin – offers similar ideas in his book, titled ‘If not dieting, then what’. It’s a great read and has helped many people to change their perspective on weight. Local libraries usually have a copy.

The take home message is that we need to respect our bodies – whatever their size or shape. By thinking well of ourselves, we’re more likely to take care of our bodies.

Dr Rosemary Stanton is a leading Australian nutritionist. She writes a monthly blog for the member only section of Diabetes Australia – Vic’s website and has kindly given permission for some of her posts to be reprinted in our public blog. Thank you Rosemary!

The opinions and thoughts expressed in Rosemary’s blog posts are her own and not necessarily endorsed by Diabetes Australia – Vic.

Eleven Years of connectivity

Shoes, glorious shoes!

It’s my pump-iversary. For eleven years I have been connected to a little machine that delivers insulin so that I can…well, live. Live well. It’s been all over the world with me, in the delivery room as my daughter came into the world, and witnessed other important moments in my life. Admittedly, the pump sitting discreetly in my bra today is not the same one that I met eleven years ago, but I still feel I should celebrate this milestone in some way.

For the first three years I used a pump, there was no NDSS subsidy.  Each and every month I had to find $300 to pay for the consumables.  I called it my shoe money because for those three years my shoe collection barely grew.  And in those three years each line change cost me over $20. This translated to three years of leaving in the cannula until the last possible moment, often leaving behind a nasty, angry, red sore.

I spent a lot of time and energy writing letters to my local, state and federal members of parliament, desperately trying to explain the need for pump consumables to be more affordable.  Whilst I was able to scrimp and save to ensure that I could continue to use the device that I believed had changed my diabetes life, I knew of many others who could not.

The inequality of the system angered me and I had many meetings with people I hoped could make a change. One of the people I met was now-PM Julia Gillard. For half an hour, she listened as a group of us explained why insulin pump therapy should be more accessible and affordable for more people living with type 1 diabetes. I know many others who also requested meetings with politicians to plead our case.

And then, in May 2004 then-treasurer Peter Costello handed down a budget that provided subsidies for people with type 1 diabetes using a pump who met certain criteria.

I celebrated by going out and buying a pair of boots with the money I’d saved for the next month’s supplies.

There are still a lot of things about diabetes care that make me angry.  There is still inequality in the system and there are still some people who can access some treatments more readily than others.  Often, money is the reason.

The next battle line, surely, is accessibility to continuous glucose monitoring (CGM) technology. Currently, sensors cost $75 each and need to be changed every 6 days. Do the math and you’ll see that adds up to over $4,500 per year for consumables alone. The hardware device adds another $1,200 to the cost.

How many of us have a spare $5,700 lying around? That’s a lot of boots. A. Lot.

So for me it’s time to but my lobbying hat back on. The fatigue I felt after years of writing and meetings about pump consumables has now passed. But it was so worth it. I can’t imagine my diabetes self-management without the use of an insulin pump. And I know how much better things are for me when I am using CGM. I have more information and with that can make more informed decisions about my diabetes management.

But for today, after eleven years of being in love with a little beeping, vibrating (!) machine, I AM going to celebrate. Perhaps a nice pair of sling backs or (and?)  Cuban-heeled boots will do the trick!

Renza Scibilia is the Manager of Type 1 Diabetes and Community Programs at DA–Vic. She has lived with type 1 diabetes since 1998. The opinions and thoughts expressed in her occasional blogs are her own.

You can follow Renza on Twitter @RenzaS

The DA–Vic Blogger Search

It’s blogger search time at Diabetes Australia – Vic! Just like on Australian Idol, you need to show us what you’re made of. But unlike Mark Holden, Marcia Hines and Ian Dickson, we’re not here to judge you, we just want to get to know you.

Now, we can already hear your cries for Renza’s blogs but never fear, they’ll still appear occasionally here at DA–Vic Blog central. But since Renza has spread her wings and flown the nest with her very own blog – Diabetogenic, we’re searching for some awesome new bloggers.

Send an email to blog@diabetesvic.org.au, tell us what your story is and you could very well become the next DA–Vic Blogger Idol. Sorry, did we just take the Idol analogy too far?

So whether you’re an experienced writer, or a newbie. Whether you have type 1, type 2, gestational, pre or any other type of diabetes. Or not. We want to hear your voice, so get typing to blog@diabetesvic.org.au.

How I cured my diabetes

So, I’ve just returned from a six week holiday in New York City.  It was amazing and I loved every minute of it.

In addition to visiting galleries, eating cupcakes, listening to lots of jazz, eating, browsing the NY library (my favourite place in the city!), eating cupcakes, shopping, wandering through Central Park and eating cupcakes, I discovered a cure for diabetes.  So all up, it was a pretty successful holiday. And I ate cupcakes.

Being the caring sharing type (1) I’m giving you the secret for free. Here it is:

Move to New York.

Yep – that is what did it for me. And given the quantity (and frequency) of cupcake eating that occurred, I’m going to say that cupcakes – specifically red velvet cupcakes from Magnolia Bakery – seem to be vital to this cure too. (I could also suggest that spending a lot of time and money in Bloomingdale’s will aid the curing process, because, once again it featured strongly.)

Renza enjoying New York's cupcakes

OK – let me be serious for a minute and tell you what is really going on. I just spent six weeks where my days involved sleeping as much as I wanted, walking everywhere (at least four kilometres a day – usually more), doing what I wanted and surrounding myself with beautiful music and works of art.

I did not juggle a crazy-busy job, run around for and after a seven year old, make sure that said seven year old is fed, watered and clean, get myself to work at a reasonable time, spend time with my partner and ensure that I know what’s going on in the lives of other people near and dear to me.

And in there, I did eat a lot of cupcakes.

Of course I didn’t cure my diabetes. But what the six weeks showed me is that by stopping, stepping back and taking some time for myself, my diabetes behaves itself a lot better. Walking everywhere and the removal of stress from my life meant a considerable reduction in insulin, hypos, hypers and ‘I-hate-diabetes’ moments. Diabetes was a part of the day, as was getting my morning coffee, bagel and copy of The Times.

It wasn’t a pain in the backside that was stopping me from getting to a meeting on time. What’s that – insulin cartridge running low? Sure, I’ll just take those five minutes to refill. About to walk out the door? Those 45 seconds it takes to do a BGL check would not impact on getting anyone to school late.

It made me realise how I cut diabetes-corners all the time when I’m in my normal non-NYC life because apparently, the 45 seconds saved is necessary.

Of course, what I fail to realise is that the 45 seconds saved as I fly out the door will inevitably become 15 minutes an hour later when my BGL crashes and I need to stop to treat a low.
So, now that I have it all sorted out, I’m going to ask my endo for a new prescription to accompany my insulin. Six weeks in New York, please. I’ll need to get it filled quite frequently – probably six monthly – but surely the PBS will pay. Hey – I’m using less insulin, so surely it will all balance out.

Renza Scibilia is the Manager of Type 1 Diabetes and Community Programs at DA–Vic. She has lived with type 1 diabetes since 1998. The opinions and thoughts expressed in her occasional blogs are her own.

You can follow Renza on Twitter @RenzaS

Leaving on a jet plane…

From this weekend, I’ll be in Dubai for the International Diabetes Federation World Diabetes Congress (blogs to come and follow @RenzaS for tweets) and once I return, I have a day to do the exciting washing, unpacking, getting over jetlag thing only to then board a plane to New York for a six week holiday, a (hopefully) white Christmas and more boot and shoe shopping than should be legal.

I’m not telling you this to sound like I have a ridiculously faaaabulous life. (Seriously, I don’t!)  It’s more that I need to keep saying it aloud and writing it down so I realise that I really, really NEED TO GET MY BACKSIDE INTO GEAR AND START GETTING ORGANISED. Deep breath!

I hate being in transit. Last year on a return flight from NY, I nearly threw a tantrum on the LA to Melbourne leg of the looooong journey. It all started off well enough: middle of the night flight, the then-five-year-old exhausted so fell asleep as soon as we boarded as did I. We managed six solid hours sleep at which point I woke up. And realised that we still had nine hours on the plane before we landed in Melbourne. Nine hours. The words ‘How is it possible we live so far away from everything. We are never going to get home. I am never going further than our front door again. I. Want. To. Get. Off. This. Plane. Now.’ were all uttered.  Cue strange looks from people around us.

So, I’ve been in denial about the upcoming trips, because I don’t want to think about the horrific boredom of sitting around airports, sitting in aeroplanes or dragging luggage around. (Yes, I know, first world problems.) And the denial has led to doing practically nothing to get myself organised.

Here is what I have done to plan for my upcoming trips:

Dubai – I’ve found out where to get good coffee. (I actually squealed with delight when I found out the Brunetti’s has an outpost in the Dubai Mall!)

New York – I’ve found my list from last year of where to get good coffee.

Nothing else. Not a thing!

Of course, in true making-everything-that-little-more-stressful character, there’s the diabetes angle. So where I used to be the sort of traveller who would throw a pair of jeans, a couple of pairs of shoes, a couple of tops and a toothbrush in a suitcase, now I need to plan with the precision of a military campaign.

Of course, I haven’t.

Here is what I haven’t done:

• Checked that I have enough insulin to last me seven weeks. And when I say seven weeks, I actually mean more like ten to account for any spillages, possible increases to insulin dose (AKA Christmas) etc.
• Checked that I have enough pump supplies and BGL strips for seven (or ten) weeks.
• Checked that I still have my letter from my endo that says “This person has diabetes. No, you can’t take her insulin pump away from her.”
• Sifted through the diabetes supply cupboard at home (yes, this is a real thing!) and find a spare meter that works – and corresponding, in date strips.
• Bought some blood ketone strips for my existing meter.
• Thought about what to take with me on the flights to deal with the inevitable hypos (from lack of decent carb-containing foods) and the inevitable hypers (because I am so damn stressed to be in transit).
• Ordered some sensors so I can wear a CGM whilst in transit to alarm every time I am heading for an inevitable low or high (and annoy anyone within earshot with the beeping).
• Organised my loan pump from the lovely people at Medtronic who kindly provide a ‘traveler’s pump’.
• Remember how to use long acting insulin in case that my pump and the loan pump both combust.
• Actually have some long acting insulin.
• Buy some needles to give myself said long acting insulin (and short acting) in case of pump combustion.
• Locate my Frio pack which will keep my insulin (once I get around to organising it) cool whilst in transit.
• Sign travel insurance papers.

Clearly, I have a lot to do between now and boarding. Also, please note the above list only has diabetes-related planning. The regular-this-is-what-people-without-diabetes do list hasn’t even been considered.

But, I now have a list!  And that’s a starting point. And hey, the silver lining is that if I ‘forget’ to pack enough clothes/shoes/makeup/scarves/boots etc, well, I’ll be in two shopping capitals. And that makes me feel a whole lot less stressed!

Renza Scibilia is the Manager of Type 1 Diabetes and Community Programs at DA–Vic. She has lived with type 1 diabetes since 1998. The opinions and thoughts expressed in her occasional blogs are her own.

You can follow Renza’s International Diabetes Federation World Diabetes Congress Adventure via Twitter @RenzaS