Hedgie Pricks Diabetes “Greater Minds Inspire” event – 6th July 2013

Aiming to inspire

Hedgie Pricks Diabetes (HPD) was set up by Zoe Scott with the aim to promote greater awareness of the psychological, emotional and social issues faced by any person with diabetes (PWD). As a father I’m especially concerned about these issues affecting my daughter, who’ll enter her teenage years in a few months, and am quite worried about the number of stories I hear of teenage PWDs who “go off the rails”, who fail to realise the consequences of their lack of diabetes care now and how it may affect things like their eyesight in a very short space of time.
I want Amy to be proactive about her diabetes and to realise that she can achieve great things, regardless of diabetes and that if she puts in the time managing it she’ll reap the benefits later. In short I wanted her to be inspired and that, in a nutshell, is why we signed up for the Greater Minds Inspire event.

Introduction from Zoe Scott

Zoe welcomed us all to event, thanked us for coming and spoke a little about Hedgie Pricks Diabetes and today’s event and the speakers who we’d see later.
Zoe and I have followed each other on Twitter for about a year now and I’ve followed her progress, through winning last year’s QiC People’s Award and setting up this event. It’s difficult to remember that she’s only 22 when you look at what she’s already achieved and especially how calm she was presenting to us at this event; I couldn’t do that and I’m double her age.

Video from Team Novo Nordisk

Zoe introduced a special video from Phil Sutherland, who created Team Type 1, which was later rebranded to Team Novo Nordisk. This team contains teams of cyclists, runners and triathletes who are competing at the highest level, whilst all having Type 1 Diabetes. The cycling team is so good it’s expecting to be able to enter the Tour de France very soon.
Whilst competing in races and tours the team also promote diabetes under the banner ‘Changing Diabetes’ and help the PWDs in places they visit, such as their recent donation of 400 blood glucose meters and 35000 test strips to people in Rwanda.

Flying with Type 1 Diabetes – Douglas Cairns

Douglas spoke about being a pilot before a diagnosis which which effectively ended his flying career, or so he thought. After trying out other careers he set about trying to fly again, gaining his license to fly privately in other countries, such as Thailand and USA. He then embarked on some major flights in his private plane: flying around the world and a flight to the North Pole. His talk was very well received, the kids seemed captivated and on seeing what he’d done Amy whispered “wow” to me a few times.

Kitesurfing – Pete Shaw

I was very keen to listen to Pete Shaw talk. I’ve loved surfing (badly) for years and whilst kiteboarding seems out of my reach due to fitness, it’s great to watch. Pete started his talk with some photos of people kiteboarding, racing on top of the waves, jumping waves and getting some air; I glanced at Amy with her jaw dropped and she turned to me and said “I want to do that”.
Pete explained that having Type 1 didn’t hold him back, he just had to plan a little more and he spoke well about the safety bits he does to make sure he can enjoy the sport and stay safe. He mentioned that people with Type 1 Diabetes could do anything; kitesurfing, rock climbing, base jumping.
“Base jumping” said Amy “what’s that”.
“Amy, he’s got that wrong” I smiled “you definitely can’t do that” said the worried parent. (I explained later that of course she could do it but after seeing some videos she decided not to pursue that idea.)
His key message was that the kids in the audience could do some really great extreme sports, with just a bit of planning ahead. As a parent I was pleased to hear this.
In the lunch break Pete let us all have a go on his Indo board which was great fun, if not incredibly difficult. Amy was a natural at it.

Climbing Mount Kilimanjaro – Dilan Shah

Dilan Shah was manning the JDRF stand during the day but was also a speaker. He spoke about how he had a lack of control of his diabetes and how he wasn’t sporty at all. Until that is the idea of running the London Marathon gripped his imagination and something he completed in 2007, albeit in a slower time than he’d hoped for. He returned in 2009 to complete it again, this time in an impressive 4 hours 30 minutes.
In October 2011 he climbed Mt Kilimanjaro in Tanzania, raising money for JDRF on the way. He spoke about his training, his expectations of insulin management from the advice he’d been given and the reality of walking up a mountain for up to 16 hours in one of the days. 16 hours!
He ended his talk stating that he believed that Type 1 Diabetes would not stop him accomplishing his dreams, reinforcing a common message running through the day so far.

From Coach Potato to Ironman Triathlete and Channel Swimmer – Claire Duncan

As the title eluded to Claire never grew up with dreams of being an triathlete or channel swimmer, instead focusing on a music background. She spoke about how she found that she liked running and swimming, entered some sprint triathlons and ended up completing an Ironman 140.6 triathlon. That’s an amazing achievement in my eyes and I could see that Amy was impressed: she knows how hard it is to cycle 27 miles, let alone a 112 mile cycle ride, sandwiched between a 2.4 mile swim and a 26.2 mile run.
She spoke about swimming the English Channel, how freezing cold it was and the weird sensation that a jellyfish sting gave her as it warmed her up as its poison worked its magic!
Claire gave out the message that there will always be some sport or fitness that you will enjoy, you just need to find it; that you don’t need to be the fastest, the longest, the best, it’s okay to do it in your own time. By doing this Claire has completed marathons and the hardest triathlon in the world.

Running from John O’Groats to Land’s End

Next up was Gavin Griffiths to talk about his recent challenge where he ran from John O’Groats to Land’s End covering 30 miles a day for 30 days. Many of you will know that I got involved for the last four days and Amy and Jane cycled for one day.
Gavin spoke about his challenge and showed photos from some of the days, telling us stories of how people he hadn’t even met before pulled him through the challenge, offering lifts, beds, meals and support.
A big part of Gav’s challenge was to inspire type 1 kids and as he reeled off the names of a few – Beth, Angel, Danny, Tom, Alfie, Mimi, Amy – it was clear that he had achieved that goal. More exciting for my family was when he started to speak about the last week of the challenge as he spoke about the great involvement from my friends: Chris and his son Alfie (pictured top) who ran into Bristol with Gav; Annabel and Jeff for driving/running for two whole days with their type 1 daughter Mimi running with Gav into Taunton. Gav then praised us (pictured bottom) for our support and mentioned what a great effort Amy had made on the penultimate day.
Take a look at some videos of the kids who took part in Gav’s challenge.

A wall of emotions

There was a set of boards at the event where the kids could write down their feelings about diabetes, the bad bits, the sad bits, the good bits and their inspiration. Many kids had written their feelings for all to see and I know that everything Amy feels was represented on the boards. Hopefully some of kids realised that they’re not alone in the way they feel by reading the thoughts of others.
Here’s just a few of the things that were written:

Finally…I had a feeling I knew who’d written this one

I was happy to read this, it was half the point of getting involved with Gavin’s GBR30/30 Challenge in May, and getting Amy cycling for the day and running with Gav’s Olympic Torch.

In summary

It was over a 5 hour round trip for us to attend this event but I’m so glad we did. Events like this don’t come up often – or in this case ever before – so it’s worth going the extra mile (literally) to support them.
I know Zoe had hoped that more people had attended this event but I’ve seen less people at events organised by the big charities. The event was very well put together and Zoe should be applauded for achieving this.
Each and every speaker was superb and whilst they all had their stories to tell they all shared a common message: your diabetes need not stop you doing great things.
Amy left the day inspired.
Right, must go, apparently I’ve got to look into Kitesurfing lessons for kids!

Travel in India with type 1 Diabetes – Amy’s story (viewpoint from a child with diabetes)

In late July 2011, exactly 7 months after Amy was diagnosed with type 1 diabetes, we backpacked around India for four weeks, in a trip we called Monsoon Meandering.

This is the last post in the 14 article series about that trip and its planning and how type 1 diabetes played a part.
The previous posts are full of facts and viewpoints but this one is the most important, it’s the story from Amy about what she remembers about the trip and adjustments she had to make.

Hey, the name’s Amy.

I’m 12 and I was diagnosed with type 1 diabetes on 29th December 2010.
My family and I were already planning to go to India the following summer and we were going to go to Ladakh which is in the Himalayas. After I was diagnosed my parents quickly started to wonder whether we should go to India or not. Through his research Dad had found out that getting altitude sickness was a real possibility on the two road trips through the mountains and he wasn’t happy about dealing with that at the same time as diabetes, both of which we knew nothing about. So it was decided, we would not be going to India that year. Thinking back now, they were probably trying to figure out how to break the news, when they heard me say to the doctor “Does this mean I can’t go to India any more?“. It was this that changed their minds. We were going to go to India (even if we went somewhere different) and nothing was going to stop us.


Changing the trip plan

Whilst thinking of an alternative trip my Dad tried to think specifically what I liked the most about India; it was trains. He decided that we should go on lots of them, just for me.
Altogether we travelled around 2700 miles on just 8 trains and the trip was organised all by ourselves! No help whatsoever from travel agents or such. We saw monuments, holy places, tombs, caves, palaces, trains, beaches, cities and we even went to a waterpark – we were the only ones there! How cool is that!? All of that for a whole month.


Flying, excitement, worries about injections

I have been to India once before – before diabetes – and I loved going on the plane so I was really excited about going on it again, but I was worried about the injections and the food. Before it came to mealtime we told the staff that I was type 1 diabetic and they went and found an apple for my pudding. Also they gave me my food first in case I had to count carbohydrates (which at that point I didn’t because I was still in my honeymoon period but it was still very thoughtful of them). When it came to injection time I was worried and didn’t know how we would do it, but my mum, who was sitting next to me, set it up and did it in my arm and the best bit was I didn’t even have to get out of my seat!


I love India’s trains

Trains are exciting because I barely use them in England and there’s very few sleeper trains, which I love. A sleeper train – clue’s in the title – is a train which has padded benches for you to sit on during the day, which then turn into beds for during the night. India has so many of these because the distances are so great, some trains go for three whole days from start to finish. We travelled thousands of miles across India by train using upper class, middle class and lower class trains. The poshest train was from the capital city (Delhi) to Amritsar (the hottest of the places we went). We had padded, reclining seats and were served meals by waiters in traditional Indian uniform, it was the fastest train we took.


Overcoming fears of injecting on the trains

I don’t like any distractions when I do my injections at my house so I have to have the light on full, have everyone completely still, have no talking or T.V and no cats moving in the room. So when I did the injections on the trains I had to adapt but everything went well as we came up with an awesome method. First we would wait until we were near a station, then when the train stopped I would have my injection ready to whip out and do. If I did it as soon as the train stopped, then I would be sure that it wouldn’t start to move whilst I was in. But I love trains, and I wasn’t about to let diabetes ruin them for me.


Weird ceremonies in Amritsar

Whilst at Amritsar we saw the stunning Golden Temple and we witnessed the weirdest ceremony ever (video) – where they close the border gates between Pakistan and India. There were men dressed in Indian army suits with stupid fans sticking up on top of their turban! There were people running up and down the road and when they got to the Pakistan border, they waved the Indian flag in their faces. As the border closed the soldiers goose stepped up to the gate and almost stuck their tongues out at the Pakastani soldiers, however it was all in good humour…or was it?


Loving the Homestay adventure

One of the many adventures that we had in India was going to live in a Homestay. This is where (clue’s in the title again) you stay in one of the local’s homes. We knew that we were going to the Homestay and that they’d be poor, so we decided to bring our old clothes and school uniforms. We gave it to them and although they were girls clothes, and our hosts only had boys, they took them gratefully. We also gave them a frisbee and a bat & ball which they loved and they taught me a new game that I can still remember now. Coming back to the diabetes side of it, I did my injections after my meals because I decided three days in to the one month trip that I didn’t like India food any more. What a fail. It turned out that it was just one thing – paneer, a type of cheese they use in curries – which I’d gone off.


Jamming in Hampi

Another place we went was Hampi which looks as though a giant has scattered some pebbles (what we would call boulders) in totally random places. Hampi is a small village with lots of huge rocks randomly placed around the landscape. It has a many temples, a market, a river and plenty of places to stay. It was so beautiful.

I met a music man, he came from far away,
now I can play (what can you play?)
I play the kololu.
Kolo-kolo Kololu Kololu Kololu Kolo-Kolo Kololu Kolo Kololu.

The music man was called Gali and he taught me to play the Kololu (think of a flute then turn the buttons into holes and make it wood) for free. I decided to buy it but we didn’t have the money with us right then so he said take it and pay me back tomorrow which was really nice of him as he didn’t really know us.


The world’s best Mango Tree

There is only one word that can describe The Mango Tree; magical. The Mango Tree is a cafe/restaurant where you can sit outside to eat and watch the river and all the wild life around it. The Mango Tree was a little walk away from where we were staying but it was worth it. We had to walk through a banana plantation and when we got there I had a Banana Paratha and a Banana Milkshake. We sat on the straw mats on the floor and waited for our food and then I spotted a Kingfisher in front of the river!


Lakshmi the Elephant takes a river bath

Talking of animals, one day in Hampi my family and I went down to the river to see Lakshmi the Elephant having a wash. It was funny because they asked if anyone wanted to be blessed by Lakshmi and my mum was determined to, but when she saw that actually it meant she would have to go in the river and get a full soaking of water from Lakshmi, she decided not to.
As I said earlier, I have been to India twice, and last time I went, we went safari-ing and we saw many animals including an Indian Rock Python and a Tiger chasing a Wild Boar!


Getting my first tattoo

One of the many things that India is famous for is Henna. Henna is an ink which is used to draw a pattern onto your arms or legs. It stains your arms or legs until two weeks later when it eventually fades away. Generally it is used for women on special occasions such as their wedding day however when I was out in India I got my Henna done within the last week so I could show my friends. I had it done on both my arms and I bought some Henna powder so I could make some more at home, and I still have it after one and a half years.
Here’s a video of me buying henna/blocks at the market in Orchha

Thank you for reading about my adventures, I hope my story makes you realise that diabetes doesn’t have to stop you doing things you want to.


Travel in India with type 1 diabetes – flying, medical letters & adjusting basal

In late July 2011, exactly 7 months after Amy was diagnosed with type 1 diabetes, we backpacked around India for four weeks, in a trip we called Monsoon Meandering.

This is post 7 in the series about that trip and its planning and how type 1 diabetes played a part.
This post is predominantly geared towards people with type 1 diabetes, rather than general travel advice. For info, at the time Amy was taking 7 units of slow-acting Levemir each night at 8:30pm and the follow doses of fast-acting Novorapid for each meal: 10, 7, 6 which were adjusted depending whether she was high, or low.

Getting anxious about flying

Whilst Jane was generally nervous about the travelling/diabetes combination I had done so much planning I was getting blazé about the difficulties we might face on the trip. One thing we did worry about together was the whole airport/flying/injecting thing.

A letter of consent

With all the recent changes in airport/airplane security we were nervous about how to transport Amy’s insulin and needles: putting it in the rucksack in the hold could result in lost luggage and insulin; carrying it on board gave us worries about needles and liquid and security regulations.
When she was diagnosed we were given some travel literature and it advised that we should request a letter from the hospital which stated Amy’s condition and her medication requirements, this in turn would be shown to the security desk at the airport and we would be allowed to carry the insulin/needles on-board.
Way before we were due to fly Jane got the letter and we were all set, albeit still slightly nervous.

A word about flight times

In 2009 we took an overnight flight to India leaving at 10pm and arriving at midday (Indian time), a flight that didn’t go well as we got hardly any sleep on the plane. We thought an overnight flight would be better as we wouldn’t waste a whole day flying but instead we wasted a whole day – after arrival – sleeping. However after the first night our body clocks were adjusted to the local time. Amy didn’t have diabetes back in 2009.
This time we decided to try a day time flight, leaving at 10am and arriving before midnight (Indian time, about 7pm our time). This seemed to work out much better as we didn’t need to worry about sleeping and just had fun on the plane watching films and eating. However it tooks days for our body clocks to sort themselves out.

Calculating the correct basal (slow acting insulin) dose

Amy normally takes her basal insulin – Levemir – at 8:30pm, so the night before we flew we had to adjust her dose.
During August India is 4.5 hours ahead of England which meant that Amy’s first injection in India would be at 4pm as far as her body clock was concerned.
Therefore we adjusted the Levemir dose using the following calculation, bearing in mind that Amy was on 7 units Levemir and the difference between 8:30pm and 4pm is 19.5 hours.
Normal basal units divided by 24 hours, multiplied by number of hours between doses.
= 7 divided by 24 multiplied by 19.5 hours
= 0.29 multiplied by 19.5 hours
= 5.6875 units.
We decided to give 6 units and delay her first injection in India by 30 minutes, giving it 9pm, which would fit in better with holiday time.

At the airport

We always make sure we arrive at the airport in plenty of time and arrived four hours before our flight on purpose, giving Amy time to eat a decent breakfast before we even checked in. It was funny seeing her sat on our baggage eating Weetabix out of a plastic container we’d taken.
At the check-in we made sure they knew she was diabetic, even though it was noted when the flights were booked. The check-in person made us feel quite at ease and told us just to show the letter to security and we’d be let through without issue.
Jane went first holding the letter in one hand and the packaged diabetic kit in the other, showed the letter to the security person who guided us through to the family aisle and within seconds we were through.
No fuss. No checking. We felt silly for being so worried beforehand.

Breakfast number two

Whilst in the departure lounge it was time for the rest of us to have breakfast and in true form Amy decided she wasn’t just going to sit there and watch us eat. So it was time for another bolus for her. At the time she was on a fixed bolus (fast-acting) insulin dose per meal, which was adjusted if she was really high or really low. We weren’t carbohydrate-counting at the time and looking back I can’t imagine how we coped with semi-fixed doses.

Meals and injecting whilst flying

Before we were served our first meal Jane spoke to the cabin crew and asked it was possible for them to let us know 20 minutes beforehand so we could sort out Amy’s injection. This was no problem for them, they’re obviously quite used to it.
Although we were sitting together in a row of four Amy didn’t want to do her injection in the cabin so Jane and her went to one of the tiny loos, getting a few strange looks when going in together. It was a little cramped. Amy was worried about movements due to turbulence but it worked out fine.
We hadn’t specified a special meal for Amy but the dessert was a full-on sugar one. Without us saying anything the cabin crew apologised and went and got Amy a piece of fruit.
Amy did go slightly low (3.6mmol) on the plane but generally her numbers on travelling day weren’t too bad: 7.0, 5.3, 9.8, 3.6, 9.7. We’d expected it to be a lot worse.
There were no other problems on the flight and the cabin crew were wonderful.

Next up – buying diabetes supplies in India