This is the third and final post about DxAmsterdam.
My first post didn’t really relate to #DxAmsterdam at all but my experience of going through airport security to get to and from Amsterdam
My second post was published on Thriveabetes and was an update on the reimbursement status of the Freestyle Libre.
And this post is a complete round up of the weekend.
Friday afternoon, despite a dawn flight from Shannon airport, I arrived too late to be part of the organised bike tour of Amsterdam and to be quite honest I was relieved. I’m a nervous cyclist at the best of times but with so many people, cars and bikes everywhere in the city, I think I would’ve had a nervous breakdown.
I met up with my fellow European bloggers at the welcome reception that evening. It was familiar face after familiar face as soon as I walked into the room. However, only one or two of those faces I had met before. I love social media!!! It makes you feel like you are friends already. AND I have to say a very, very big thank you to Adrian Long (@AdrianLong3) for starting the Twitter message group so that we could do preliminary introductions in advance of the trip.
Next up was a presentation by a local volunteer organisation, much like Thriveabetes, who have their own support and information website and amazing projects. EenDiabetes.nl, which means One Diabetes Foundation, is run by a team of volunteers who write really good blog posts and are worth a look.
It’s founder, Mattias shared how he saw a need for a support hub for young adults with type 1 diabetes, being one himself, and started a private Facebook group which then evolved into a website. Does that sound familiar? 😀 This would have been an extremely valuable brainstorming session but, sadly, we ran out of time to complete it. We need something like this for our 20 + year olds with type 1 diabetes.
I loved that the host country did a presentation on what they are doing and why they started it. And it gave us an idea of what living with type 1 diabetes is like in the Netherlands.
We mingled afterwards over a buffet style dinner. A number of us soldiered on into the night, even though we’d all been up early to travel, there was huge enthusiasm to mix with fellow bloggers and find out more about diabetes in each others’ countries.
It all starts with a dream: Claire Lomas’ Story
Saturday was an early start too but it was SO worth it. We were joined by Claire Lomas, MBE from the UK and her husband, Dan. Claire’s life turned upside down on 6th May 2007 when she became paralysed from the chest down in a horse riding accident. “Claire was a Chiropractor and top level event rider when this freak accident left her unable to do the things she loved. Over time, she found strength and courage to rebuild her life by finding new interests and work as well as raising hundreds of thousands of pounds for research.”
You might be wondering how she raised that money for research? Well, in 2012, she walked the London marathon! Click on her website please!
Yeah, I know! And then!!! She showed us photos of her baby girls and that was the end of me holding in the tears. Claire spoke passionately about her journey from the day of her accident to when she found herself again.
She told us that people only see the not walking part of being paralysed. They don’t see any of the other problems, challenges, and health challenges, such as the loss of bodily functions below the chest, or accepting how much you body has changed in appearance and the wasting muscles. Such an amazing woman!
Claire also said for a long time she focused on what she couldn’t do and it was frustrating and disheartening. It was very difficult to find something to get up for in the morning. Then she started thinking about what she actually could do, even if the were little things, she started taking every single opportunity that came her way and decided to try everything. Claire’s talk lead us nicely into our next presentation.
#Dreambeyond: Inspiring others to dream
This was our introduction to Abbott’s Dream Beyond Ambassador programme which came about from a survey where it was discovered that 67% of parents of children with diabetes believe that their children’s lives are limited by it. In my experience of hearing stories from the Irish diabetes community I believe it will serve to educate healthcare professionals also. The stories we’ve heard from the professional type 1 diabetes cycling team; Novo Nordisk’s Team Type 1 and how “12 of the 18 guys in the 2016 team, were told by their doctors you’ll never race a bike again – that it’s just not possible with diabetes.” Well guess what!
Our next speaker, Josu Feijoo from Spain is aiming to be the first person with diabetes in space. He is being sponsored to travel under Richard Branson’s Virgin Galactic space programme, which hopes to take two pilots and 6 passengers into orbit in 2018. Will Josu be abroad? We have to wait and see. Wouldn’t it be amazing to have the last glass ceiling of type 1 diabetes smashed to smitherings.
However, I’ve found lots of evidence that first person with diabetes in May 2006 was Geri Winkler, Austria, the first insulin dependant pwd and Will Cross, United States, the first person with type 1 diabetes. I’m struggling to find an official record of Josu’s climb that isn’t a media article but maybe he just hasn’t gotten around to it.
The power to dream: Life coaching session
Then, we had some personal development time with Personal coaching from In2Motivation on how to get to our dream/goal/objective/the thing that I want. And how to figure out what type of dreamer am I; explorer, planner, director, together and what I need to be more of. Our speaker told us that “Sometimes only changing one word opens a new door.” How our obstacles can sometimes be opportunities; Moments to pause, think or recharge. It was interesting and thought provoking.
Capturing the world through pictures: Photography learning tour
Next up was a Walking Photography Tour. I must say this is one thing I don’t do enough of – take photos. This is where I got my first real taste and smell (!) of the real Amsterdam and I might add took most of my photos. It was great doing this with other bloggers because that meant that there were numerous prompts for photos and I was actually in some of them!
Going further into diabetes monitoring: real-world data and innovations
We then had two presentations from Abbott representatives on the Freestyle Libre, how it’s impacting diabetes management and further developments to expand its connection to smartphones and software. I wrote about this here.
As we sat in this bright room that afternoon, I was struck by the high number of people in the room who were wearing some form of glucose sensor tech; be it a Libre or a CGM. There were 25 bloggers attending this event and we all had type 1 diabetes. I think that in the greater diabetes community this observation is very much the reverse. I’m usually one of the few people in the room who wears an insulin pump and/or a CGM. So for me to be in a room where I am not unusual was very nice. I think bloggers are such motivated people that they actively seek out better devices and information to better manage diabetes.
Quantitative Self Conference
Sunday, we arrived into an alternative universe full of people who love data, love to measure things like food, exercise, sleep, productivity and just life. This was the Quantitative Self conference where everything is quantifiable. I attended the “Measuring Food & Metabolism” workshop. The workshop was facilitated by a gentleman who took photos of his food to record what he was eating to help him improve his health. This was great for him because the simple act of taking the photo made him more aware of what he was eating and reluctant to eat junk food. However, the pwt1d in the room were waiting for what came next. What did he do with the photos? Well, this is where we took over the workshop, suggesting a multitude of apps to measure nutritional information and we gave a little lesson on what type 1 diabetes actually is. So one up for us in the diabetes awareness area! Wahoo!
After a quick bite to eat most of us boarded a bus back to the airport where a bunch of us got to hang out for a number of hours until our flights. For me, it was not being ready to say goodbye and face the long journey home solo. I’ve only had three opportunities to meet up with fellow bloggers and I don’t know when my next opportunity will be to consort with fellow “trouble makers” like myself. I just hope there is one:-)