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The 2nd #GBDOC Conference (#PWDC16)

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pwdc16Last year’s first ever #GBDOC conference for people with diabetes turned out to be very successful, very popular and very enjoyable, so I was glad to hear Team Blood Glucose were going to run a second one. This year’s conference was set up to be a two-day affair at the more upmarket Colwick Wall in Nottingham.

Going, not going, going

As much as I’d enjoyed 2015’s conference I couldn’t really attend this year’s as I had commitments on the Saturday and couldn’t justify the £150 expense (tickets, hotel, travel) and I was sad to disappoint the several friends who’d hoped I’d go. Then Abbott stepped in to support the event financially making it free to attend and more importantly meaning I could attend for just one day, on the Sunday.
As it turns out my Saturday event was cancelled so I could have blooming gone for both days.

The excitement rises

As with last year’s conference my Twitter feed started buzzing several days before the event, everyone excited to finally meet or meet again people they’d spoken to daily for numerous years. If truth be told the conference itself wasn’t the draw for me at all, it was the people.

Trying to avoid Saturday’s excitement

treeAfter finding my Saturday event cancelled and disappointed that I could have attended the conference’s first day I couldn’t face the excitement on Twitter and decided to I needed to distance myself. So I positioned myself up one of my apple trees to give it a little prune, I think I may have overdone it as it took all day.

Stupid o’clock on a Sunday

A 6am start on a Sunday is unheard of but was a necessary evil to be able to arrive at Colwick Hall for the 10am start after a 3 hour, 175 mile drive.
It felt ironic that with so far to travel I was actually the first to arrive, closely followed by my good friend Nick and we went in to be welcomed by Rhodri, who helped organise this year’s event.
Nick, Rhodri, me, and no-one else.
pwdcarrival

A sea of friendly faces

People started arriving, Bob, Philippa, Sacha, Sarah, Steve, Paul, Jules&Lee, Lydia, Lis, Jo, Veeny and so many more. Chatter and laughs filled the room and it almost seemed a shame to break it when the conference started.

Open format conferences, the way forward

In open format conference style there was no agenda and it started with everyone deciding what they wanted to talk about and the topics were grouped together and sessions arranged.

Session One: MDI to Pump and Tech

A few people, Philippa mainly, had asked me to attend the conference just in case anyone wanted to ask me any tech questions regarding CGM, Nightscout or xDrip, so it made sense I’d join this session. I was pleased to hear that Tim Omer had done a great job on the Saturday with chats about xDrip, OpenAPS, HAPP and general artificial pancreas and CGM topics.
The session started off with a discussion about pumps, an intro on what they are, benefits of using one and about getting approval from clinic/CCG to get one. To be honest after 15 minutes I’d switched off a little – as it wasn’t so relevant to my situation – and happily chatted quietly with Steve whom I live a few miles away yet travelled 175 miles to chat to.
But I heard Lis say ‘Kev would you like to say something?’
‘Erm, no’ I panicked ‘I’ve not really been listening’.
The pump discussion had concluded and they wanted to hear about tech, from me, now; I really should have thought about this in advance.

CGM, xDrip, Pebbles, glanceability

Recently I’ve spoken to many about Nightscout, the ability to see your kid’s glucose values from afar, but Nightscout isn’t really suitable for an audience of adults, so I switched to talking about getting glucose values on a watch on your wrist.
Taking a step back I went through CGM and particularly how DexcomG4 broadcasts a signal out to anything which wants to listen.
Moving on to xDrip I explained the £40 DIY kit I’d built back in January 2015, which some had seen at last year’s conference when Amy demo’d it to a few.
I spoke about the glanceability benefits of having your glucose level on your watch gives and explained how it helped Amy through the day, especially being at school where use of phones is banned or frowned upon.
Nic and Alyssa asked some great questions about Dexcom and Medtronic CGM and I answered questions about extending the life of DexcomG4 sensors – obviously no-one does that right?! – and different positions they can be worn.
The time whizzed by and 20 minutes later and it was time for me to shut up.

The Afternoon Sessions

After a lovely lunch with great conversation with Philippa and a table of others it was time for the afternoon sessions although I’d decided session two would be reserved for a chat with Jules and Lee whom I was surprised to see, knowing that she was worn out by day 1.
For session three I joined in with the ‘Food’ topic, interested to hear other people’s opinions on food, different diets they used to manage their diabetes and its effects on glucose levels. After a great discussion led by Nick and with some great input from Vicky and Jo, before Paul arrived and Nick asked him to explain Low Carb High Fat and how it worked for him.
I found myself nodding with Paul’s chat so much my neck ached, he’s really got the knowledge of this completely sorted and it was a breath of fresh air to listening to someone helping others out with fact, not fiction nor flippant comment. Paul spoke in length about ketones, ketosis and diabetic ketoacidosis (DKA) and explained why people with diabetes can deal with ketones. He also answered many questions on how to get started in becoming ketogenic, truly great advice for those who were there and interested.

Post sessions chat

Yet again more time was devoted to chat with friends old and new and I enjoyed my chats with Bob and meeting Tim, Melissa and Matt for the first time, as well as chatting with numerous people who’s names I sadly haven’t remember.

It’s all over

And before we knew it the conference was all over and it was time for the long drive home. I’d had a great day, it seemed everyone had a great day/weekend.

Thanks

I’m not exactly sure of who did what but I’d just like to thank Paul, Alex, Rhodri and TeamBloodGlucose for all they did to organise and run the conference. It’s truly a great event I’d suggest everyone attends next year.
I’d also like to thank Abbott for the investment which meant that I could attend.

#PWDC15 – The People With Diabetes Conference – The Sessions

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Diabetes conference poster2015In the last post about PWDC15 I wrote about how I felt about the day and how it all started; in this post I’ll go into the sessions.

My main focus would be anything parent or carer related, diet related and teenager related and of course if I could match that up with some cycling talk that would be great. Within a couple of seconds of staring at the agenda I knew my first two sessions:
          Session 1 – Partners’ Moan, hosted by James.
          Session 2 – D in Teenagers, hosted by Marianne.

At some point I hoped to attend either the Food / Diet / Issues session or Low Carb.

pwdc15 agenda

Session one – Partners’ Moan

In fairness I was having too much fun chatting with people face to face so I totally missed the start of James’s Partners’ Moan session, rocking up late when there was no seats left, but luckily my wife let me share hers.
I’ve known James for a while and wasn’t surprised that he proved himself to be an excellent session host, with many things to ask and many (, many 🙂 ) things to say. The topics were varied and almost everyone in the room was engaged with the conversation touching all areas of living with someone who has diabetes.
It was sad to hear how some people – like me occasionally – have trouble sleeping because of worries about night time hypos for their partner/child and I offered a couple of ideas how to make things easier.
Some stories were funny, some were sad and others down right worrying and some very, very good points were raised by all. I found James’s thoughts particularly interesting, although in the interests of confidentiality we’ll keep these secret between the session attendees, James and his wife.
I realised part way through that there were two Type 1’s in the session but I’m really glad they came as it gave us carers/family a really good insight into how they see things; I’m pretty sure they also got a lot out of it.

Session two – D in Teenagers

In what turned out to be a theme for the day I was (fashionably?) late for this session.
I was pleased to see my wife Jane already in there along with friends Karen, Rachel and Marianne who I’d met for the first time earlier that day, after years of chatting on Twitter and Facebook. Another chap named Nick was there, he’d had Type 1 since an early age – it turned out I’d cycled with him last year in the inaugural TeamBG Cycle up Box Hill.
I’m so glad Rachel and Nick went to that session as without them we would have just been a few parents with still unanswered questions. Their stories whilst maybe a little worrying were evidence that things don’t need to always be spot on to turn out well in the end.

Lunch and time for Amy to shine

Vicki's picture of the xDripLunch-time came far too quickly but gave another opportunity for networking, saying hello to more people I knew from Twitter and Facebook, like chatting with with Rhodri and talking to Paul S about my recent work on xDrip, seeing Amy & Emilia quite relaxed whilst chatting and playing games with people they’d never met.
That for me was a lovely thing of the day, where people felt at ease to go up to Amy, introduce themselves and chat about stuff. Like Vicki who chatted with Amy about xDrip, and others who asked her how she felt about being ‘stalked’ with xDrip – for the record she doesn’t mind too much. Hey and look at that on the picture, 5.1, nice!

Session three – Low carbing (and a bit of cycling)

LCHF-dekal
…if you want to

Guess what, I was late for the start of this one too.
This session was hosted by Sacha, another cyclist I met on the TeamBG Box Hill ride last summer. We’ve bumped into each other quite a few times online since, especially in the low carb arena where he’s gone from strength to strength. Also in the session was Rachel & Andrew whom I’d met before and amongst others was Jeff who I’ve known for a while but never met before. Some guys from the sports nutrition company Torq were also there.
Sacha started the rounds asking people to say how many carbs they consumed a day on average and numbers ranged from 150 to 20, with the guys Torq stating that it wasn’t worth asking them, on account of the number they consume. Interestingly most agreed that the carb count shouldn’t normally include any sport fuelling for long rides. Discussions were had on foods that work, foods that don’t, tips and tricks – such as Jeff who goes for snacks of Pecan Nuts as “they’re cheap in Lidl”, in contrast to Sacha’s (and my) Macadamia Nuts which certainly are not cheap in Lidl.
I asked if anyone drank Bulletproof Coffee and kind of wish I hadn’t when I described it and saw the look of horror on their faces. I initially came back with a ‘it’s not as bad as it sounds’ before agreeing with Sacha that it was an ‘acquired taste’.
I really loved this session as I have never felt at ease talking about LCHF on Twitter or Facebook due to the fact that I’ve faced abuse because of it. In this arena we all shared the same aim and belief and it was good.

#PWDC15 – The People With Diabetes Conference – The Day Starts

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Diabetes conference poster2015On Saturday I had a brilliant time attending the first ever conference for people with diabetes, run by people with diabetes.
Its concept was a gamble, running several simultaneous chats based on an agenda only compiled at the start of the conference, by the people attending the conference.
Did the concept work then?
Hell yeah!
In fact it’s hard to imagine how it could have gone much better (although of course I have a few suggestions, post to follow).

Thank you, thank you, thank you

To all in TeamBloodGlucose, especially Midge, Paul and Rebecca, thank you so much for creating, hosting and subsidising this event. I’ve always respected the work TeamBG do, even more so now.
You gave everyone who frequents any of the online tweetchats and multiple Facebook groups the opportunity to meet face to face after years of chatting online.
Whilst I’ve met lots of people the opportunity to meet people from the other side of the country, like Lavinia and Jeff, in a central(ish) location was great.

The event starts…prepare yourself for some name dropping.

Arriving in MediCity I bumped into Nick (@t1diabeticbiker) and Ingrid, then straight into Jules (@Jules1315) and her family. Inside the venue I didn’t know where to start, who to talk to first. The lovely Lavinia came up for a hug and a chat, followed by Alan (no hug 🙂 ) and then Phillipa, James and many, many more.
Taking our seats and bumping into Sam (@sam_dysch) whom I didn’t recognise I sat down next to someone I didn’t know, except I did – although I didn’t realise at the time – it was Allan (@Nyadach) who only a few days before had recommended some JDRF-coloured cycling shorts to me. Allan is quite an experienced cyclist, something he’ll need for his unaccompanied-Round-the-World-cycle-tour next year.
Within a few minutes I’d also met Rachel, Marianne, Steve, Suzi, Paul and many, many more. Then Sacha, Andrew, Jeff, Adrian, Lesley, Lis… you get the picture.

Drawing up the agenda

Midge took the stage and welcomed everyone to the event and explained how it would work: we all had pads/pens and we were to spend 5 minutes writing down topics we’d like to discuss that day.
Afterwards people were invited to address the conference and say what they wanted to talk about, at which point Paul wrote down their topic on the list.
Whilst we all had coffee Paul and Midge rewrote all the topics into an agenda for the day.

pwdc15 agendaThanks to Eva Palik for the use of her photo.

I wouldn’t say the day stuck to those times or even the agenda as some sessions merged to discuss other topics, others seems to focus on one part.

 

 
I’ll detail the sessions in the next post.

PWDC15, A Diabetes Conference for PWDs by PWDs

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Diabetes conference poster2015The dawn is rising on one of the most eagerly awaited days in the calendars of many people with diabetes (PWDs) in the UK, those that have been a part of the #GBDOC community for many years now, as well as people involved with Team Blood Glucose, who are sponsoring the event.

A little bit of history (as I see it)
#GBDOC was formed on Twitter by Paul Buchanan back in August 2012 and consists of tweetchats which have happened every week since then – Wednesday nights at 9pm until 10pm. The community goes far beyond the weekly chats and there’s now hundreds of PWDs who feel connected to a support group they’ve been missing beforehand and that’s a great thing.
Paul also created Team Blood Glucose with the mission statement of TeamBG inspires people with, and those at risk of diabetes to achieve their sports and exercise goals, to educate people with diabetes of the benefits of sports and exercise and to equip them with the tools to achieve their ambitions..

So why are we excited?
For me it’s simple, I don’t get invited to any of the ‘proper’ Diabetes conferences organised by Big Pharma or the big charities, so it’s exciting to actually get to go to one.
Actually though I’m far more excited about meeting many of the people I’ve spoken with online for a couple of years, some I’ve met before once or twice, some I’ve not yet met and some I’ll no doubt not recognise whatsoever today – people only ever pick their best photos for avatars don’t they?
The list of names is endless, Paul, Midge, Kaz/Max, Phillipa, Rachel, Steve, Paul S, Alex, Bob, Adrian and on and on but there’s one person everyone wants to see today, someone who through everything she’s gone through still makes us laugh everyday, someone who knows the benefit of this community, someone who’s willing to make a very big effort to get to this conference, yep, it’s Jules. It’s fair to say the highlight for many people today will be meeting Jules.

So what’s happening today?
I can easily answer that: I don’t know, no-one knows and that’s the beauty of it.
Today we will arrive, there’ll be an opening presentation or two and then the community will decided what happens for the rest of day.
I’ll not lie, this will be either mindblowingly brilliant, or erm, not. It’s probably the first time this has been done for any subject as part of an organised conference so we’ve got no history to learn from.
I have faith that this will work, the very loose format should mean that people get to do what they want, not what is dictated to them. At risk over over using a word today I think this is exciting.

A blooming big Tweetmeet
Many of you will know that wherever I go I will try and see any of my Twitter followers who are local as I feel it’s important. Mind you, I never get invited back, hmmmm, ha ha.
So if nothing else I am looking forward to a blooming big tweetmeet.

But I know it’s going to be so much more than that.

“Bringing up Children with Diabetes” #GBDOC Tweetchat – Questions

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gbdocI’ve taken part in many of the weekly (Wednesday night at 9pm) #GBDOC tweet chats since they started a couple of years ago, I enjoy them and generally get a lot out of them. A couple of weeks ago I got a message from Paul (@t1hba1c) who hosts the #GBDOC tweetchats who asked whether I’d like to host a tweetchat about bring up children with diabetes. I was initially reluctant: why would anyone want to listen to or answer my questions; there’s many more parents who with their eloquence could host a great tweetchat.
After a couple of messages between Paul and me I decided to do it and then proceeded to panic about what to ask. The easy solution was to ask other parents what they’d like to know so these questions are not just mine, they’re from a mixture of parents.

For the chat I’ll be using the following abbreviations:
PWD – Person With type 1 Diabetes
CWD – Child(ren) With type 1 Diabetes
PofCWD – Parent(s) of a CWD
Dx – diagnosis of type 1 diabetes
CGM – Continuous Glucose Monitoring, such as the Dexcom G4 Amy uses, gives a constant, slightly delayed reading of a PWD/CWD’s glucose level.
CGM-in-the-Cloud/Nightscout – a system developed by PofCWD which allows parents to view their kid’s current glucose level whether they are, many use a Pebble watch or iPad to view their kid’s CGM data. More info here.

First a couple of questions about work & relationships, not at the same time mind…unless you’re working late 😉

Q1a Employment: has having diabetes affected your employment chances? Did you change your career path/dream because of it?
One of the first things parents are often told at diagnosis is that it won’t affect their child’s career unless they want to join the Armed Forces. As time goes on you hear that people haven’t been able to become pilots, or paramedics and the list seems to go on. Some kids already have thoughts of joining the Army etc., then they’re diagnosed and those dreams stop. Did you dreams stop?

Q1b: Are there any ‘good’ or ‘bad’ jobs? (Thinking along the lines of jobs where it’s really hard to test or take a break)
I’d never dream of steering Amy towards a certain career path because she has Type 1 Diabetes, she needs to choose her own path, but it seems to me that there must be certain jobs where testing glucose and taking the odd break for treatment is a lot easier than others.

Next up, one of the worries for parents is about their kids having a happy family life.

Q2 Relationships: has having diabetes been a factor in finding/losing a partner? Has it caused issues in your relationships?
On many of the parents’ Facebook groups many talk about how their marriage fell apart after their child was diagnosed, blaming the stress from prising apart already existing cracks. Some worry that their child might find it difficult finding their ideal partner, although I believe the truth will out and Amy will have no trouble finding that decent guy (or girl of course).

Moving on to positivity, about kids attitudes and fear and confidence.

Q3 Attitude: do parents instil confidence or fear in their CWDs with things like overnight checking, CGM, CGM-in-the-cloud?
I often wonder whether my own personal paranoia and control-freakishness is instilling fear in my daughter’s mind rather than what I really want – for her to be independent. My interest in her using CGM has led to us all to expect it to be there every day and I can’t help but wonder if this is sending out the right message. Back in the day parents didn’t have these options and all the PWD I know seem to have grown up pretty well and turned into to great adults.

Q4 Positive clinics: How should parents go about teaching our kids to question their HCP’s? What are the important points?
Our Consultant is great, she rarely talks to us parents but instead talks straight to Amy and all about the soft stuff too, no focus on HbA1c as such. Amy though rarely thinks of any questions for her sessions as she’s happy with her care. I want her to be able to question the HCPs, learn from them, teach them so does anyone have any tips of how to achieve this?

The next question is whether or not it’s right to restrict things due to worries about the future.

Q5 Care focus: should our focus be the current or the future? What do you wish your parents did or didn’t do? Any wind ups?
The current or the future: I seem to have two choices, either make life easier for Amy now and not worry too much about her day-to-day levels OR be very involved in Amy’s day-to-day management helping her with basal/bolus management & set changes etc.. I choose the latter which I know can wind Amy up, but I do this to help her future as much as I can, hoping to minimise complications as much as possible. But which approach is right?
Am I right to steer her away from, or make her wait for, a carb loaded snack when her blood glucose is already quite high? Should I let her eat anything her friends eat?
Or am I right to try and teach her to minimise the food spikes going too high?
I guess many PWDs either wished their parents did less or more during their childhood. Any experiences you’d like to share?

If we get time I’ll ask this one.
Q6 Letting go: what’s the best way/age/time to hand over care completely? Do PofCWD ever fully let go? Did yours?
I tell myself that I’m learning all I can about Type 1 to help Amy’s future and to stop Amy having to learn all this, that I’ll educate her bit by bit and at some point let go completely. Honestly, I’m not sure I’ll be able to do that.
Have your parents ever let go fully? Do they still ask what your glucose level is occasionally?

Many thanks to @theGBDOC for the opportunity to host this tweetchat and to Rachel and Louise for helping with creating some questions.