World Diabetes Day 2018 and Blogaversary 6

wanw roller bannersIt’s been a year of changing pumps and a year of trying to change pumps.

It’s been a year of talking about #WeAreNotWaiting and a year of trying to talk about #WeAreNotWaiting.

Things are set to change quite soon.

It’s also been a year when Amy started looping, which is all just magical.

A few little things

Fundraising efforts for this year topped £14,000, for the team of 12 Diabetes Dads who were part of the London to Paris cycle trip I organised this year.
On 11th October I was proud to release the beta version of the T1Resources.uk Tech Dictionary, which I’d spent a few weeks creating. It launched to a lot of interest both by HCPs and PWDs – if you’re not sure what those acronyms mean then look them up in the dictionary 🙂
On its 6th birthday this blog has topped 172,000 views, despite its lack of posts this year.

Changing Pumps

OpenAPS rig Dean and pumpAmy’s had a few pump changes this year:
Vibe -> MM715/OpenAPS -> DanaRS -> Vibe -> DanaRS -> DanaRS/AndroidAPS -> Vibe -> MM715/OpenAPS
At the time of last year’s World Diabetes Day / Blogaversary blog Amy was using her trusted Animas Vibe pump, which at that time was 5 months out of warranty. We were waiting – ah, the irony – for the right pump to come along, for the right choices to become available.
After watching mine and Dana Lewis’s talk at Rise of the Machines Amy decided that she wanted to use a DIY closed-loop system, using OpenAPS. I’d had the pump since late 2016, sat in the draw waiting for Amy to decide she wanted to use it.
Within a week she was up-and-running with it and it was working well.
July saw Amy start her trial of a Dana RS insulin pump for 4 weeks just using the pump and its phone app to control it, then she used AndroidAPS with the pump for another two weeks. Unfortunately the first DanaRS broke on a Friday in France, so Amy wore her backup Vibe until the new DanaRS was sent to use on the Monday. The Dana RS trial was a success.
She went back to her Vibe for a couple of weeks before going back onto her Medtronic 715 and OpenAPS when she put her next CGM sensor on.

Trying to Change Pumps

danarrs_03In September 2017 we requested to see the DanaR pump, but with a DanaRS due to be released we decided it was be best to wait (!).
I don’t want to disclose all that happened but in summary, the team were (quite rightly) wary of a pump they’d never heard about, so it took some time to convince them it was worth looking at.
We had some – let’s call them – discussions which got to the point of the team thinking we would move on to another clinic. I responded with this, which became a turning point in the discussions: “there’s no way I want to consider moving Amy elsewhere, however I’m very passionate about her receiving what we consider to be the best available pump on the market“.
My key message to others in this situation is: your team have a duty to make sure anything they provide is suitable; PWDs and parents have a duty to make sure their voice/opinion is heard and respected; there’s rarely a decent reason for a patient not to get the pump of their choice; there’s a rarely a decent reason for a CCG to not go with a Doctor’s pump recommendation; it just takes time and effort.
Amy receives her new pink DanaRS on the 29th November.

Talking About #WeAreNotWaiting

fKFzL8we_400x400The day after WDD2017 Amy spoke at DPC17 in Olympia, her most important event so far, and alongside the lovely Philippa Cooper and Dr Sufyan Hussain.
This year, between us both, we’ve spoken at 10 events, to over 700 people.
Crikey!
Much of this is to HCPs which we do for one reason: so that it lets them know about what patients are doing so if one of their patients starts on it the HCP has a good understanding, which should help them support their patient.
The most recent one for me was at the Type1AndTech conference in Swansea last Saturday and if you’re interested the sessions were videoed.

Trying to Talk About #WeAreNotWaiting

Saturday’s Type1AndTech conference was a breakthrough, being the first time (I think) anyone has spoken about WeAreNotWaiting to an event organised by a UK Diabetes charity, namely Diabetes UK.
The landscape is changing, hopefully thanks to all the awareness so many in the UK, like us, are giving to organisations and HCPs.
Next Saturday my friend Craig will be talking about WeAreNotWaiting at the JDRF Leeds Discovery Day and I hope this will be the start of many events where PWDs/carers can talk about such technologies.

And finally…

I recently discovered this video again, it makes me laugh, a lot.

Dana RS trial conclusion – it’s the one Amy wants

danarrs_03Back at the end of July Amy went on a trial of the Dana RS insulin pump, a trial which was due to last four weeks, two of which we were on holiday in France.
The trial was successful, Amy has asked for the pump and whilst it’s not cut-and-dry her Consultant is very hopeful that her request will be approved.

Controlling the pump via the AnyDana-A 2.0 app

We had delayed starting the trial as we wanted to test the new Android app, Anydana-A 2.0, which can be used to control the pump totally, being able to do anything on the app you can do on the pump. At the the start of the trial (30th July) the app wasn’t released but three days later as we travelled through France we got the call from Tom, our DanaRS and Advanced Therapeutics representative, to say the app was live.
Within minutes the app was downloaded, installed and was talking to the pump.
Simple.

Wait, what, you used the app in preference to AndroidAPS?

Yep.
The important part of this trial was to trial the pump, its cannulas and general day-to-day wear, tear and usage. We don’t need to check whether AndroidAPS works for Amy because it’s based on OpenAPS and that works very well for her, plus other users have millions of hours of experience – not each, jointly – of OpenAPS and AndroidAPS.
That works, no question.

So then, the pump?

The pump, being one of the smallest and lightest currently available in the UK, was comfortable to wear, coming with a whole range of clips, holders and things which we’ve really no idea what they’d be used for.
All pumps have similar features and Dana RS seems to have all the ones Amy requires, plus she found the menus easy to use on the pump, then again that was only for the first few days until the app arrived.
Amy found the reservoir changes easy and the only downside is possibly that filling the reservoir is a little fiddlier than she’s used to BUT a major advantage is that she only has to change reservoirs every six days. Hmm, should I write that on a public page? Six days? She says she’d rather spend a few seconds fiddling with “that screw” (see below) if it means she can change reservoir less often, with its insulin wasting, looking-for-bubbles-time-consuming nature.
Big downside though: her trial pump was grey not pink. Euw, eh?

And the cannulas?

dana soft release -oThe rather funky cannulas caught Amy’s attention immediately, with their 360 degree spinniness and the ability to disconnect rather than rip-out during an inevitable door handle moment.
The cannulas worked well but did leave a raised doughnut shaped mark and we didn’t think about trying anything to stop that happening. After the trial finished we realised we should have contacted Tom as he had many suggestions to try, and even let Amy continue using the pump for a further two weeks until she ran out of cannulas. During that time she used Cavilon for the first time and that seemed to help.

So then, the app?

In the first week the app had a few display issues but the developers were really on it, responding to feedback and rolling out minor tweaks every day it seemed, updates which really slowed down as they ironed out the issues.
Using it was easy and I found myself saying to Amy at each meal time “have you bolused?” as I was used to seeing her pull out a pump, but that’s a thing of the past with this app.
Here’s a video Amy did to show to do a simple bolus, a combo/multi bolus and how to change a basal rate:

So then, “that screw”?

dana screw
A couple of people who used a Dana R – the RS’s predecessor – as part of Dr Hovorka’s trials have mentioned about “that screw”, which is part of the pump/reservoir, putting out negative comments which others mention as the reason not to go for a Dana pump. The problem for me as that the originators don’t make a big thing of it, others do, why? Anyway, the Dana pumps work differently and has a screw which clips into the reservoir – see this video for more info. Honestly this process takes seconds, if that, way less that other parts of the refill process.

AndroidAPS: wait, what, you used it?

For the actual trial I didn’t even look at AndroidAPS for Amy, but after Tom suggested extending the trial I just went for it.
Within an hour or so the software was all installed properly on her phone and she was offline closed-looping.
And. It. Is. Brilliant.
It’s so easy to set up, it is offline from the word go and most importantly Amy can configure it all herself because it’s on her phone. She would technically have been able to configure her OpenAPS too but that would involve more faff than she was interested in doing.
Take a look at this time-lapse of 5 hours of AndroidAPS in 60 seconds. Keep an eye on the temporary basals shown in blue, especially the area the vertical dashed-line goes through.

Insulin pump trial – Dana RS

Amy’s been using #OpenAPS (closed loop artificial pancreas system) since March and it’s been working very well, with some impressive results such as waking up in range without fail and without intervention every morning. Her set up includes a Dexcom G5, her phone (Xiaomi 4X), her OpenAPS rig (Edison/Explorer) and a 10 year old Medtronic 715 insulin pump. The only real issue we’ve had is bluetooth connectivity which we’ve resolved very well.

So, OpenAPS is excellent and gives great results, but Amy’s pump is six years out of warranty already, might possibly break at any moment (unlikely) and the backup pump (Medtronic 712) is even older than the primary one. The dwindling supply of loopable old Medtronic pumps makes me nervous so for a while now we’ve been looking at alternatives.

danarrs_03Say hello to the Dana RS. A brand new insulin pump which can be used with AndroidAPS – which is based on OpenAPS code – and most importantly retains its warranty even if being used for DIY closed looping. AndroidAPS runs on an Android phone and communicates directly with the CGM source (Dexcom G5 in Amy’s case) and the Dana RS pump, no other hardware is required and most importantly there’s nothing which needs charging or could be forgotten when leaving the house each time. The potential to control the Dana RS using an official phone app from an Android phone (or iPhone if you really must 😀 ) is a great step forward, although its unlikely she’ll use this when she’s wearing CGM as AndroidAPS will be controlling everything. It is the only pump to allow full control via a phone: setting TBRs, doing a bolus, altering settings.

It’s taken a while to get here: I first mentioned about the Dana pump at clinic in September 2017 – back then we were talking about it’s predecessor the Dana R. I won’t go into detail but it’s been a slow process of discussions with Amy’s team to get to a point where they are happy for Amy to trial the Dana RS pump with a view to it becoming her new pump. It’s not a pump they knew about so I can fully understand any concerns they have but (I hope) they came to realise that we knew a lot about it and were confident it was the right pump for Amy at this point in time.

Back on the 12th July Amy got to see the Dana RS for the first time, she was excited. Tom, the Dana rep from Advanced Therapeutics, demoed the array of holders, pouches and holsters which pleased the girl who’s missed the trusty clip of her Animas Vibe pump. She was most excited by the 360 degree cannula which spins, hopefully meaning less kinked tubes and less pain during the inevitable moments when tubing meets door handle. Yesterday Tom came to our home to train Amy in everything, with us parents taking a real back seat, and within an hour or so she was up and running.

Day 2 has started, she’s alive, we’ll call that a win.

The trial lasts one month so we’ll keep you updated. We have no plans to involve AndroidAPS in the month’s trial but I’m not sure whether we’ll stick to that.

To see more about what you get in the kit and find out more about the Dana RS take a look at Andy’s Dana RS kit blog.

London/Paris Fundraising – Win a Dexcom G6 Starter Park

The raffle is now closed, the winner was Claire Reidy

Here’s a video of the draw being done…

eiffel and us before finish

Introduction

Us Diabetes Dads had a great ride to Paris, we’ve been back a few weeks now – yes, yes, I’ll do some videos soon. Hopefully some of you managed to follow the fun on our Facebook page – London To Paris Diabetes Dads.

Fundraising went so much better than we expected, topping £13000 so far – thank you, thank you, thank you – but we’ve got something left before we close the fundraising down…

Dexcom has generously donated a starter kit for the brand spanking new and shiny Dexcom G6, which 900 of us UK people saw this week on Dexcom’s release webcast.

If you’ve already donated to our ride already you can still enter this raffle.

What’s the prize and how much is an entry?

Up for grabs is one Dexcom G6 starter kit worth £159 (exc VAT), which consists of one G6 transmitter and three sensors. It’s enough for you to trial G6 for 30 days if you use it continuously, or 3 lots of 10 days if you don’t. The transmitter will last longer if you decide to buy more sensors afterwards.
The G6 is a vast improvement on any previous Dexcom product, and let’s face it they were pretty damn good. It doesn’t need calibrating, it lasts officially for 10 days, it’s slimmer and its inserter doesn’t scare the daylights out of you.
Entry is £5 for one chance. If you wish to have more chances you can – just like you would when buying multiple raffle tickets – you just need to donate multiples of £5 when you enter.
DexcomG6
(Note: it’s only the transmitter, the sensors and the inserter you get, no phones, no watches)

 

How do you enter?

NOTE: This is open to UK residents only.
Read all this stuff below then head over to our ride’s JustGiving page to enter, see link at bottom of this section.
On our Just Giving page donate £5, or multiples of £5 to get more chances.
Make sure your name is correctly set up, so that we can announce the winner in July.
DO NOT SELECT GIFT-AID.
You will need to go back to the JustGiving site on 20th July to check whether you’ve won.
IMPORTANT:Please let me know you’ve entered via Twitter or message me via Faceboook.
Okay, now click this link: A Dozen Diabetes Dads Do London to Paris

When is the draw and how will it be done?

After the World Cup finishes we will collate a spreadsheet of people who have donated a multiple of £5 between 16th June 2018 and 15th July 2018.
If you’ve donated £5 you’ll get one line in the spreadsheet, if you’ve donated £500 🙂 you’ll get 100 lines in the spreadsheet.
The winning entry will be chosen by placing each entry into a bowl and chosen at random.
The winner’s name will appear on the Just Giving site and here once the draw is over, details should be published by 20th July.
PLEASE COME BACK TO CHECK WHETHER YOU’VE WON AS YOU WILL NEED TO CONTACT US TO GIVE US YOUR FULL CONTACT DETAILS.
We will pass the details of the winner to Dexcom and they will contact the winner to arrange delivery of the shiny new G6 starter kit.

Here’s some raffley legally stuff

This online ‘raffle’ is legal because JDRF now hold a Small Society Lottery registration with their local council, Islington, it’s reference LN/18477-100518 if you’re interested.
To be honest it’s taken us ages to get this licence, and we’d wanted to do this ‘raffle’ before we rode to Paris but getting it right (and legal) was important so we just had to wait until now. But as a bonus the offer is now for a G6. Woohoo.

Here’s an incredibly important disclaimery type thing

Dexcom has provided us with this chance to increase our fundraising.
They want nothing in return and never actually expected us to be in a position to raffle it online, but now of course they’ll get a little marketing in return, but that’s not something they expect.
Kudos to Dexcom for helping us with our fundraising and special thanks go to Gerald and John for helping us.
Dexcom has also giving us this opportunity knowing full well that half of the Dads on the trip as Nightscouters. It’s refreshing we’re still friends and can talk openly.
33683908_1662174733829712_7420630583182622720_n

London to Paris with the Diabetes Dads – A Suitable Momento

Fields of goldI’m always fond of having a souvenir of somewhere I’ve been, something I’ve done and I prefer it when that thing is practical.

Clothing is often a favourite and I was made up in 2015 when I managed to find a London to Paris cycle jersey but I’ve put on far too much weight to even think about wearing it again and arguably it never fitted anyway.

With 12 Diabetes Dads doing this trip I wonder if it was possible to get something made, something personal whilst practical at the same time.

Cycling jerseys and shorts were out, the quantities you’d need to order to make it worthwhile were too high and we’re all different sizes – although it appears we’re mostly in the XL and XXL categories…and that’s before they wine, cheese and baguettes we’ll be consuming.

Taking one look at my now aging water bottles the idea came to me, could we get some bottles custom made, with our own design?

Well yes, we could, so we did. Et voila.
water bottle3

Suppliers, Quotes and Costs

I searched the internet, got a few quotes and decided to go with Bottles & Bags, a small family run business specialising in this sort of thing. They’ve lots of different bottle types, sizes, colours and after a few chats with Caroline from Bottles & Bags I got a fixed price for the Gripsport 750ml bottles with one print colour and delivery for a shade under £210.
If we wanted a second colour it would be another £30 on top, for three it would another £30 on top of this. So in the interests of keeping costs low I opted for a single colour, the JDRF blue, printed on translucent bottles.
It’s possible to select different colour tops and you can mix and match within your order. One of them closely matched the JDRF blue too which was perfect.

Designing a template

I still like the header design of my London to Paris Cycle Ride web site, especially the blue skyline silhouette so I wanted to feature this. I wanted London to Paris 2018 in there and the JDRF logo to take center stage.
Bottles & Bags supplied the template with the instructions that it has to be 300DPI and its print size should be 140mm wide by 110 high maximum.
To do this I used the free graphics software GiMP.
This was the final design, although in the end I chose to get the printers to match my logo colour to the pantone colour of the blue lids they had, I think it works out well.
Bottle - blank background

Still too many bottles

Even 50 bottles was too many so after a chat with JDRF I offered some for sale to members of the Cycling @ JDRF UK Facebook group, at a slightly inflated cost of £5 a bottle – any excess will of course be put into the Diabetes Dads London to Paris fundraising pot. At least this means that all the Dads don’t need to have four each…although I’m so excited by these I’m having four.

Can you spare a pound or two?

If you can spare a few quid you can help us raise money for JDRF UK using this link: https://www.justgiving.com/fundraising/diabetes-dads.
Or donate by texting DDTP50 £1 to 70070. You can change the ‘£1’ for any amount, e.g. ‘£1000’ 🙂

London to Paris with the Diabetes Dads – 5 weeks to go

Bottle - blank background
The logo I’ve designed for the event water bottles

A few years ago I helped get a large team of Diabetes Dads – Dads with kids who have Type 1 – together to ride the London Nightrider. Around 30 of us rode, raising £20k for JDRF. It was a great night.

This year twelve of us are riding from London to Paris, starting on the 24th May from JDRF’s offices in London, through to the Trocadero in Paris which we’ll (hopefully!) reach 4 days later. Many hardcore cyclists would do this in less days but this will be a social ride, discussing diabetes, our kids and tech. Plus there *may* be stops at the odd auberge.
The ride will be unsupported much like the ones I’ve done in 2015 and 2016. If you’re thinking of doing something like this yourself check out my blog at london-to-paris.winchcombe.org.

It’s 200 miles, 65 miles for days 1 and 2, 35-40 miles for days 3 and 4.

How fit do you need to be

This isn’t something only the uber fit can do, you just need to train. Like most of the team I’ve started from nothing, no regular training for months before starting training for this. Starting at 10 mile rides and now happily at 40 mile rides, a few more training weeks should see me able to complete the event.

Getting fit is hard

Many of my friends think that I cycle all the time so this ride will be easy, but prior to starting training I’ve not cycled since last year’s Nightrider in June 2017. I’d forgotten how quickly you lose fitness and just how hard it is to get it back again.

Fundraising is hard

I’ve not done any fundraising for a couple of years but times are tight for many and I’m finding fundraising really hard at the moment. I think I’m suffering from this challenge being no harder than the last one and that people think this will be easy for me, it won’t, I’m no weekend-warrior-cyclist, those hills and that mileage really take its toll on my still-in-their-forties-just legs.

Training not walking

It seems like I’ve been waiting for the warm days – like today – to appear and I never realised how much of a fair weather cyclist I must be. It’s time to stop talking about the ride and get out and do some longer, decent training rides over the South Downs.

If you can spare a few quid you can sponsor us using this link: https://www.justgiving.com/fundraising/diabetes-dads
Or donate by texting DDTP50 £1 to 70070. You can change the ‘£1’ for any amount, e.g. ‘£1000’ 🙂

#DUKPCInsider conference: hopefully the first of many

Yesterday I attended the first ever Diabetes UK Professional Conference (DUKPC) Insider conference, a spin off from this year’s annual 3 day professional conference which is open to only healthcare professionals (HCPs). The Insider was specifically for people with diabetes (PWDs) to attend.

TL;DR
Diabetes UK held an event for people with diabetes (PWDs) to hear some of the presentations held at their 3-day professional conference.
It was great.
I hope it’s the first of many

A bit of backstory

A few years ago no PWDs really attended the DUKPC, then Diabetes UK had the foresight to invite some lucky PWDs/carers who tweeted and blogged lots of information from the conference. This was great, there was such an appetite for the information.
For the following few years 5 PWDs/carers attended the DUKPC as winners of a bloggers competition and they all did a brilliant job of getting information out to us PWDs and carers.
This year, typically the year I was going to enter the bloggers competition for the first time, Diabetes UK decided to hold the Insider event, with the aim of effectively allowing 250 – not 5 – people to attend.
It was a good decision Diabetes UK, bravo.

Even the weather couldn’t stop us

180317, Kev explaining OpenAPS on the trainWith forecasts of a mini-blizzard hitting London I did wonder whether that one snowflake would mean all roads would be closed towards London, but I set off at an eye-blearing-6am, picking up my friend Anna on the way.
Once in London it wasn’t long before the inevitable PWDs-on-the-same-train happened, with Steph capturing me explaining Amy’s #OpenAPS to Anna.

Even the weather didn’t make us Grumpy…well maybe one

I couldn’t miss out the fact the DUKPCInsider gave me the chance to meet Chris, aka GrumpyPumper, for the fist time. I’ve known Chris for around 6 years now and somehow we’ve never found ourselves at the same event, which is remarkable as between us we’ve probably got them all covered.
It was a pleasure to finally meet the man who cheers up twitter when it’s down.

Wow, what a programme

The programme for the event was great and I was particularly pleased to see the calibre of presenters. Us Insiders heard from some of the most brilliant Doctors and Professors, the people at the top of their field.
The opening plenary from Professor Hattersley was outstanding, telling us all about the many types of Diabetes, told to us in a way that could be understood by the likes of me with my one O-level grade C in Art.
I’m not going to go through all the speakers sessions but each and every one was excellent and I felt privileged to be able to listen to them.

I can’t not talk about the tech though

180317, Pratik shout out to WeAreNotWaitingIt’s always a pleasure to listen to Dr Pratik Choudary speak, I love that he understands that achieving 100% time-in-range is an impossible dream for most, that 80% would be fantastic and that even his working pancreas doesn’t stay in range. I love that Pratik let’s his patients know about tricks he reads from PWDs tweets on Twitter.
I found myself nodding along in agreement with all his slides but couldn’t contain my happiness to see the slide on the right.
Later it went one stage further when in Dr Helen Murphy’s session about artificial pancreases she spoke about what the patients are doing and spoke about #WeAreNotWaiting and #OpenAPS again.
It so lovely to hear how much respect clinicians have for patient-led things. Bravo.
After Helen’s talk I went over to thank her and I was bowled over by everything she had to say about #OpenAPS’s closed-loop AP.
In the panel at the end #OpenAPS got another nod, this time from everyone’s favourite doctor on Twitter, Dr Partha Kar, when asked about the future for diabetes.
Three times in one event, I was honestly so surprised, and pleased.

A plea to Diabetes UK

Please, please run this event again.
With the conference being in Liverpool it will give the opportunity for many different people to be able to attend.

A final thank you

To Robin, for your talk about stigma and language, and inevitably one about Park Run which I thoroughly enjoyed. But thank you mainly for your tireless efforts to help bring events like this to fruition.

And finally

Having spoken with Chris Askew, Diabetes UK’s CEO, at the event I know Diabetes UK have ideas on how to further expand knowledge sharing. I’m really pleased to hear they’re looking at this.
I do think there’s scope for having a bloggers competition and the Insider event together and I hope they consider this for next year.

The road to Amy’s DIY closed loop artificial pancreas #OpenAPS

Day 6, nicely in target

TL;DR
I built Amy a closed loop artificial pancreas
She’s been using it for one week so far
It’s great

 
After getting into the world of #WeAreNotWaiting and Nightscout, I followed with great interest the progression of OpenAPS, a do-it-yourself closed loop artificial pancreas. I read the posts by Dana Lewis and Scott Leibrand with awe, wondering whether closed-looping would ever be something Amy might want.

If you’ve not heard about OpenAPS you might want to do a little reading first. In essence a matchbox-sized computer reads CGM data, figures out what temproary basal rate (TBR) could be used to help get levels on target and tells the pump to do the relevant TBR. If you’re worried it’s not safe, think again after reading this.

Back in October 2016 I decided I should gather the necessary kit together and should Amy ever want to close loop I’d be in a position to help. I’d need an old Medtronic pump, an Intel Edison chip and an ‘Explorer’ board. I sourced my first pump from eBay, it was no good, it was dead. The second was better and usable but I sourced a better third one, a 715, which I got from the Netherlands after asking all the right questions and requesting videos of it working.

I let Amy know that I had the kit should she ever be interested; she wasn’t. All the kit sat in a draw patiently waiting in a box adorned with a #WeAreNotWaiting sticker. Oh, the irony.

Last November I went along to a DIY closed-loop artificial pancreas build event hosted by the UK looping commmunity’s Tim Street, a tremendous driving force behind helping others to close the loop themselves, or understand and learn about it, or understand many different things about diabetes, plus he’s written a great guide to closed looping.

I had no intention of building anything but I went for the chat and to see what was happening, but I took my kit pieces with me. I came home with an almost working closed-loop artificial pancreas!

Amy seemed more interested now she could see something working.

Amy wasn’t using CGM at the time but my friend Alasdair let us use his CGM data from his Dexcom account to help me test, test and test the rig I’d built. It was working tremendously well, I watched in awe is it made the temporary basal rate changes which were sent to the pump – containing water and not attached to anyone.

A couple of weeks later my friend Craig gave us a G5 transmitter to help continue testing which I wore, along with the 715 pump pumping water for a few weeks. Thankfully my phone using xDrip+ worked well to collect the Dexcom G5 readings and my CGM trace was illuminating, a ‘normal’ person’s glucose line certainly isn’t flat, especially after eating my nemesis which is clearly bread.

OpenAPS rig Dean and pumpIt still wasn’t the right time for Amy, so I waited, applied no pressure and just hoped one day she’d ask to use it.

That day happened the morning after the Rise of the Machines event when Amy watched the presentation videos of me and then OpenAPS’s founder Dana Lewis, whom I had the great pleasure of introducing to Amy only a couple of days earlier.

Roll on a week and Amy went live on her rig ‘Dean’ (Supernatural reference) which tells ‘Castiel’ (the 715 pump) what to do. It’s been a full-on learning week, with tweaks here and tweaks there.

We started cautiously, setting the target range to 7.0-7.5 mmol, something we’ll drop later when Amy’s feeling more confident. It’s doing very well and every morning is like this:
Day 6, nicely in target

It’s already offering an improvement to less time spent hypo, or rapidly changing BGs, or standard deviation. More importantly Amy is having to make less decisions, or reactive actions. It’s important to remember this is the end of week one with a target set to 7.0-7.5, so it’s easy to see how A1C – if that’s what you’re worried about – can be lowered by dropping the target range.
Distribution, day 8 for 36hrs

Diaversary #7 – A New Chapter – Amy’s boyfriend’s honest thoughts

Amy and her boyfriend, Kalvin, have been together for six months today so it seemed fitting that he was offered the chance to write this year’s Diaversary post.
These are (16 year old) Kalvin’s honest and open thoughts on what Amy’s diabetes means to him, how it’s affected him and how he sees it affecting her/them.

Anyway, over to you Kalvin.

Amy and Kalvin

I met Amy on NCS six months ago. I found out she had Type 1 almost immediately. Naturally like everyone else, I didn’t really understand what it was, the dangers and just any of it really. Diabetes is definitely confusing. Take it from me. I have been Amy’s boyfriend from nearly the first day I met her – don’t ask, it wasn’t one of those cheesy ‘love at first sight’ moments you see in films.
Even with diabetes, everything she has achieved and is able to achieve today is remarkable. It just proves that it doesn’t have to be the end of the world for anyone. It’s simply a new chapter.

My first hurdle with Amy was NCS itself. On our first week together, the sudden realisation that diabetes was definitely real and definitely impacting her hit me like a truck, as it had certainly hit her on day two. Day. Two. I found out that morning that Amy’s levels had supposedly dropped below one. Thankfully, they hadn’t and it was a simple tech glitch, but her levels were dropping that night and if no one had intervened, well it’s something I don’t like to think about. The rest of NCS was just perfect. I know, it had only been a few days and suddenly I was a part of her life. Getting to know her, getting to know what life was like when she was younger. It definitely impressed me how well the family had managed it after seven years.

I knew that Amy would be having a holiday in India that summer. What I didn’t realise is that they would be gone a month. It’s this kind of trend that’s been worrying me throughout my time with her. Completely fearful, rushing at every moment I got to text her, make sure she was still there. The scare during NCS had and still makes me paranoid that something could happen.
Maybe it’s because I don’t know what its like. Kev and Jane, (her parents, though I doubt you’d have made it to this page without knowing who they are), have been forced into making sure she is okay. From what I’ve read and seen, they do a brilliant job at it. Yet I still worry that something could happen to her. If something happened when we were in public, what would I do? It’s all been a rush for me. A constant flow of information, trying to learn and keep up with what they know, what to do if her levels drop, how to make sure she is okay at all times.

After India and finally being able to relax a small amount, I knew that I would rarely be able to see and know for sure she was fine. With me working weekends and both of us just starting college, we were both gonna be super busy all the time. I wouldn’t be able to see her as often as I had over the summer, excluding the month away. I can remember one night where I didn’t sleep. I couldn’t. Just in case she called and something was happening and she needed me. There were too many what-ifs.

I found out about this blog a few months back. It has been an absolute gift. I know Amy so much better now and I know the condition slightly slightly more now, even if I still get confused with bolus. If you’re new to this whole get-up, you’ve got to do your reading early, else you’ll be a nervous wreck like me! And no one wants that. Probably.

Not really much has happened since then. My sleeping has got better now I’m more comfortable with the risks. I don’t get completely terrified not knowing what has happened that day. Amy has certainly been a wake-up call for me to care about others as much as myself, and in her case more. I’ve learned so much from their family. The best advice I can give is to listen to every word that you’re told because the family of a diabetic girl is very, very smart when it comes to it. Anything I need to know/want to know/will probably be useful to know if I need to do emergency things can be told to me whenever I need to/want to/should hear it.

At the end of the day, I would give anything just to make sure she doesn’t have to do another set change, or give herself insulin for a meal. I would take her place in a heartbeat. I don’t want to think about what could happen, what nearly has happened.

Amy – I can’t wait to see you this time next year. Who knows what the future holds for you?

Standing on her own two feet (at DPC2017)

Amy DPC1
As a parent you sometimes get a wake-up call that your job is done, that your child no longer needs your assistance in one area of their life. Be it walking to school, going to the cinema or shopping, catching the bus or train, or managing their Type 1 diabetes.

I’ve never been a fan of the they-need-to-deal-with-this-themselves-now-they’re-XX-years-old school of diabetes management, after all Amy’s got enough years of having to deal with Type 1 by herself ahead. We’ve always been a team, starting from when us parents did most of her care post diagnosis, to now where we do very little with her day to day management. There’s days when we never ask if she’s done a BG check, or how her levels have been, because we know she will have done them as she sees fit, and we know she will have changed her insulin pump set when needed. Now that she’s riding a moped the importance of BG management has been raised higher, and knowing the rules of checking/driving/hypos she manages this well too.

Disclaimer

Before reading on can I just apologise if this appears to be a bragging post, it is, I can’t help it. Sorry…not sorry.

DPC2017 – the Diabetes Professional Conference

Thursday 16th November marked another moment of realisation. Amy, aged 16, stood in front of a room full of health care professionals (HCPs) at Olympia as part of the Diabetes Professional Conference 2017 (DPC2017). She told them why she loved her insulin pump, how it had changed her life, how it had given her more time in the day, and most importantly how it helped her cope with life with Type 1 and a fear of needles. She stood there proudly showing her pump.

Amy DPC2She’d done similar stuff before, she’d spoken in front of 200 HCPs twice before but then the answers she gave were very short. She’d presented Nightscout and WeAreNotWaiting alongside me to Directors at JDRF and Diabetes UK, and to the team at Oxford. DPC2017 was different, as she stood there – alongside my friend Philippa and Dr Hussain – she answered Dr Hussain’s questions, elaborating on them with anecdotes and telling stories about school life, German exchange trips and the difference between two holidays in India, one on MDI, the next one using an insulin pump.

During ‘Any Questions?’ one HCP asked Amy about CGM and Nightscout – as that information was on the slide being shown – asking her how it helped. For me this was the epiphany, it was unscripted but Amy answered well, going into detail about how we used Nightscout to help with her GCSEs and how she felt it was a safety blanket to support her own management.

Thinking back to diagnosis I can’t imagine we’d ever have thought she’d be where she is now.

DISCLOSURE
No payment other than travel expenses was received.
Amy did receive a mahoosive feeling of satisfaction though.

Global Diabetes Day 2017 and Blogaversary 5

Okay, I know, it’s really World Diabetes Day but for reasons which will become clear later I’m calling it Global Diabetes Day this year.

It’s been in some ways a busy year, in some ways a quiet year, since 2016’s World Diabetes Day blog.

bannersIt started with Amy and me presenting Nightscout, WeAreNotWaiting and DIY artificial pancreases to the team at Oxford in January and ends (almost) with Amy presenting with Dr Sufyan Hussain at the Diabetes Professional Conference 17 at Olympia this coming Thursday and me lecturing at South Bank university a few days later. I’ve been really pleased to meet so many teams and HCPs who want to know more about what patients are doing and one day, who knows, I might actually feel comfortable presenting. Nightscout UK had a great weekend at the Children With Diabetes Friends for Life conference in October where we used for the first time the roller banners I created. October saw Amy and I attend the QiC Diabetes Awards which I helped judge this year, walking away with a Winners trophy for T1 Resources and collecting the People’s Award trophy for my friend Sarah Davies who works tirelessly supporting families and adults who are using Nightscout.

Enough about us, and back to Global Diabetes Day.

On Saturday I went to the premiere of the #T1DGlobal17 video, a day for people with diabetes and carers, organised by Gavin Griffiths, who had been sponsored by Sanofi Diabetes to visit lots of different places around the world, chatting to T1 groups and doing some exercise classes and events with them. Saturday saw the premiere showing of the film of that trip but Gavin made the day much more than that, including multiple panels of people discussing different topics. I was astounded at the work being done by all (Chris, Bri, Sara, Shelley, Rebecca) but the standout for me was Jacq for the amazing work she has done with DWED (Diabetics with Eating Disorders) for people with Diabulimia, a condition some few have heard about but a condition that as a parent of a teenage daughter with Type 1 I have previously worried about.

diathletes

The best part of the day for me came later when Gav’s League of DiAthletes took the stage, each one telling us what life was like for a person with Type 1 in their countries of Ghana, Kuwait, Pakistan, Brazil, Costa Rica, Australia, Ghana and the Republic of California as Gav liked to call it. The stories range from good to bad but they had one thing in common: the work being done by the people for the people was amazing. Communities pulled together to help others live their lives. The world is a much better place because of the likes of Fred, Mohammad, Sana, Naty, Dani, Paula, Lucas, Nikki and of course Gav.

It made me think a lot, it was very humbling.

Here we are looking at which insulin pump Amy is going to get next, arguing for the pump we want rather than what the clinic have offered, having the options to try the latest insulins, deciding whether Amy prefers this cannula or that, this meter or that, this insulin or that. We moan about not having funded CGM, or currently the lack of CCGs funding Libre. At no point ever have we faced the issues that any of the League of DiAthletes face every day. We don’t need to fight for anything that Amy actually needs – not wants – to live. We are very privileged to be in this position. We are very privileged to have the NHS.

And that leads me on to one of my favourite speakers from Saturday, Elizabeth Rowley who runs T1International. Elizabeth, wearing her t-shirt emblazoned with ‘Access to Insulin is a Human Right’ spoke about the fantastic work T1International is doing, about their work with the #InsulinForAll movement which has always been brilliant but even more so now with the crisis our friends in USA are facing with the cost of their insulin, a so-called rich country where people can’t afford insulin. It’s mad.

Us Type 1 Cyclists* Need Your Support

Imagine…
Your day started as early as 4am as you made your way to Olympic Park for the start of the Prudential Ride London 100.
Your nerves and adrenalin were sky high as you set off from Olympic Park amongst 25000 riders.
You’ve been riding for hours, mostly without a break.
You’ve conquered the biggest hills in Surrey – Leith particularly is a killer
You’ve already ridden 85 miles.
Your legs feel like they’re made of something-marginally-lighter-than-Lead.
You really need a boost to get you through the last 15 miles to the finish line on The Mall.

RL100JDRFAnd then it happens.

You turn the corner and there they are, the supporters from Diabetes UK and JDRF, they’re there just for you**
Twice I’ve done RideLondon and both times I’ve received such a boost from the supporters. And isn’t it nice that Diabetes UK and JDRF all stand together, united in cheering their riders on, united in finding a cure.

Of course Kingston isn’t the only place. I really got a great boost from being cheered on by one of JDRF’s Directors whilst nearing the top of Newlands Corner. Kingston though has one great advantage as you can see the riders on the way out to Surrey in the morning and on the way back.
In 2015 JDRF’s Beki encouraged me to carry on cycling.

And here’s the time I tried to high-five Phillipa in 2015 – that probably wasn’t my best move, I was lucky not to hit the railings.

So, I wonder if I could ask a favour: if you’re near London on the 30th July could you go and support all those cyclists doing the Prudential Ride London 100 for either JDRF, Diabetes UK or DRWF (Diabetes Research & Wellness Foundation).
The supporter point is here (near TK Maxx) and riders will be going through from 7:00 through 16:00 I guess – I got there by 10am.

I’m sure if you do go you’ll have a great day out too.

Here’s my video from my 2015 ride…if you’re really bored.

*I’m not a cyclist who has Type 1 themself, but I ride to get sponsorship to be put towards helping people with Type 1 Diabetes. And I’m not actually riding RideLondon this year either 😀
** Okay, maybe they’re there for others too but at that time it feels like they’re only here for you.

Type 1 and the NCS residential

ncsNCS is the National Citizen Service, a four week programme for school leavers which provides a great opportunity for helping people, self improvement, making new friends and most importantly having great fun. In some ways it’s replaced the Duke of Edinburgh scheme as a must-do for teenagers who want to challenge themselves and improve their CV, and it’s easy to see why as it’s normally done in the summer they leave school, bringing a welcome relief to the stress of sitting GCSEs.

Want to skim this post?

My take home message from this post is that NCS is great, Amy loves it.
Yes we had quite an issue with Amy’s glucose levels whilst away but NCS managed it brilliantly, we couldn’t have asked for a better response and resolution.
Most importantly, Amy is having one of the best times of her life – yes, even better than when I took her to see MY favourite band at a gig – I know, right!.
Diabetes didn’t stop her going, it was a bit of a pain in the arse to be fair but she’s done every single activity with 100% determination and effort.
If you want to read about the incident and how NCS dealt with it skip to the ‘Worst night ever…’ section below.

Never a doubt

Amy doing NCS was never a doubt, from the moment she heard about it she wanted to do it and we’ve supported that choice all the way. There were no real worries about Type 1 Diabetes causing her an issue and on reflection we as parents have been incredibly relaxed about it. In all the application process and meetings we’ve only asked one question of the team: “do you have a fridge for spare insulin”. They did, but it wouldn’t have mattered what the answer was, we were just interested.

A whirlwind few months for Amy

Amy Prom (44 of 44)Amy’s spring and summer is a whirlwind.
First came the GCSEs (and the buckets of revision beforehand), then finishing school, then Prom, then three days later her NCS programme and its first week residential.
After NCS finishes she’s got a weekend to pack for our month in India, then two weeks after returning she’s off to college.
Because that’s not fulfilling enough she’s planning to do a tandem skydive in those “relaxing” two weeks. She’s saved her own money, she’s doing it by herself.
Maybe I need to rethink my “make your summer count” suggestion last year.

A little preparation for the residential

With our mind focussed on our summer trip to India we didn’t pay NCS preparation much time. Everything we were gathering for India was reduced and put into Amy’s suitcase, including pens+needles (which haven’t seen the light of day for years) and all the spare batteries and spare meters. We even put in a spare insulin pump just in case.
Normally when we go away as a family we forget certain things but it doesn’t matter because armed with a prescription, a credit card, internet on our phones, time and a car we can resolve most issues. Amy didn’t have the luxury of the last three so we had to make sure she had everything she might possibly need.
We’d informed NCS about Type 1, something they were well versed in already, and that was pretty much it. As far as the residential was concerned Type 1 wasn’t a thing, to us, to them, to Amy.

The insulin pump warranty situation

My slight worry about Amy’s residential was that she’s had her insulin pump for just over four years which means the warranty has run out. Whilst we can easily get her a new one we’ve chosen not to, until she decides which one to commit to for the next four years.
So that’s an out-of-warranty-will-not-be-replaced-if-it-dies insulin pump and activities like surfing, Total Wipeout and perhaps the most worrying for the pump, coasteering.
Gulp.

Week one excitement

NCS’s four week programme starts with a residential week away doing lots of activities on a daily basis. The first adrenalin-rush activity happens when the kids are dropped at the departure point and they get to meet everyone else for the first time, a brand new group of people and a week away from home, it’s a first for many as it was for Amy.
 

Worst night ever, NCS and Nightscout save the day

I don’t want to dwell about the situation on Tuesday night which at one point felt like the worst night anyone could have, but I know some parents of kids with Type 1 might be worried about how NCS themselves might deal with an issue…so…
Amy is currently wearing Dexcom CGM and using Nightscout, which means her glucose levels can be remotely monitored. I don’t monitor them but I wear a smartwatch which wakes me up if her levels become worrying.
I was woken at 00:30 on Wednesday, I looked at the CGM graph on my phone and waited. The numbers dropped further, and further and further still, way below the minimum number of 4mmol.
Eventually I texted Amy who was asleep and never woke.
smsI watched numbers in their 2’s appear, then 1’s.
I tried calling Amy, she didn’t wake.
I was confident this was a CGM calibration issue but I couldn’t just bat it off and do nothing.
Feeling sick and with tears in my eyes I eventually and reluctantly called the NCS support line and woke up Danny who calmly listened to my clear message of what I needed him to do (contact the leaders, wake Amy, check glucose level, give glucose probably).
Danny took control, contacted the leaders who were with Amy and did everything as instructed.
At 01:52 I got the best text message in the world, it was Amy who had just been woken up by the leaders. She was okay, after a glucose check she was 3.8, the whole thing was a calibration issue.
Throughout this time Danny had stayed awake, he hadn’t just passed on the info and gone back to sleep. He texted me to let me know Amy was okay and checked we’d been in contact.
Three leaders were awake with Amy throughout.
Amy had treated the hypo and was keen that the leaders’ night shouldn’t be disturbed and at 02:15 everyone went back to sleep, everyone except me as I couldn’t shake the sickness in my stomach. I just sat and stared at the Nightscout screen for 5 hours.
BG NCS

 

Remote monitoring, friend or foe?

On hearing the story one friend suggested it might be better not to know about the glucose levels.
My response is simple: By the time she was woken Amy was hypo and after (over)treating that hypo she dropped another 5mmol before over 4 hours. If I had not been woken up this real situation would have happened as early as 30 minutes later.
Everyone would have still been asleep, she wouldn’t have woken up, maybe ever.
Remote monitoring saved the day, without a doubt.

Diabetes Dads do Nightrider (again)

CaptureOnce again some of my Diabetes Dad friends and I rode in the London Nightrider, as we did last year when we had a huge group. Whilst the group wasn’t so large this year a good few thousand pounds was raised by the other Dads. I didn’t raise any money this year as I had a free place after coming to agreement with the event organisers who in turn used lots of my previous year’s video as promotional footage.

Yet again we had a great meet up and curry at Lahore Kebab House long before the ride and we’re really pleased that not only did JDRF challenge event organiser Bronagh come along but JDRF’s CX Karen too. It felt great to be supported and their support spurred us on for the ride.

What interested me this year was that two-thirds of us were using Nightscout and we had a bit of fun reporting on our kids’ glucose readings throughout our ride.

We had lots of fun.
Take a look.

(Here’s last year’s video)

JDRFDadsLogo

The Nightscout and GCSE Game Plan

It’s 5am and I’m awake now for the day after being woken up by my Pebble smartwatch alerting me to Amy being hypo.
Capture

Game Plan

I’m not too bothered about the early start though as my alarm’s due to go off in a few minutes time as part of Amy’s GCSE Nightscout Game Plan, which aims to make sure Amy is perfectly in-range before she starts school on every day she has an exam.
Having in-range glucose levels means a couple of things for Amy: no extra stress on top of exam worries; being able to properly focus; more chance of her getting the results she wants.
So the Game Plan has been interupted by being a woken by a hypo alarm but it doesn’t matter as the key thing is that Amy will be in-range by the time she goes to school.

A break from Nightscout and CGM

I’ve been quite open about our recent lack of use of Nightscout, which feels strange given that I’m still presenting Nightscout to health care professionals. It’s always been about Amy’s decision to not want to wear any extra devices on her body (as well as her pump cannula). Amy made the choice to wear CGM and use Nightscout again because she knew it could help her through exam period.

Surely, a game plan is over the top?

Well, is it?
Amy is very close to being an A grade student and that’s something she wants, Jane and I have never put any pressure on her.
She has dreams of attending medical school and to be in the best place for that she needs three A-grade A levels, and to be in the best place for getting those she needs/wants A-grade GCSEs.
We’ve hardly seen her since January as each day after school she goes up to her room to chill out a little before picking up the revision books or doing practice exams.She’s done this virtually every day this year, plus weekends too, again it’s all her choice no matter how much we’ve tried to encourage more chillout time.
All this work could be undone by not being able to think properly during an exam.
Surely it would be silly not to use tools available to make sure Amy achieves her goal?

Still learning

We knew yesterday that Amy’s overnight basal needed changing but decided against making any changes the night before an exam, we’ll do it tonight instead.
Which is all well and good except that now, on reflection, I can see that given her bedtime glucose level she was always going to go hypo early this morning. I feel a bit silly now but it just goes to show that even 6 years in we still make mistakes.
Just like the fact I put a 0% TBR on at 5am rather than wake her and feed her glucose, something I didn’t want to do just in case she stayed awake. I’m regretting that choice too.

Holding my nerve

The only question now is how long I hold my nerve, hoping the TBR works.
Good news though, it appears to be working.