Exam season and looping, what a difference DIYAPS makes

It’s 6:30am and I’m awake now for the day, but I wasn’t woken up by any CGM remote monitoring alarms, nor clock alarms because I need to check Amy’s glucose levels, no, I’m just awake because it’s time to get ready for work.

Reflecting back to two years ago when I wrote The Nightscout and GCSE Game Plan it’s amazing what a change using a DIY closed-loop artificial pancreas system (DIYAPS) makes to all our lives. Amy’s currently using AndroidAPS, Dexcom G5 CGM and a DanaRS insulin pump.

Let’s do a comparison

Two years ago using only Nightscout remote monitoring I would set an alarm on each exam day around 5:30am to make sure Amy’s glucose levels were good and stable. One exam morning I was woken by a CGM alarm and this is what I saw:
Amy woken up hypo before an exam in 2017

Roll forward to today, no alarms, no early wake up, life as ‘normal’ as it could be, and I woke up to see this:
Amy wakes bang on target
Amy’s current glucose target range is set as 5.3-5.5mmol. She’s woken bang on target, without alarms, wihout any checking or intervention by people, *just* FIFTY-EIGHT TBRs from AndroidAPS in the last 12 hours.
Priceless.

I almost need say nothing more at all, that picture conveys so much but it doesn’t tell you the full picture.

More than waking up on target

So looping makes sure she wakes up on target for each exam day but it’s so much more than that.

Amy has set her sights on studying medicine at university and becoming a Doctor, and whilst for this year no-one has offered her even an interview* she still needs to gain A or A* grades in her A Levels of Chemistry, Biology and Psychology. To do this is hard, damn hard and she’s been studying almost non-stop – hours every evening and most weekends – for two-years. For the last couple of months this has been ramped up and she barely has any free time.

Two years ago revision was just as full-on but it was broken up with hypos and hypers and occasionally a brain-fog which stopped revision in its tracks. Roll on to now, looping is keeping her levels as in-range as possible, and maximising the time allowed for decent revision which is absorbed.

Could it be any better?

Well, yes, it could.
Amy’s AndroidAPS DIY looping software runs on her phone, phones aren’t allowed in exam halls, so she cannot loop whilst doing the exams, some of which last many hours. She does of course start each exam perfectly in range (food consumption timing dependent of course).
This wouldn’t be any different if she used Loop as iPhones are required or OpenAPS where the software runs on a small computer, which also (probably) wouldn’t be allowed in the exam hall. If her looping software was on her pump then she would be able to loop all the way through the exams, so the Medtronic 670G would be a better option for exams.**

UPDATE:So after writing the paragraph above this morning quite a few people said that their child had been given ‘reasonable adjustments’ to loop for exams, it got me thinking but I was sure we’d asked and was told ‘no’. I was wrong. Amy went hypo in today’s exam and due to other issues her exam invigilator called me, so I took the opportunity to ask her about Amy looping if her phone was given to the invigilator within a clear case. The exam invigilator said that would be fine and spoke about there being lots of talk around subjects like this in the various online groups for exam invigilators. It turns out we’d never asked properly but from here on in Amy will be able to loop during her remaining A level exams. Lesson learned.

*which is a shame for a A grade student, top third clinical aptitude test score in the UK, national conference speaking, bags of life experience, diabetes/tech knowledge
** okay, Medtronic, I’ll give you that one, but just for exams only right.

Quickest clinic appointment ever

20190519, distribution cut downLast night’s clinic appointment was the quickest one ever, not that time is a measure of a successful appointment, but it felt really nice. Normally Amy has great chats and lot of time with her normal Consultant but this time she had a Doctor she’s only seen once, some time ago.

Other than clinic notes the new Consultant knew nothing about Amy’s history with the pumps, she’d never seen her/a DanaRS or knew that Amy has used DIY looping part time for a while now. (Amy’s not a fan of wearing CGM so has regular breaks from CGM/looping, her choice, it works well for her.)

As usual all the measurements were taken, then as soon as we’d sat down in the waiting room Dr L came to get Amy, who asked me to go in with her. She’s in transition clinic so naturally she takes the lead on whether parents go in, and she always wants us there, under no pressure I should add.

Dr L asks Amy how she is.
Amy feels good, explains her diabetes just started going well again after a worse time, without her doing any changes. She feels in control, everything’s fine.
Dr L: “That’s great. Do you have your Diasend reports, we had trouble accessing your account”
Amy explains we don’t really do that, we give them Nightscout reports as we fund CGM, so it’s better than a few BG checks per day.
Dr L hasn’t really seen Nightscout reports from us before, but we’ve given her a range of 1 week and 3 month reports (distribution/time-in-range reports, percentile (AGP-esque) chart, weekly success).
She’s pleased. “Look at those graphs, that night time section is really tight”.
Meanwhile the DSN asked if Amy was looping and after I nodded she explained to Dr L that Amy was looping with the DanaRS which she got in November. Amy estimated that she’s looped 60% or more of the time since December.
“These results are what we’d like to see for all our patients, well done.” said Dr L.

After the (not the most crucial thing but still interesting) HbA1C result was ready with its pleasing 0.4% drop since 4 months ago – which had dropped 0.4% from the one before – Dr L asked Amy some diabetes management questions (alcohol etc.), asked Amy if she had any questions (“No, I’m fine”) and we left.

20 minutes.
Still had to blooming pay £1.80 for the car park though.

WeAreNotWaiting at the JDRF Discovery Day, Southampton

Two days after presenting about DIY looping at the Diabetes UK Professional conference, I had another groundbreaking experience: presenting #WeAreNotWaiting at a JDRF Discovery Day.Rolling back to January 2016, Amy, Stuart, Kate and myself presented to the board of JDRF, a wonderful team all amazed at what the WeAreNotWaiting community had done.
“Would it be possible for us to present this at JDRF Discovery Days?”
“No” came back the somewhat unsurprising answer, after all none of this is clinically trialled or approved.
Many of us kept chatting with JDRF behind the scenes, keeping them abreast of last DIY tech, and were happy to see their open source initiative released in 2017.Late last year when I finally asked the same question again, receiving a “Yes”, which I then promptly forgot about what with the many other plates I’m spinning.Luckily Matt Guy (of Little D) was on the case and – with the help of JDRF’s wonderful Abbie – secured the first ever spot for WeAreNotWaiting to be spoken about in detail at a JDRF Discovery Day, the first of its kind.
Wow, was this really happening?
Yes, and we had a whole hour to talk about DIY tech solutions.

The agenda was set

Matt and his family’s journey with DIY tech is a rather good one, so he’d talk for 30 minutes.
Tara would talk about her journey with Type 1 to building Loop, the DIY system which runs on Apple devices.
I would then present a cut down of my WeAreNotWaiting talk, focusing on looping, explaining all the versions.

The day arrives

Setting up the Nightscout stands again felt so familiar, but today was different, and it meant quite a lot to be part of this. Matt and Tara arrived, plus over a hundred people and we were ready to go. Setting up alongside the pharma reps we’ve come to know very well, especially Helen and Jamie.

Matt’s journey using tech for his daughter (who has Type 1)

I could listen to Matt telling his story for hours, he’s such a great presenter, thought-provoking, funny, factual, and not to forget an all-round blooming nice guy (no pun intended). Speaking about diagnosis of his young daughter, their rollercoaster ride of diabetes and how they did anything to gain a slight advantage in managing his daughter’s diabetes. I remember well the day he set up the sound software to listen for the different beeps of a 640G pump, such a great idea.

Tara on using Loop for herself

Tara’s story is very different, diagnosed with MODY-3, and no chance of getting a funded pump she had to go down the DIY route. As an iPhone fan the best solution for her was to use ‘Loop’. Tara told me how nervous she was about presenting but you’d never have known, she spoke so well about her experience, about Loop and how it’s worked for her.

I first met Tara at a presentation I gave at the Sugarbuddies conference back in September, where I’d already tapped her up to talk about Loop for a few minutes, which got extended due to the interest in the audience. I feel Tara and I may become a local looping double-act and I’ve already asked her to help at a presentation in April.

And on to little old me

“My first thoughts on today?” I started, “are JDRF mad, letting us loose on the public?”. I wanted to highlight how things had moved on since 2015 when we started using Nightscout, how the charities and HCPs are reacting, and how this is now all clearly out in the open, and hence why we were there.
10 minutes was all I was meant to be on for, but if I’m honest the opportunity was so great to get so much across to so many that I deliberately overran by 50%….that’s only five minutes though, so not too bad.
My online Prezi presentation is here if you want to take a look: bit.ly/jdrf190309 (although obviously context will be lost a little).
As always I told people about what others are doing, and specifically that they needed to be sure it was what they wanted and be comfortable with what they were doing.
It’s Do It Yourself but it’s not Do It Alone.

And what really matters…

The conversations which followed next mattered the most: JDRF were happy, we were happy, the attendees were happy.
Immediately two people said they had all the tools to loop and would look into it.
In the online forums there was some chats about the event, others ask for clarification about tech, or links to info, or ideas.
By the end of the day 8 new people/families would be starting their journey towards looping, or using Nightscout.
EIGHT!

Two weeks later

Two weeks on two of those families are already looping, first using an ‘open loop’ system with AndroidAPS, which as they learn and go through the objectives will allow them to close the loop within a short period.

DIY Looping at the Diabetes UK Professional Conference

DUKPC-KW-2“We’re thinking of running a DIY looping Hot Topic at the professional conference” the Diabetes UK Director told me, “and we’ll ask (Dr) Emma (Wilmot) to run it”. (A Hot Topic is usually quite a short session of 15 minutes or less.)

“Hi Emma, just a quick message to say xxxxx told me about your possible Hot Topic session at DUKPC. If you need any clean images for presentations I’ve got a fair few…” I tweeted privately.

[a few weeks passed]

Emma’s email arrived. “I am delighted to report that DUK are keen to include a dedicated session on OpenAPS at DUK…I was hoping you would be agreeable to presenting at this session”

*gulp*
Oh heck.
Yes.
Absolutely Yes.

From little acorns…

I was really pleased that the topic was a Hot Topic, let alone become a dedicated session, let alone that I’d get to present alongside my friend and utterly-brilliant-and-selfless-and-tireless-looping-support-guy Alasdair, alongside Dr Emma Wilmot and Dr May Ng, in a session chaired by Dr Partha Kar. Not only this, but the session was designed so that the patients (I’ll include me in that) got 30 minutes to present, the Doctors having 10 minutes each. This was a bit step forward in the DIY diabetes tech world.

Officially invited, this is happening

The official invite came, saying I could attend for whichever conference days I wanted, so without hesitation so with it being my first I chose all three.
I googled the venue and room plan, that’s good only about 50 seats, I’m cool with that. Either my googling failed me or someone realised they’d need a bigger boat room as this is what greeted me on Day 1. Even then, without an audience, I was getting heckled…by my friend Kelly.
DUKPC-KW-3DUKPC-KW-4

Prep, prep, prep

Alasdair and I spent weeks trying to make sure we got all the important points into our presentation, making sure it flowed nicely and made (as much) sense (as possible). Revisions came and went, slides got deleted, new ones added and finally we had it, version 11, although if I’m honest v11 went to v11f. Working together over Skype was easy, a very enjoyable experience, but I’m not sure who’s more finickity about fonts/spacing/lining-up, me or him….probably me though.

No backing out now

As the day arrived I had no nerves at all, it was bizarre, I always feel a little nervous before presenting. I spent the earlier part of the morning listening to the fantastic Ellie talk about her transition, a sad and frustrating story which I never knew, even though we’ve followed each other on Twitter for ages.
The crowd came in, the session started, the nerves hit full on and I forgot to say most of my first slide. Damn it, Alasdair looked so in control, I was anything but. By the end of the first slide I felt relaxed and in control. The mind’s a funny thing.
My favourite part of any of my recent presentations is when I play the 70 second time-lapse video of AndroidAPS doing it’s magic, first with Amy’s glucose using TBRs (temporary basal rates) and next with Alasdair’s using SMBs (supermicroboluses). I love telling the audience what they need to keep an eye out for, then pressing play and watching the jaws drop as they see how it performs and realise what a Godsend any system like this is.

We moved on to describe the three systems (Loop, OpenAPS, AndroidAPS), how things have moved on with the algorithms, how the HCPs could help and more. When my final slide appeared ‘Useful Resources’ a hundred hands were raised snapping a picture of all of the links, and as they did my four scheduled tweets (#1,#2,#3,#4) went out on Twitter too.
It was over. I was relieved and sad that it was over, but mostly relieved. We’d done a pretty good job I think.
Dr Wilmot’s and Dr Ng’s presentations were fabulous, hitting all the right points, and the Q&A afterwards was excellent, with some Doctors suggesting they couldn’t support such initiatives and others say how Doctors absolutely should support whatever their patients are doing.
Within seconds of the session finishing Dana M Lewis messaged Alasdair and me to congratulate us, even though she was miles away, that was a nice touch.

Our presentation photos and slide deck

Thanks to Joanne Cura who took photos of virtually every slide so you get to see most of our presentation.
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DUKPC_Jo_10
DUKPC4a
DUKPC_Jo_2
DUKPC_Jo_1
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Checking the feedback

Many presenters say never to look at the feedback but for me it’s important, otherwise how can you assess if you need to change anything for next time?
I didn’t get to properly check Twitter for any chatter about the session until 1am, but these really made my day.

To have the honour of Diabetes UK’s Chief Executive, Chris Askew, attending our session when so many other great sessions were happening:
chrisaskew

To the praise from Doctor’s who attended:
swelldiabetes

To the one which made all the efforts made by all involved so very worthwhile:
DUKPC9

And it was nice to make the cut of the conference summary video too.

“Alexa, ask T1Resources, what is….”

During the Christmas break whilst configuring my new Amazon Echo to use the already existing Nightscout Alexa integration, my Developer’s mind was curious how these Alexa ‘skills’ were created. I’d need an idea though, but what? What could I do? All the skills existed. Ok, let’s forget this idea.

Hours later I was putting some coding changes into the Diabetes/Tech Dictionary of terms on T1Resources.UK.

I realised THIS would be my Alexa project. It would be great if someone could say ‘Alexa, ask T1Resources, what is Looping’, or WeAreNotWaiting, or AMA, or ISF etc..

And now they can.

You can start off saying ‘Alexa, ask T1Resources, what is…’.
You can say ‘Alexa, ask T1Resources, tell me a random word’.
Or even perhaps – just for fun – ‘Alexa, ask T1Resources, when will I be cured’.
Ask about any of the acronyms found used with the DIY looping systems, like ‘AMA’, ‘flash’, ‘putty’ or ‘SMB’.
Ask about standard diabetes terms like ‘ISF’, ‘CR’, or ‘bolus’.
Have some fun asking what is ‘rage bolus’, ‘unicorn’, ‘dana’, ‘chapstick’ or ‘leaky reps’.

You can ask what Nightscout is, or #WeAreNotWaiting or Looping, as I am here:

Adding the T1Resources Skill to your Echo

t1resources alexa>Within you Amazon Alexa phone app:
– click the menu bars in the top left
– choose Skill & Games
– click the search icon
– enter T1Resources
– click T1Resources to view the skill info
– enable the skil
– you’re ready to try this on you Amazon Echo, or with your phone app.

T1Resources.UK’s Dictionary of Diabetes/Tech Terms

Back in October whilst standing in front of 200 health care professionals at the Royal College of Physicians in Edinburgh, a not-so-immaculately timed* scheduled tweet announced my latest project as I presented about it to the audience*

t1resources dictionary announcement
*I was ahead in my presentation by two minutes. Damn!

Earlier in 2018 Dr Anna Dover tweeted about trying to find out what all the terms used by the WeAreNotWaiting community meant. It seemed like a good project and surely it would only take a day or two, right? Nothing ever goes quite as planned and knowing that I wanted to announce it as my presentation I hurriedly started writing it a couple of weeks before.

It turns out writing the web site for the dictionary was no problem at all, but getting all the definitions live was; I thought there would only be 50 or so and now in January we stand at over 270. It became quite difficult to determine what was just tech words and what also might be helpful, so I started putting lots of stuff in. Plus I’ve added some terms just for fun.

Here’s a sample look at the dictionary, where I’ve done a search for OpenAPS, which is highlighted in green and has the all related terms underneath. On the left is the latest 5 terms added to the dictionary, plus a random term for you to learn about.
t1resources dictionary

You can find the dictionary under , Start Here, Diabetes & Tech Dictionary, or just go via its quick link http://bit.ly/t1rdictionary.

If there are any terms not listed click the ‘Want us to add a new definition?’ link and say what you would like to find out about.
If there are any definitions wrong click the icon to the right of each explanation and let me know what to change.

A note about Open Source: I’d initially imagined this would be an open source project but with a lack of understanding about getting started with Open Source development with my personal development environment I just coded it up, in private. One day when I have a bit of time I’ll change that, but in the meantime if you want to get access to the data please contact me.

Thanks for Paul Niven and Dr Anna Dover for the help and inspiration with this project.

Fun with Alexa/Nightscout/AndroidAPS – plus VERY important questions

After buying my eldest daughter an Amazon Echo for Christmas we decided to get one for the kitchen, then I remembered that it was possible to integrate Nightscout into it.

Within 30 minutes of starting from scratch I had it all set up, it was good, it worked well. Being a programmer though meant I couldn’t stop there so I delved into the unknown world of Echo development and added a couple of questions, just for fun, for Amy (video: 20 seconds in). After showing some of my Diabetes Dad friends I added a third question (video: 40 seconds in) which is an in-joke between us all.

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