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.

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.

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.

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.