Medical Technology Awareness Week Reception at the Houses of Parliament

Parliament from inside the gatesThrough INPUT Diabetes I got a chance to get to see the Palace of Westminster for the first time AND talk about diabetes tech to anyone prepared to listen. Two birds, one stone, what could have been better. Well actually I attended another great event afterwards too – blog coming soon – , so three birds, one stone, if that’s a thing.

The Medical Technology Group’s event yesterday was hosted by John Pugh MP and part of the group’s Medical Technology Awareness Week. The event sought to get people together discussing technology used to help people manage their conditions. Type 1 Diabetes is clearly a condition which has benefitted from the tech available, in fact it’s hard to imagine a life now without it. Of course I realise how lucky we are to have all this, in fact I realise how lucky we are to be able to get insulin without issue.

Matt and I travelled up together and arriving at Parliament all suited up I cursed ignoring his advice to borrow a coat as ‘it’s bound to rain’, as it did, just as we were waiting at security under a torrential sky; so I entered Britain’s seat of power drenched and dishevelled. Through security tighter than Paris last weekend and into the main Westminster Hall and meet our friend Alistair (Samuelson) and all took a sneak peak at the MPs discussing things in the House of Commons.

On the day before I left I tweeted to several MPs from my local area: Mim Davies MP as she’s my local MP; Caroline Noakes MP as she’s a neighbouring MP and I knew she had an interest in Diabetes; Suella Fernandes MP as she’s the MP for where I work. Suella was not in London that day but I was amazed to get responses from Caroline and Mim – am I allowed to refer to them by their first name, what’s the protocol here?
tweetdavies

tweetnoakes

The event was held in the marquee overlooking the River Thames, a marquee I’ve seen so many times from the other side. Collecting my badge I heard my name mentioned, an MP was here to see me. Crikey! Already?

I spent a good few minutes speaking with Caroline Noakes MP about Amy’s diabetes tech, talking about how Amy’s pump is life changing and she’d never give it back. Caroline has an interest in Diabetes, I’ve seen this often in media articles and events, and it made explaining things a lot easier. Unfortunately though Caroline had to go to speak in the Further Education debate happening in the House so our chat didn’t last long but I was very grateful for the chance to discuss the life-changing tech Amy uses.

Off to find the insulin pump table provided by Roche where Matt, Alistair and I chatted with Lesley (INPUT) and Philippa, whom I know from the #DOC (Diabetes Online Community). Philippa had been before and this time was one of the speakers; she admitted to being nervous and I knew exactly how she felt from when I did the Nightscout presentations a few weeks ago. I knew Philippa would speak well, she’s a very level-headed, knowledgeable patient advocate and hearing her speak I felt quite proud of what she was doing and saying. The audience was engaged, people didn’t leave the room, they didn’t shuffle about and whisper, they were held there listening attentively to her story, to effectively Amy’s story, to the story of many of my friends. I thought she could do with some praise from the #DOCPhilippa speaks at Parliament

mimdaviesMy MP, Mim Davies, returned for a chat and we spent a long time talking about the medical tech which is life changing for Amy, how we get some of it from the NHS and how we self fund CGM. I couldn’t help but show her Amy’s glucose readings on my Pebble watch and go into (probably too much) detail about how Nightscout is an unfunded parent driven group with 15000 worldwide families using Open Source software. Mim seemed quite impressed with the whole thing. We chatted in general about Type 2 Diabetes as through my research I knew Mim had recently met with Jamie Oliver about the sugar tax proposal and I mentioned that this would cost people with Type 1 Diabetes more as sugary drinks are also life saving medicine when hypo.

I loved this event and would encourage you to go to it or similar if you ever get the chance.

Vive le weekend, vive Nightscout, vive la France et très bien Amy

DSC_2651This weekend saw Jane and I go away for the first time without the kids, celebrating Jane’s 50th birthday with a surprise weekend to Paris. Amy, Emilia and I had been planning this for ages, they were both happy to be left alone, probably happier than I was feeling about it if I’m honest. At almost 18 and almost 15 Emilia and Amy were more than capable of looking after themselves, Type 1 issues aside.

Thursday 12th November

As we sped into France on the Eurostar on Thursday night, I waited for the Fajita-induced glucose spikes to hit my Pebble watch with the data sent by Nightscout. I would have preferred that the kids didn’t start with the most evil of glucose-spiking meals on our first night away, but this was their choice and Amy knew it would need managing.

Nightscout for a trip like this was a Godsend, although typically our house WiFi had started going wrong minutes before we left the house and Amy’s phone had run out of 3G data allowance. Somehow a low 3.2 notification got to my phone and nervously I thought I’d check-in with Amy and request she check her level.

wpid-wp-1447652062790.jpeg

At 10:30pm, as Jane and I went out to a cabaret I bid Amy bonne nuit.

Friday

‘Bees?’ is my way of instantly making Amy laugh, it’s a Cards Against Humanity reference.
I meant to say ‘Miss’ not ‘Mid’

So I didn’t get to see the nice 22mmol she hit between 2am and 3am as the WiFi had stopped but Amy had managed herself really, really well.

Jane and I had a fabulous time on Friday, walking from our beautiful peniche for three nights on the Seine to Invalides and then to the surreal catacombs Jane wanted to visit – ugh! Then up Montparnasse at 5pm to watch the sun go down and the City of Light start to glow. On floor 59 we pulled up two seats and watched the Parisien lights appear before heading off to Bouillion Chartier for dinner.
At various times throughout the day I’d glanced at Amy’s glucose levels on my Pebble, she was doing a grand job.

Friday 13th, a night of terror in Paris

I checked my phone when we got back to the houseboat and saw this from my friend Carolyn
pleasecheckin
I checked in with Carolyn and got some twitter replies from other Twitter friends. We’d heard sirens, a lot of sirens, but had thought nothing of it.
Within seconds my thoughts turned to the kids and knowing Emilia was at work I messaged Amy.
message

Dozens of private messages had arrived via Twitter and Facebook, so I sent another message out:parispressrelease1

Saturday 14th

Amy’s glucose levels overnight had been good, Emilia’s (non-T1) on the other hand were probably another story: she’d been awake half the night worrying reading the newsfeeds.
As I fell asleep the night before we thought it was a single shooting or explosion, nothing like the devastation which actually took place. Only in the morning did we realise the extend of the night of terror Paris endured.

Logging in to Facebook it suggested that I might be in an area affected by the terrorism and asked two questions: was I there – yes; was I ok – yes. What a great idea this was, especially when I learned that Facebook friends had this information right at the top of their newsfeeds when they logged in.

Message upon message rolled in, phone call upon phone call. I put out numerous messages and set up a network of people all set to check in on the kids at various points throughout the day.
I guessed Amy and Emilia were still sleeping though; should I wake them, should I leave them sleeping? I waited a bit, I couldn’t wait long though to hear their voices.

A subdued Paris

With most of Paris shut down, hundreds of sirens going off and armed police roaming the streets I peered out of the houseboat’s windows and gazed upon an eerie silent Paris still moving. The absence of tourist boats made the river a quiet place but people were still jogging, cycling and living life on the Rive Gauche.
We spent the day walking around the silent Parisien streets using ghosttown Metros to get around. You couldn’t help but feel the sadness of the city.

Back to the kids

Even with everything going on, Amy and Emilia had dealt with everything brilliantly. We were of course remotely checking on Amy several times a day but with the odd nudge managed her glucose levels superbly over this trying period.
And the result?
Nightscout estimates over these 4 days she’d have an HbA1c of 6.0%.
Wow
4 days estimate

World Diabetes Day 2015 and Blogaversary 3

Eiffel arrivalIt hardly seems like a month ago since I wrote last year’s WDD2014 and Blogaversary 2 post but now I reflect it feels like a lifetime ago.

Three years on and I’m surprised I’m still blogging, I thought my enthusiasm for this fad would have died out by now and I suppose it has a little as I just don’t seem to write so much these days. In reality the problem is time and I’m not sure that’s going to improve any time soon.

World Diabetes Day for me is about reflecting on what we’ve achieved during the past twelve months whilst looking to the future about we’ll achieve, plus the advancements of medicine and tech which help everyone with Type 1 Diabetes.
(I’m posting this early as I’m away for the weekend.)

Motto for the last year

I can sum up the last 12 months in three easy words: Pay It Forward. I’d like to think this has always been my motto but never so much as it has been recently. It’s important to me, it keeps the world spinning in my eyes, it makes may days brighter and when in (thankfully rare) darker moods it’s the only thing which gets me through the day.
So here goes for a few moments of the previous year, but first how’s Amy been getting on?

Amy’s worst moment with Type 1 – Where’s Jacques?

Quite recently we visited Versailles so it’s apt to think this last year was the best of times, it was the worst of times. Unlike in Dickens’s Tale of Two Cities there’s been no revolution but we’ve certainly had two episodes which came too close to kissing the guilotine for my liking. August was marred by two moments when we just took our eye off the ball and by rights Amy should have gone to hospital to quickly get her out of her nose dive towards diabetoketoacidosis. I don’t feel that proud that I didn’t take her in but we wanted to spare her the trauma, but she was scared, we were all scared and yet the first occurrence really proved what a great team our little family unit is, all pulling together for the good of Amy.
That first near-DKA occurrence was a dark moment for me particularly, I’ve never felt so helpless but at the same time the education everyone in the #DOC has helped me attain meant I knew what was going on.
It turns out I can’t even read this tweet without welling up, it’s raw:
nearDKAtweet
Whilst I got lots of advice from the #DOC it was really only Andy Sherwood who kept me going through this as without WiFi or data I relied on SMS and I thankfully had Andy’s number to hand. Thank you Andy.
Anyway, enough of this dark rubbish, let’s move on.

Pay It Forward – with the Pharmacists and Peer Support

In December last year I got the opportunity to help the next generation of Pharmacists learn what living as a family with Type 1 diabetes meant. I thought it went well but maybe not, I’ve not been asked back.
I’ve continued my role as Peer Supporter for Diabetes UK in a slightly lesser manner than before but still get to help people via email. It’s a vital service but I just couldn’t commit any time to answering the phones anymore.

January: time to say #WeAreNotWaiting

On January 1st, in ‘new start’ mode I pulled the trigger and ordered up the components needed to build xDrip and get Nightscout up and running.
10 days later with it up and running I realeasd my first blog about it: #WeAreNotWaiting thanks to #xDrip – Introduction.
I can’t possibly explain it here so read the above article or any of the several #WeAreNotWaiting posts I’ve done.
The xDrip blog articles went wild, especially in the States and are still used by many to introduce xDrip and Nightscout to newbies. I’m quite proud of that.
My involvement with Nightscout and xDrip moved on a stage when I was asked to be part of a team presenting Nightscout to many families at a conference recently. See the posts here and here or watch the videos of the presentations.
My involvement with Nightscout is contuining at a pace and I hope January’s blog(s) may prove interesting and exciting.

March: the #GBDOC conference

The first ever ‘unconference’ organised by Paul and Midge of TeamBloodGlucose was simply brilliant.
The opportunity to meet with several of my online friends was excellent and meeting Veeny was a highlight for me but the effort Jules put in to be able to attend made her the star of the show for many of us.
Later that evening we would learn that toothpaste is an unsuitable hypo treatment. It’s a shock eh?

April: Amy nails a week in Germany

Amy spent a week in April on a student exchange trip to Germany. Not only did she nail her glucose levels sufficiently to have a great time away – some feat considering the family lived so close to the Haribo outlet shop – but she spoken German all the time, one of the few to do so, and nailed an A in her GCSE which she took two years early.

May: Conferences, Public Speaking and Interviews

May was a big month. First, Amy and I spoke a little at the National Paediatric Team Meeting in Birmingham. A super scary time speaking in front of 200 health care professionals.
Then I had the most wonderful time with Chris, interviewing Dr Stephen Ponder about Sugar Surfing on behalf of Diabetes UK. Dr P is undoubtedly one of the nicest people I’ve ever met.

June and August: cycle, cycle, cycle

In June I undertook the biggest cycle ride of my life, cycling from London to Paris in a self-organised and unsupported trip with friends, raising £600 for INPUTDiabetes. The full self-organised London to Paris trip blog is available here if you fancy doing this yourself.
In August I rode the longest ride of my life, 100 miles, supporting JDRF and raising £430 in the Prudential Ride London Surrey 100.

And finally, some statistics

My blog has never been about statistics however it’s really nice to see them improve. Well I say improve, they’ve rocketed since blogging about Nightscout and xDrip.
In the first year the blog had about 11,000 hits.
In the second a huge increase to 27,000 that year, over 38,000 in total.
In the third, because of xDrip, it’s massively increased to 52,000 hits, and a grand total of over 90,000 hits.
The key thing about these numbers is that people are finding the information that matters, and that’s all that matters.

#PayItForward

Presenting Nightscout at CWD FFL 2015 – the videos

This article contains the three presentation videos recorded at Children with Diabetes Friends for Life 2015 at Windsor on November 1st 2015. They are available on the Nightscout UK YouTube channel individually, or as a playlist.

Introduction

Here’s an uplifting video previewing the Nightscout conferences taking part in the Fall Autumn of 2015.

(Watch on YouTube)

Part One

A moving introduction to Nightscout from Wes and then the ‘What Nightscout Means To Me’ presentations from Kate and Jesus.

(Watch on YouTube)

Part Two

Myself, Tim and Stuart give ‘What Nightscout Means To Me’ presentations. Kate introduces Nightscout web pages, apps and CarePortal, Stuart introduces the advanced options, I introduce the reporting options, then take the mick out of Wes’s Apple Watch a little before reminding everyone that Nightscout is DIY, no-one will do it for you.

(Watch on YouTube)

Nightscout Workshop at CWD FFL 2015

You might like to read the article about the morning’s presentation of Nightscout to families at the CWD FFL 2015 conference if you’ve not already done so.

Afternoon Presentation/Workshop

Nightscout UK teamIt seems the afternoon session was the only one actually listed in the FFL programme so we had more people, about 30, attending.
Like the morning session they were really attentive, most of them knew Nightscout already, they wanted it, they needed it and they thankfully had a lot of questions.

 
First we gave the obligatory warning that Nightscout isn’t an approved thing, it can’t be bought, it’s not something anyone would build for you, you should never make a medical decision based on information shown etc. etc..

After debunking the myth that this was a solution only available to nerdy geeks we showed the routes into Nightscout from a ‘How Do You Get Your CGM In The Cloud‘ article, quickly dismissing some of the USA-centric options like Share and focussing on using a Dexcom receiver, xDrip device or using the uploader for Medtronic CGM (not 640g).
Kate showed the original ‘rig’ where a phone is directly connected to a Dexcom receiver as this is what her family first used, but now they use xDrip.

xdrip circuit
xdrip1xdrip2

I presented the xDrip wiring diagram and hopefully quickly busted the myth that it’s hard to build. For me this was the easiest bit to present as I knew most of the audience just got it, for some the penny dropped during the presentation, for some it just reaffirmed what they already knew and thought.
People were keen to see some model xDrips so I passed my two spares to members of the audience, whilst Tim demonstrated the tiny one in a TicTac box which he wears on a band around his bicep which he prefers to do so he doesn’t forget it.
Jesus talked about the components required to build MMCommander to get CGM data from Enlites (for Medtronic 530 and Veo pumps) into Nightscout, which received a lot of interest from the audience.
In the last slide Kate spoke about the different cloud services which were required for a standard Nightscout installation: Azure, for the web site; MongoLab, where the data is held; GitHub, where the code is for everything.

Workshop session

Nightscout afternoon sessionsAt the start of the workshop session we split into two tables, one for Medtronic with Jesus, one for Dexcom/xDrip with Kate, Tim and myself. Stuart meanwhile helped one of the audience members sort out issues with her set up, she left with it working properly.
I spent most of my time showing the two of the different xDrips I’d built, fielding questions about the components or how to build them or issues I faced.

It’s hard to imagine how the session could have gone any better: people seemed to get the answers they needed; people seemed engaged; many said they would order the components that night and set up Nightscout as soon as possible.
From my point of view we had achieved our goal, that one family walked away from the presentation/workshop having discovered something they could set up to help them. But in this case it wasn’t one, it was probably 20 or 30.

Presenting Nightscout to Families at CWD FFL UK 2015

Nighscout FFL, Kev, what nightscout means

Building a team for Old Blighty

Back in September Wes from the USA based Nightscout Foundation gave me the honour (yep Wes, there’s a ‘u’ in honour 🙂 ) of asking me to join a faculty team they were having at the Children With Diabetes Friends For Life UK conference which took place last weekend. Wes was gathering a team of Nightscout and xDrip users together with the aim of showing families what Nightscout does for us.

Nightscout UK team
Left to right: Stuart, Jesus, Wes, Kate, Kev, Tim

And so the team was formed with me, Wes, along with Stuart and Kate whose kids have Type1, and Tim and Jesus who both have Type 1 themselves. Jesus is somewhat of a God (bet that joke hasn’t been said before eh Jesus?) in the community and flew over from Spain for the weekend.

Then Wes dropped the bombshell, he wanted us to present Nightscout, not just give 1-1 advice and info at a stand. Present! What? Me? “Erm, okay” I said very tentatively. Being on holiday for the Saturday I could sadly only attend the Sunday but the planets aligned as that was the day the presentations were (“Oh great!”).

Panicking about presentation slides

At 5am the alarm sounded.
I present often at work and am somewhat reknowned for having whizzy slides full of colour, animation and more importantly eye-distracting graphics which take the focus off of me, but I had a problem as I would have no time to prepare anything as I was on holiday. So at 5am on the Sunday I woke in panic and managed to cobble stuff together and from there on in I felt relaxed, I had a plan, I had slides, I was ready.

A team as one

Nightscout team, anonymousNone of us had met before but after arriving at Windsor and meeting everyone I felt like this was a team which had been together many times, we were so relaxed together, sharing jokes, poking fun, and just understanding everything each other was talking about.
Our first task was to decide who was doing which bits and I found myself volunteering for a lot more than I thought I would. Perhaps I wasn’t so nervous after all.
Wes posted a photo: we were no longer anonymous.

Morning presentation – What Nightscout means to us

The morning session wasn’t advertised in the programme, just on flyers at our stand so we had less than 20 people there, but that was great for my first foray into public speaking. I’ve always felt that if anything I say or write opens the eyes of just one family then I’ve done my job because I know that family will open the eyes of another.
Due to enthusiastically overrunning our slide timing the session really turned into a What Nightscout Means To Us presentation.

Nightscout, Wes opening speechWes opened the presentation with a heartfelt introduction to Nightscout and what it mean for him, it was very moving, speaking about how his son’s T1 diagnosis at 12 months affected the family.
Kate spoke about how Nightscout “makes the diference” and spoke of how the “glanceability” of her glucose readings on a watch reflects what her driving instructor told her “nothing should ever come as a surprise in your rear view mirror”, she’s aware of what’s happening before it escalates into a difficult to deal with hypo or hyper.
Jesus’s story to me is amazing. He’s a parent but he is the T1 and he developed software for himself to monitor glucose readings. One day he heard John Costik’s Nightscout story and within an hour sent him an email to let him know that Jesus could get readings from Medtronic Veo CGM and could amend it to work with Nightscout. I can’t begin to tell you how moved I was by Jesus’s story of selflessness.
Tim’s story was another good one, speaking how great the community is and how Nightscout has pushed the boundaries and helped Dexcom release Share ahead of its original plan. Having Type 1 for 32 years he had a Dexcom receiver but built an xDrip and is pleased to realise the much better calculation engine than that available in UK Dexcom products, with the added bonus of extended life sensors. (USA has the ‘505’ software and Share but this has not been released in the UK.)
Stuart spoke about how Nightscout lets him know “at a glance whether to react or relax”, which along with Kate’s “glanceability” sum up Nightscout very well for me. With his daughter being 13 she is starting to manage her own diabetes and diabetes allows Stuart and his wife to pull away more and only intervene when required, meaning his daughter finds it less intrusive.

My presentation: BG’s are not as important as Snapchat or 5 Seconds of Summer

Nighscout FFL, Kev talking about watchesWhen my turn to speak arose I felt calm, I just wanted to get my story out there, I was somewhat surprised I wasn’t a bag of nerves.
I spoke about how to a teenager almost nothing was more than important the weekend lie-ins and that Nightscout means I’m not worried about whether she’s too low or too high when her bedroom door is closed till noon.
“BG’s are not as important as Snapchat and 5 Seconds of Summer” was my next line. Amy wants to be a teenager and do teenagery stuff like listening to her music and chatting online with friends, probably about the music they’re listening too…and boys…and boys who are in bands…like 5SOS. I mentioned that whilst cooking I can glance at my watch and decide whether I need to intrude on Amy to ask for an early BG check so we can pre-bolus, or adjust to get her at the lower end of her range before eating. Like Stuart’s daughter this is less intrusive for Amy than before Nightscout.
I explained how I use Nightscout to “nudge” Amy. With my range set from 3.5-14mmol and Amy’s set from 4-9mmol (her choice) I know that she would have had an alarm if over 9 but if she reaches 13 for example it’s probably because she’s not noticed an alarm, so I give her a gentle nudge to do a check or make an adjustment.
My key message though was how Amy’s HbA1c’s had changed through her time with Type 1:
hba1c history

Nightscout and how it works

Nighscout FFL, Kev, nightscout reportingKate went into the basics of Nightscout, the website, the browsers and phones and what appears on the screens and gave an overview of CarePortal. CarePortal is where kids and school carers/nurses can enter information about carbs, insulin and many other things into Nightscout which can then immediately be seen by the parent/carer, which in turn means that worries about Hypers may be negated if the parent can see insulin has been given, meaning in turn no panicky phone calls to school.
Stuart expanded on this talking about the ‘pills’ which appear on the screen and show you values such as Insulin On Board, Carbs On Board, and the Bolus Wizard Preview, which based on settings you’ve entered gives you an idea what sort of action might be required to get the child back in range. Stuart stressed that this is only for an idea of what to do and shouldn’t be used without deciding on whether that action is appropriate or not.
Nighscout FFL, Kev talking about watchesI presented about the reports Nightscout gives, comparing them favourably to Diasend which I rarely use now. One report gives you an estimation of A1c and ours said 6.8% prior to the last clinic when Amy got her 6.7% result.
Just for fun us Pebble watch users decided to do a speed test with Wes and his Apple Watch, to see how quick we could all glance out our kids’ glucose level. It took Wes a fair bit or time.

Finally

Finally, it was lunch time, and as the engaged audience left the room I knew the team had done a good job and we eagerly awaited the afternoon session which would include presenting solutions and a workshop where we could solder some bits or help get people going with their Nightscout solutions.

Pop4Diabetes 2015 with DRWF

pop4A couple of weeks ago Jane and I were invited to attend the Pop4Diabetes ball as a thank you from DRWF for things I’ve done for them. Claire and Lee from DRWF hosted us for the evening, alongside other volunteers such as Lynwood who does a lot of fundraising and other events for them.

What made the evening more special was that my Dad and step-mum Liz were also invited by Claire and Lee. My Dad has had Type 2 for quite some time but it was only Amy’s diagnosis which spurred me on to learn more about his Type 2 and ultimately to get him to learn more about it. Since the DRWF Wellness Day in 2013 Dad has volunteered for DRWF, helping them with mailshots, poster deliveries and many other things. He’s given a good deal of time helping out for the good of others so it was lovely to see him be invited to attend the ball too.

Pop4Diabetes is an annual ball like event, spearheaded by Iris Board who’s son Shane was diagnosed with Type 1 Diabetes several years ago. Shane is an actor/singer/presenter who has released various Type 1 oriented songs over the years, including the recent Find A Cure.

The event is frequented by celebrities past and present and this year Anita Dobson – Angie from Eastenders – was there supporting the event, along with internet star Jack Jones.

Music and dancing is the theme behind this event and it was great to hear songs from Shane and others, as well as songs and dancing from Naomi Bowring, a talented dancer/singer and Miss England candidate. There was dancing from local groups, some made up of adults only, others made up by kids, as well as a type 1 choir who sang a song.

Pop4Diabetes also gave out some awards to a few kids with Type 1 who had achieved good things over the years. It was lovely to see the smiles on the kids who received these awards and the pride beaming on theirs and their parents faces.

I really enjoyed the event but for me the highlight was being able to spend some time with DRWF and their supporters, and especially being able to chat all night with Lee (DRWF), chatting through all topics Type 1 related.

Pop4Diabetes was a great event, Iris has done well to pull it together and raise thousands of pounds yet again for charity.

The Bournemouth Echo did a nice write up about this year’s Pop4Diabetes event if you would like to read more.

Riding the Prudential Ride London Surrey 100 for JDRF

web-RLBR0092I’ve neglected the blog lately so it’s time to start catching up with things, starting with this, my round-up of my biggest cycle challenge so far, raising money for JDRF.
The Prudential Ride London Surrey 100 is a 100 mile cycle ride on closed roads, starting in London’s Olympic Park and heading through the city, out via Kingston towards the hills of Surrey before returning to London with the finish on The Mall.
It’s certainly doable for a keen cyclist if you put the training in beforehand, bearing in mind that I could barely cycle 25 miles a couple of years ago.

Getting a place

There’s two ways to get a place for RideLondon, either apply for a ballot place, or sign up for a place purchased by a charity. The charity route often means you’ll pay nothing up front but will commit to raise £500 or more. The ballot route means that you don’t need to raise any money for charity but you’ll pay a small fee – £50ish – if you’re lucky enough get ballot place.
With only a 1 in 5 chance of getting a place many are forced to go the charity route. I was lucky in the ballot but still decided to raise money for JDRF, breaking the £500 mark once GiftAid had been added.
Whilst no ballot place rider is forced to raise money events like this raise much needed millions for various charities and people realise that this is, for the amateur rider, an effort worth sponsoring.

passing Parliament

Nerves, nerves and more nerves

As the day came closer I got myself in a pickle: would I make the distance?; would I be too slow?; how would I get myself to London and back…and lots more.
The biggest worry was whether I’d be fast enough in the early section, especially if I suffered a puncture or mechanical issue in the first 20 miles.
I’d have 2hrs21 to make it to Hampton Court (26 miles) by 11am or risk being ousted by the dreaded ‘broom wagon’.
I knew I could beat a 12mph pace as long as no mechanical issues arose.

The day dawns

Waking up at 3am – there really was no point setting a 4am alarm! – people were already on Twitter, talking about loading up their bikes on the cars and generally getting excited.
Nerves had dissipated leaving only excitement.
I was in London by 5:50am, parking at Euston station which left me 7.5 miles to cycle to the start and importantly only 2.5 after I’d finished. I’d unknowingly parked next to another RideLondon first timer and we got ready together, each wondering what the event would be like.
The cycle to the start through a relatively sleepy London was easy and relaxed.

And we’re off

Richmond ParkStarting 25000 riders off takes a long time so they do it over three hours, with waves or riders going off together a few minutes apart. I was in the orange ‘N’ wave, starting at 8:39am, along with a fellow member of #GBDOC, Midge. Midge and I talked for some time whilst edging forward towards the start line, both eager to get going.
The DJ at the start span up Darude’s Sandstorm as we set off, which pleased me as others had departed to all manner of music I hate.
The start was relatively mellow, quite slow until we got on to the dual carriageways towards the centre of London. The speed increased and increased again and I was buzzing along at a steady 20mph, that’s pretty quick for me.
Midge and I seemed to play cat & mouse, one minute he was in front, the next it was me and suddenly he disappeared (probably way in front).

Faster than your average

They say you have to be able to average 11.75mph to complete the 100 miles in time, but the first cut-off is at 11am, 26 miles in. With my average riding pace being 13 to 14 mph I knew I’d make it, if I had no punctures, but I was very surprised to average almost 19mph over the first 26 miles, that’s way faster than my average. If you’d told me before I be so quick I would never have believed you.

One big JDRF team

Photo with JDRF Clare's kids at Newlands CornerJDRF had 100 riders in the event and we all started at different times but we all shared a common ground in Type 1 Diabetes.
Before we’d even set off I bumped into a couple wearing JDRF jerseys and had a very brief chat. I decided at this point that I would make sure I cycled over to any and every JDRF rider I was cycling near at any point and I’m so glad I did, it mad the event so much more enjoyable.
Within 5 miles I passed and chatted with another couple also wearing the team jersey, at mile 10 I rode alonside Rosie for few miles and was amazed that her ladies cycle team organised by Jenny Carr were all supporting a cause unrelated to their lives; much similar to all my friends joining in with Nightrider last year.
Around 40 miles another JDRF jersey spotted, it was Adam and we had a great chat about insulin pumps, diagnosis, insulin and the “cure”.
Team JDRF had their own set of cheerleaders at Newlands Corner, Dr Clare McVicker with her family were cheering us all on. It was lovely to stop and have a brief chat with Clare who got quite excited when I mentioned I was on Twitter and immediately I got a new follower.
Before setting off from Newlands I met more of Jenny’s team and afterwards cycled all the way to Dorking with a lovely couple from Cardiff.

Box hill

A few miles later after a brief stop at Box Hill I cycled up to another JDRF rider.
“Hello” I said “Nice jersey”.
“Haha, yeah your’s too. Hold on I know you, you’re Kev”
Quickly searching my memory and stalling for time by making out I had to steer around a stone or something, I embarrasingly couldn’t put a face to a name but luckily Paul introduced himself. Paul and I had chatted a few times online and we followed each other on Strava but I’m not I’d ever seen a picture of him – well that’s my excuse for not recognising him. Paul and I whiled away the miles chatting which was easy as we were similar speeds and very similar stories to share. Before we knew it we had covered over 30 miles together and finished on The Mall both with a 30mph+ sprint finish.
Being part of the JDRF team really made this event for me and riding with Paul was a big part of it.
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Best ride of my life

Given that this year I’ve ridden London to Paris with friends I can’t say Ride London was the best ride of my life BUT it’s pretty close. I met some wonderful people all supporting the Type 1 cause, I cemented a friendship which will last a long time, I rode 100 miles for the first time ever and raised a fair bit of money too.
If you’re thinking of riding Ride London then I say do it, you won’t regret it.
After finishing on The Mall

Cycling from London to Paris for INPUTDiabetes – How it went

London 2 Paris Logo + Input LogoWhilst the cycle ride from London to Paris had nothing to do with Type 1 Diabetes as such I was raising money for INPUTDiabetes so here’s a little bit of information about how it went.

Fundraising

Initially I set a target of £320, one pound for every kilometre of my trip. This seemed like a good idea for me as I guessed I’d have some tired dark moments where it would be an effort to turn the pedals and the thought of raising another pound for just one more kilometre would spur me on. Luckily this never happened.
Initially the uptake for sponsorship was slow and I was worried that I wouldn’t even make £100 but towards the event itself sponsorship poured in and exceeded my target.
I raised £511 which will turn into £623.75 including GiftAid.
A key thing is that I never felt under pressure to raise this money, I didn’t have to pressure people to donate just so I could reach a target set by a charity, as is the case with organised London to Paris rides. These targets are generally £1500 minimum sponsorship for a trip like this.

How much did it cost?

£200.
Yep, that’s all.
If I’d gone on an organised event I would have still had to pay £100 up front.
The price included all travel costs, all accommodation costs and some food but not all. It doesn’t include any extra bike bits (pannier, rack) or clothes you might need to buy.

How did the trip go?

Honestly I don’t think the trip could have gone any better: the routes worked and we never got lost; our bikes didn’t break; the accommodation was superb; we all had a great time.
One unknown for me was how I would feel on days 2,3 and 4 having to get up and get back on the bike for several hours. Each morning though I woke up fresh and ready to get cycling again, excited about that day’s ride.
For more information take a look at the new blog I created all about the trip, particularly the Trip Reports area.

Fancy trying it yourself?

If you can cycle 50 miles at 10mph you can do this trip too. None of us trained to be able to ride the full distances day after day – see this training page for more info – and as you’ve got all day to cover the distances the pace can be quite slow.
I’ve created a new blog which details all the routes, the planning, the costs and reports about each days’ rides here: London to Paris Cycle Ride.

Why I am Cycling to Paris for INPUT Diabetes

London 2 Paris Logo + Input Logo
Disclaimer: this post is all about fundraising – sponsorship link is here.

The beginnings of a trip

In preparation for doing last year’s 100km Nightrider charity ride with group of work colleagues we naturally formed a team bond, of people who just enjoyed cycling together. After the Nightrider event we decided that we’d cycle somewhere in 2015 as a team. It had to be a bigger challenge than before whilst not being so silly we’d never make it.
Many months later and the rough idea was formed: we would cycle from London to Paris taking in much of the Avenue Verte, south of Dieppe. With routes planned the trip works out at 320 kilometres, over 4 days, split into two days of 100km, one of 65km and the last of 55km.
This ride would be an aided ride, quite different from the normal London to Paris route where people are guided by a company who plan the route, the hotels, supply food, have support vehicles which carry your belongings and charge a fair bit for doing this.
This trip is a cheap trip, I’m organising the routes, we’re carrying our own gear and it’s going to be fun too. It’s costing less than £250 all in.

To fundraise or not to fundraise

Originally the plan was to get some sponsorship but after a while the group decided to just treat this as a holiday. I on the other hand decided to respond to Lesley from INPUTs question from the previous year “I wondered if you’d like to raise some money for INPUT, we don’t need much to keep going”.
So with that thought in my mind I decided that INPUT Diabetes would be my charity of choice for this trip.
If you’d like to sponsor me the sponsorship link is here.

Why not raise for a bigger charity?

Quite simply, I already have.
As a family we’ve already raised thousands for JDRF and as a national peer supporter I devote a fair amount of my free time to Diabetes UK.
Selecting INPUT was in some ways a difficult decision, given that there are so many smaller worthy charities I’d like to raise money for – DRWF, T1International, Diabetics with Eating Disorders, Seahawks – all of whom never seem to attract the fundraisers the way bigger charities like JDRF and Diabetes UK do.
These smaller charities need such a smaller amount of money to keep going and provide such a valuable service for the people they support.

A little more about INPUT

Unashamedly stolen from their website here’s a little more about INPUT Diabetes.
We aim to help any person who could benefit from insulin pump therapy, and has motivation to use it, to access it through the NHS. Our mission is to support patients by advocating for easier access to diabetes technology across the UK – from insulin pumps to smart glucose meters and continuous glucose monitoring.

INPUT the charity we’ve never needed

We’re the lucky ones, we’ve never needed to use the services of INPUT and although I’ve asked them the odd question we never needed their help, but so many others do. Raising money for them is more about recognising the great job they do advising people of a way forward to get an insulin pump, helping them through decisions about pumps and CGM.
Seeing Lesley at JDRF Discovery Days tirelessly trying to help others is a lovely sight, she’s such a great advocate for pump therapy. Hearing another one of INPUT’s team, Melissa, talk about the Diabetes UK Big Event was also great as spurred me on to looking into using CGM as soon as possible.

And finally…

Just in case you missed it…my sponsorship link is hereLondon 2 Paris Logo + Input Logo

Dr Ponder’s Sugar Surfing Workshop at the JDRF Discovery Day

Dr Ponder's WorkshopIt’s taken me a lot longer to get started on this article than I would have liked but actually it’s done me a favour as Julia has already written a brilliant blog all about it, so I’d suggest you have a good read her article Sugar Surfing with Dr Stephen Ponder MD

So I won’t repeat what Julia’s written but just talk around some of the rest of the event…

The most eagerly awaited Discovery Day?

Over the last few weeks the buzz around last Saturday’s JDRF Discovery Day has been getting stronger and stronger, everyone excited to meet Dr Stephen Ponder in person and listen to his introduction to Sugar Surfing.

On Thursday after I’d interviewed Dr Ponder for Diabetes UK he asked me what to expect at the event and I told him:
“There’s a long waiting list for this event, people are travelling hundreds of miles, some are coming from France just for the day, Twitter and Facebook are buzzing. I expect that you won’t hear a pin drop during your presentation.”
He told me he was excited to be able to present to all of us.

Blasé about travel time

In true Winchcombe style we were running late which annoyed me as I had so many people I wanted to meet and chat with. I blame myself, this was my third time in London this week and it’s “just up the road” (80 miles).
This was the only downside to the day, I wish we’d left earlier so I could spend time chatting with people like Helen & Andy and especially Kevin and Julie as they’d both travelled from France – not together I hasten to add, just to dispel any rumours 😉

A Discovery Day like no other

On arrival we had to sign in, nothing unusual there, except we were in a long queue and there were hundreds of people. Immediately I spotted a few familiar faces whilst I looked around for those I’d been dying to meet; Kevin, Julie, Helen and the legendary Dave Berry. (Dave’s a legend amongst us Diabetes Dads on the CWD UK Dads Facebook group)
I’m sorry to all the people who came up or called out ‘Kev?’ if I didn’t recognise you immediately but my mind was a whizz playing a nanosecond game of ‘Guess Who?’.
In all honesty I really needed this Discovery Day to have about fifteen 30 minute coffee breaks in it, just to have time to talk to people.
It was a delight to hear the joyful screams of people who met for the first time, after keeping each other company through the dark times and middle-of-the-night glucose checks.
This is one hell of a community.

Before the start

I milled around chatting to some online friends I’d never met before, before I spotted Dr Ponder who was busy book signing. ‘Kev’ he said ‘how great to see you again’ which I guess means my interview with him a couple of days before didn’t go badly. Before he had chance to introduce me to his co-author Kevin McMahon they were all called in to the hall as everything was just about to start.
Luckily I found time to have a good chat with Kevin during the main interval, he’s a truly outstanding character with an all encompassing knowledge which stretches far further than mine and I’m a little envious of his endorsement from Scott Hanselman on LinkedIn. I wished we’d had more time to chat.

Feeling sorry for the first speakers

JDRF Discovery Days always have a couple of people speaking before the person who does the science bit and normally this works well but this time I felt sorry for them as in the nicest possible way the audience’s silent ‘Get off’ was deafening.
Elle Dormer was introduced and she spoke about how she had found Dr Ponder online, instantly connected with what he was saying, then attempted to get JDRF and Diabetes:UK involved. I’ve never met Elle before but I imediately took a shine to what she was saying and how she felt, that was until she had a dig at D:UK, I ain’t got time for that, it’s a pet hate of mine and others, because I know that they are the only charity truly able to provide personal support & assistance with school / legal issues for people with Type 1. I know that D:UK, due to personnel issues, had dropped the ball on this one and feel quite bad about it, perhaps Elle didn’t know that though.
Elle, if you’re (still) reading this can I personally thank you for all you’ve done to organise the events for Dr Ponder. You’ve done the community proud. Thank you.

The Sugar Surfing presentations

As Julia’s documented this so well please read her blog for more information: Sugar Surfing with Dr Stephen Ponder MD.

The ultimate way forward?

After my interview with Dr Ponder – or Steve as I like to call him now – on Thursday I was already totally sold on this being a good way forward if Amy chooses to want to do it. That’s why I took her there, so that she could find out information about other ways of dealing with her diabetes. For the record she didn’t really want to go, she had a million other things she’d rather do, as is the way with teenagers, but she went and learned quite a lot. On top of this it reinforced that the things she was doing already were good.
As a family we’ve looked into lower carb eating to minimise glucose spikes and it’s easy to see that it doesn’t suit Amy as a full time way of eating, therefore I see Sugar Surfing at the next best thing. In fact it’s clear to me that a relaxed combination of the two is a very good (but not the only) way forward.

The post-presentation buzz

So many people I spoke to at the event or online afterwards have said how much sense it all made, how there were doing some or all of the stuff already, how they can see that with only some minor changes their kid’s or own hBa1c’s could improve…although obviously whilst that’s a good measure it’s not the be all and end all.
I get the impression from some that they learned nothing, that they did all of this already and that’s great as that means they’ve been Sugar Surfing for some time, that they’ve realised that these little and constant adjustments work well.
For me Sugar Surfing tells us that it’s okay to do this, that we should experiment, that we should approach diabetes management with an agile mind, that we should find what works for us, that we can always learn and improve.
More importantly in confirms that concrete thinking is not the way forward.

Thank you

I’d like to personally thank Team Ponder (Dr Ponder, Kevin McMahon, Patsy, Mackenzie and others) for doing everything they’ve done to get Sugar Surfing in print and for the presentations given on Saturday.

And finally

If you’re interested in learning more about Sugar Surfing please visit SugarSurfing.com and join the Sugar Surfing UK Facebook group which James set up on Saturday.

A slidedeck similar to Saturday’s slides can be found here: Sugar Surfing Master Slide Deck August 27

Talking Sugar Surfing with Dr Stephen Ponder

What a week

duktweetIt’s been an amazing week of privileged invites and questions of ‘why me?’. Firstly, along with Amy I had the opportunity to be part of Dr Partha Kar’s session on transition at the National Paediatric Diabetes Team Meeting in Birmingham and yesterday I had the huge privilege of interviewing Dr Stephen Ponder on behalf of Diabetes UK. When Ruth, my Diabetes UK National Peer Support Manager, asked me if I’d be interested in being part of this I initially thought of refusing, surely there’s other peer supporters more suited but after a while I realised how suitable my experiences and knowledge were. So with nervous ‘Yes’ I signed up.

Meeting the team

Almost immediately my worrying mind was put to rest as I found out I’d be doing this with Diabetes UK National Care Advisor Chris Headland who’s a driving force behind the very successful #Type1Uncut team/videos.

Thinking of some questions…or rather sub-contracting the job

I’ve known about Dr Ponder’s Sugar Surfing for some time and have seen many posts on the Facebook page. Yet when faced with getting some questions together for the interview I felt I knew precious little so I turned to a friend from the Diabetes Online Community, Carolyn, who’s son has attended Dr Ponder’s Texas Lions Camp. Carolyn’s suggestions were great and with a few alterations formed the basis of much of the chat with Dr Ponder.

Obviously too excited

With the interview due to start at 11am I arrived a little earlier…about 2 hours early, I guess I was quite keen. Meeting Chris for the first time was like greeting an old friend, then all the Diabetes UK team and finally Dr Ponder. We chatted for a while about what we intended to do and what would happen next and afterwards just to make sure Dr Ponder was happy. He was.

Dr Ponder and me

A chat amongst friends

“Interview” seems like such a formal word, everyone seemed so relaxed I’d say it just felt like a chat between friends, with two friends captivated by every word their more worldly-wise friend said.
As Diabetes UK are going to release information and hopefully video footage with the next weeks I won’t go into detail about the questions we asked nor the answers Dr Ponder gave, just watch this space for more information.
Part way through the chat Carolyn tweeted to Diabetes UK and I made Dr P laugh when I asked D:UK to reply with a firm ‘No, we’re keeping him’.
carolyntweet1
Before I knew it two hours had flown by and it was sadly time for our chat to end, although Dr P and I kept chatting for a while longer.

Dr Ponder

I think I’m a pretty good judge of character, I can spot an idiot mile off, self-centered people last minutes before I discount them, people with ulterior motives can’t hide it for long. On the other hand the good folk out there just leap up in front of my eyes.
I could be wrong about this but I’m willing to stake my neighbour’s house – not mine just in case I’m wrong – on the fact that you’re unlikely to meet a nicer chap than Dr Ponder.
He seems to have spent an inordinate amount of time trying to make other peoples’ lives better and now with Sugar Surfing he appears to be branching out worldwide.
Of course none of this should be any surprise to me as Carolyn has been saying this for ages and I judge that she’s a pretty good judge of character too.

Sugar Surfing

(For some actual information about what Sugar Surfing is check out these slides.)
As Dr Ponder explained how Sugar Surfing came about I found myself nodding with every word and it soon became clear that this was something we’ve been waiting for. Yes, we’ve been doing things like pre-bolusing, super-bolusing, microdosing, microcarbing occasionally for a while but all by trial and error – mainly error. Amy has previously under her own steam bolused for dinner and waited until at the lower end of her range before eating.
Chatting about the lag of CGM, the lag of insulin, the working time of insulin, watching the CGM curves to bottom or top out I realised we were a family that could probably jump straight in to try Sugar Surfing for real.
Here with the Sugar Surfing book in my hand we had a training guide that no-one had offered us before.

It’s time to start reading that book but not before tomorrow when I have the pleasure of attending the JDRF Discovery Day in London and listening to Dr Ponder for a few more hours, something I’m really looking forward too.

A date with the healthcare professionals at the Lilly conference

The stage at the National Paediatric Diabetes Team Meeting
The stage at the National Paediatric Diabetes Team Meeting

Hoist by my own petard

Last year Amy took part in Dr Partha Kar’s Q&A session at the Lilly National Paediatric Team Meeting in Birmingham. I didn’t think she’d be interested in doing it so I impressed on her how much of a privileged invite it was; how doing it would be good for her; how much more confident she would afterwards. Those words came back to haunt me when Dr Kar asked us again, but this time wanted us both on stage. Amy said, “Dad, it would be good for you, it’s a privilege to be asked” and so on. I sometimes hate that her memory is so good.

At 10:15 our chauffeur arrived and us whisked up to Birmingham where we met Rebecca (who has Type 1) and her partner Jack, both of whom were due on stage with us, not that Jack seemed to know. Partha called, he was running late, to prep us with the plan for the event. But first it was time for lunch and a lovely chat with Francesca Annan who’d popped out of the conference to come and see us, as she and I had been chatting online since last year’s event. After lunch we headed off to be mic’d up, bumping into Dr Fiona Campbell who thanked us for coming up to the conference.

Session One – Ask The Experts

The first session saw Partha ask a panel of experts and the audience of paediatric healthcare professionals about their patients transitioning to adult care but there was an imposter on stage, me. I was so nervous being on the stage in front of everyone, under the bright lights, that when it became my turn to introduce myself all I got out was ‘Hi, I’m Kev, I’m just a Dad, a Diabetes Dad’. A pretty crap intro but actually maybe it wasn’t, after all I had role as an expert I merely do my best to help Amy through her condition.
Partha asked the experts about the issues with adult care before coming to me to ask how I felt about what I’d just heard. “Horrified” I said, no-one seemed to have any faith in adult services in their own hospitals, let alone others. How could this be? Partha asked for a show of hands to confirm this and all hands remained down. Shocking.
I got carried away listening to the eloquent Doctor talk about how adult and paediatric care needs to work together to ease transition as he asked the experts what they would like to say to adult service. My mind was switching thoughts about whether to say ‘communicate way before transition’, ‘work jointly with paediatrics’ or something else. When my turn came I settled for “We’re staying in paediatrics, Amy will stay 14 forever”. It may seem a strange thing to say but it seems that as soon as kids transition to adult care everything they get now disappears and no paediatric team has faith in their adult team. Shocking, really shocking.

Amy on stage at the Lilly National Paediatric Team Meeting

Session Two – Ask the Patients

With session one over I was joined on stage by Amy, Rebecca and Jack, all looking far more comfortable on the stage than myself, who at this point was gasping for a drink of water.
Partha discussed with the audience how the Portsmouth teams work together to ease transition for their youngsters, how they get all the young adults transitioning together and take them into one session whilst their parents go into a separate session.
First Partha asked us all how we felt about the care received and the response was favourable, it seemed we all thought the care we received was good on the whole, although it wasn’t all a bed of roses. It was interesting hearing Rebecca talk about the care she received and Jack talk about what it was like to be a partner of someone with Type 1.
Coping with transition was the next topic and Partha asked Amy if she felt she was ready for it. “Yes, I think so” replied Amy before I followed up to ask her if she felt she was educated enough – Diabetes-wise – to be left to her own devices. Although she felt she would be okay I pointed out that it was not the paediatric team that taught her those skills it was Jane and me, just like other parents do for their kids.
At one point on stage Partha joked about me being “SuperDad” which has since stuck when Amy feels the need to mock me about something. I must admit to prefer the nickname from last year “Sideshow Kev”.

Amy and me on stage

It’s a wrap

Straight afterwards a relieved Amy and I headed off for a large piece of cake each and I made quick work of a post-stage beer.

Final thoughts

We feel quite privileged to have been invited and we’d both do it again.
I’ve learned that answering questions in front of an audience is nervewracking but as no-one knows my story better than me there’s no need to be that nervous. However ad-libbing an introduction is not so easy.
Health care professionals are generally lovely people: from our chat with Francesca to our chat with Dr Campbell to our trip home with Partha, everyone made us feel so welcome, at ease and wanted.

DISCLOSURE
I’m a big fan of disclosure so here goes.
We were paid nothing for this, we took no gifts, nothing.
Ah, well, apart from the beer (me only!), the cake, the lunch and being chauffeur driven there and back.
Lilly and Partha gave us something far more valuable though: the chance to tell our story and help the future of people like Amy when they transition. I’m very grateful for this opportunity.

The German exchange trip – Amy nails it

On Tuesday Amy, now 14, started her exchange trip with her school to another school in Germany, somewhere. As a parent I should actually know where she is but I guess I’m a bit more relaxed about this trip than I realised.
This blog was meant to be just about the trip but it’s turned into a congratulatory one for Amy, who’s doing really well managing by herself. I’ll kind of apologise for this but at the same time I’m incredibly proud of how she’s managing.

The trip

Amy’s been studying German at school for a year or so and on the face of it she is very good, getting A and A* results in exams. She’s staying for a week with a lovely family whose daughter will be staying with us in a couple of weeks and luckily she is very good at English as I know no German.
The school have organised all this, along with the host school organising a week long set of activities and fun events.

Never a doubt

There was never a doubt whether Amy would go on this trip or not, diabetes was not given a passing thought from our side, nor Amy’s, nor the school’s. It’s so refreshing to look back and realise it was never a thing, especially after hearing horror stories of kids not being allowed to go on school trips, some only being told at the last minute.

The Type 1 worries

Whilst Type 1 never featured in the decision making process about going on the trip, Amy, Jane and I felt that we should ask the school to see if any of the German kids have Type 1 and would like to stay with a family who were used to living with Type 1. Amy is more than capable than managing her diabetes on a day to day basis and she thought she could help any of the German Type 1 students if they were worried about coming to England and going it alone themselves. It was a lovely touch from Amy but we’re glad the German school has no kids with Type 1.
We did wonder if Amy’s host family would be worried at all but they raised no concerns once they found out about Amy having Type 1. I think they’re happy that their daughter is coming here as she has daily injections to do and the family will know we’ll be okay with helping her.

Helping other Type 1 kids

Of the English kids going there’s a boy who Amy doesn’t really know, let’s call him Harry*, who’s also Type 1, much more recently diagnosed than Amy. Amy thought Harry would prefer to stay with a Type 1 German family so whilst setting out to find out if there was a German student with Type 1 she was always going offer that family to Harry first. Another nice touch.
At the one and only meeting about the trip we stayed behind to discuss a few Type 1 things with the organiser and heard Harry’s mum nervously asking questions about the trip, worried about how her son would cope if anything went wrong. We’d never met the mum before, Amy didn’t really know Harry either, but she jumped up and said, “It’s okay I’ll give my mobile number to Harry and he can call me if he needs help in Germany”. She then explained that she was confident with carb counting, adjustments and day to day management and that the mum needn’t worry. Proud Dad moment.

So how’s it all going, glucose wise?

Amy uses CGM (Continuous Glucose Monitoring) on and off and is using it in Germany, on top of that we use xDrip and Nightscout for night time. We had decided to use it for Germany so that I could help Amy with her recent-ever-changing-basal-requirements but between lack of WiFi, phone 3G problems and being relaxed we’ve not actually worried about it. It was Amy who got it set up in the end and it was two days before I actually looked at the data so it was pleasing to see how well she is doing, without asking for advice or worrying or letting it stop her.

Germany NightscoutNightscout graph sample over 36 hours

From the 36 hour trace above, Amy’s averaging 6mmol/l, with maximum of 10.8 and a couple of hypos of 3.0 and 2.9. Not bad considering she was at a theme park and estimating carbs has been a challenge at times.

* some names have been changed to protect the innocent 😉

#PWDC15 – The People With Diabetes Conference – The Sessions

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

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

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

pwdc15 agenda

Session one – Partners’ Moan

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

Session two – D in Teenagers

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

Lunch and time for Amy to shine

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

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

LCHF-dekal
…if you want to

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