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London to Paris 2019 cycle videos

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kev at paris 2019In June I rode to Paris with a 10 mums and dads of kids with Type 1, plus 16 year old Jack (who has Type 1 himself).

Finally the videos are done.

It was ridiculously hot, riding in temperatures up to 43 Celsius, that made it quite hard work at times. We managed to minimise some of the heat by leaving our hotels really early but it still wasn’t enough, especially on the hottest day, day 3.
It was a self-supported ride, where we carried our own luggage, tools and spares, and were responsible for fixing any mechanicals. Out of the four Paris rides I’ve done we experienced the most issues this year: from Svenia’s tubeless tyre puncture woes; to Steve’s broken spoke; to Andrew’s cracked wheel rim 30km from the nearest shop!
The heat and issues were all overcome and we had a lot of fun, it really was a great group. Caveat: every trip has been great fun, brilliant team work and camaraderie, lots of beer and wine too.
The end result was we raised £12,000 for JDRF.

Here’s the videos from this year. Sit back, enjoy, and if you think you might like to do this let me know. If you want to do your own trip then full planning information is available at london-to-paris.winchcombe.org

https://www.youtube.com/watch?v=gW3_zP4nHmA

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

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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’ 🙂

Us Type 1 Cyclists* Need Your Support

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

RL100JDRFAnd then it happens.

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

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

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

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

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

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

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

Diabetes Dads do Nightrider (again)

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

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

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

We had lots of fun.
Take a look.

(Here’s last year’s video)

JDRFDadsLogo

Nightrider 2016, the Diabetes Dads and the Videos

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JDRFDadsLogoShortly after last year’s Nightrider there was a little conversation on our UK Diabetes Dads group. I suggested we should try and get a large Dads team together and immediately got two Yes’s from Nightrider stalwarts Dave and Andrew. Little by little more Dads joined ending up with 23 Diabetes Dads and some friends. In total there were 30 of us riding with 27 of those fundraising for JDRF.

A little motivation & from nothing to everything

Many of the Dads have personally thanked me for organising and motivating them to do Nightrider but the truth is I did very little, they wanted to do this and everyone motivated everyone else, with tales of training rides, pictures of bikes, etc..
A fair few of the Dads didn’t even have a bike and stories such as Vincent’s weren’t uncommon: Vincent last rode a bike on his paper round 25 years ago. Alistair’s story was similar. Others such as John signed up for the 60km ride but soon got persuaded that the 100km ride was achievable.

Lighting up the roads of London

After doing Nightrider in 2014 I knew our large team would get split up so I search for lights for our bikes and found these which I’ve gotta to say looked by far the best lights at Nightrider. It gave us the chance to display multiple images throughout the whole ride, include JDRFs logo, the JDRF/Dad logo I created (see top right) and others such as the Nightscout logo. In my opinion these were the best lights of any bike doing Nightrider.
httpv://www.youtube.com/watch?v=DRTMcmgu87s&feature=youtu.be

Team motivation

makereadyyourbikeStrava and Facebook are great motivators, people put up their rides, you see it and feel guilty you haven’t ridden for x days, so you go out for a ride and post it on Strava/Facebook afterwards. And so on.
And on.
With so many of us in the team the rides got longer, the bravado better, the team closer and the jokes worse. Far worse [thanks Vincent 🙂 ]. But it was turning into a great team and forgetting Nightrider we all just wanted to meet up and chat and joke.

Nutter on a bike

My RideLondon 2015 cycling buddy from last year Paul Smart made a heroic decision that to prise hard earned cash away from his friends Nightrider would not be enough. No, 100km is far too easy (!) so Paul planned to ride to London from west of Birmingham, leaving on the Friday and cycling 100 miles to Aylesbury before finishing the other 50 miles on Saturday morning and then taking on the Nightrider that night.
Nutter.
But he did it, in fact he smashed it.
Legend.

25 Lamb Bhunas

ddadscurry
It seemed like a good idea at the time with Lahore Kebab House being a firm favourite of mine and Andrew’s: let’s all meet and have a curry before the ride.
Right now I can realise that a curry before cycling 100km isn’t such a good idea but in truth it went done a storm, especially Lahore’s legendary lamb chops which we ordered 6 plates of.

Nightrider dawns…or rather dusks

Nightrider2016Team groupshotThe curry, or rather the tube to/from had made us late for registration, it was bedlam, no-one knew where to queue up to get their ride numbers and hi-viz vests. Luckily Daniel’s wife Julie went into event organiser mode and sorted us out, thank goodness as we’d never have set off for ages otherwise.
As it was our supposed start time of 11:00pm had turned into 11:24pm.

And the ride?

Well, in short it was brilliant but I’ll let you watch these two videos to find out.
First it’s mine, turn your speakers on….
httpv://www.youtube.com/watch?v=mzPRRGI56mA

And second it’s the one shot by David Reid, featuring selfie-idiot me:
httpv://www.youtube.com/watch?v=L1wxM-L16us

A lovely fundraising amount

Finally, the whole point of the ride was to raise money for JDRF and I think we did this pretty well.
My personal thanks goes out to Stuart, Matthew and Daniel for the sheer volume of sponsorship they got it. Amazing effort lads, well done.
DadsNightriderTotal

JDRF’s #Type1Catalyst at Parliament

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JDRF Westminster Palace reception. Theresa May, Mims Davies, Amy and Kevin Winchcombe. Copyright John Nguyen/JNVisuals 25/04//2016

JDRF Westminster Palace reception.
Theresa May, Mims Davies, Amy and Kevin Winchcombe.
Copyright John Nguyen/JNVisuals
25/04/2016

It was a surprise when I opened the email inviting Amy and me to attend a Parliamentary reception, hosted by Jamie Reed MP and JDRF. What an opportunity not to be turned down, a chance to educate some MPs in the ways of Type 1 life.

Amy and I decided to make a day of it as going to London isn’t a regular occurrence for us. Arriving at Kew we headed straight for the one and only place on both of our minds, Camden. We both love it there, Amy especially and I made sure I kept my credit card firmly in my pocket, nowhere near Amy’s eyes and all those clothes, boots and all things funky. On the downside Suggs was nowhere to be seen.

Off to Parliament and nervously I waited in the security line wondering how they would react to Amy’s xDrip device, surely they wouldn’t be bothered about a collection of electronic components, with dodgy soldering, wires everywhere? Surely not…hmmm…well maybe. Turns out they weren’t bothered at all and didn’t even ask Amy to explain what it was.

Parliament started with a set change for Amy, then a hypo which took ages to clear and with the thought of standing up for two hours I kind of regretted the 3 or so hours spent wandering around Camden’s maze.

Our MP, Mims Davies, was keen to attend the event, accepting my invite immediately, and it was great to see her again and chat about Amy’s life with Type 1 and some of the research being done. Mims picked up a copy of JDRF’s Type 1 Research Today report published that day, something I’d not had a chance to read yet. Mims is always keen to learn more about Type 1 and Type 2 and that’s something we’re grateful for. Afterwards Mims published a campaign article More Research Needed for Type 1 Diabetes.

We went to get a professional photo done with Mims and the Home Secretary Theresa May was there so we got the chance to meet her. She was lovely with Amy, discussing favourite hypo treatments and how she prefers Jelly Babies to Dextro, which is Amy’s preference.

JDRF Westminster Palace reception. Theresa May, Mims Davies, Amy and Kevin Winchcombe. Copyright John Nguyen/JNVisuals 25/04/2016

JDRF Westminster Palace reception.
Theresa May, Mims Davies, Amy and Kevin Winchcombe.
Copyright John Nguyen/JNVisuals
25/04/2016

CaptureJamie Reed opened the talks with a great line saying we are the people we have been waiting for and how we can make the difference. Nodding in agreement I felt like shouting WeAreNotWaiting but the introvert on my shoulder got the better of me, thank God. Further talks about research which ended with Karen Addington, JDRF’s Chief Executive, who was a pleasure to listen to and brought a lump to my throat when she proudly held a ViaCyte’s stem cell ‘sack’ which is a very exciting development.

I was very honoured to be introduced by INPUT’s Lesley to Professor Jonathan Valabhji (ational Clinical Director for Obesity and Diabetes at NHS England) and as you can imagine I wasted no time in discussing Nightscout, xDrip and the whole DIY movement. He was very interested so I offered him the chance to learn more with a proper demo which I hope he’ll take me up on. I may not like public speaking but there’s something about Nightscout which overrules all that.

The day itself was made so much better given the number of people I knew there, Ellie, Lydia, Helen, Jeff, Lesley and so many more. Meeting Carl for the first time was great and I can’t wait until our team of dozens of Diabetes Dads cycle around London overnight in the Nightrider, it little over 4 weeks. It was lovely to meet JDRF’s Karen, Sarah and Kris again and Sarah did a brilliant job of organising it. I felt we needed several hours just to chat, but isn’t that the way in these Diabetes community meet ups.

The technology is great but the people are just fab.
“We are the people we have been waiting for”
Yes. We are.

JDRF Discovery Day Bournemouth 5/3/16

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nnn-JDRF logo cropped_2“Call me Kath” said Professor Barnard when I introduced her to Amy and Jane. Moments before I’d wished the earth would swallow me up as moments before that Kath had recognised me (from Social Media avatars/photos) and I hadn’t recognised her. A tad embarrasing and not the best first encounter. Still we we’re lucky that Kath could make it to the event as years ago I was almost responsible for her untimely death, after telling her how simple it was to replace a broken dimmer switch. Turns out it is simple if you’ve done it loads of times, not so simple if you haven’t. Anyway, I was pleased I hadn’t killed Kath and I’ll be careful not to discuss electrics with anyone else ever again.

Back in early November I had contacted JDRF South to ask if myself and others could present Nightscout at the Discovery Day in Bournemouth. Imagine that, presenting to a Discovery Day, little old me. I don’t even ask questions at events, let alone present but Nightscout is different, you know the world doesn’t know about it and you want to make people aware. Nightscout however is unregulated and has not past clinical trials so it’s very understandable that JDRF couldn’t let me talk about it.

And JDRF had other plans for the event in the form of the very well respected Professor Katharine Barnard. It’s unusual that a Discovery Day has just one speaker but when you’ve got the chance to give the floor over to a renowned Professor then you do, you most definitely do.

I’ve been fortunate to meet and chat with several Professors this year, Simon Heller, Helen Cooper and now Kath. Here’s the thing, they’re all normal, brilliant but normal, experts in their field, but normal. A far cry from the stereotype British films and TV would have you believe.

Being a mum of a child with Type 1 the down-to-earth Kath found a very warm and engaged audience. This was no presentation though, it was almost a chat amongst friends, a discussion group, a think tank. Laughter rang around, interspersed with more solemn moments as some said things they about Diabetes which have a negative impact. But Type 1 crowds are never down for long and out poured many positives.

Kath picked up on some points and told us it’s okay to feel like that, it’s normal. This meant a lot to many of us who naturally beat ourselves up on a daily basis for not doing quite as well as we think we should, or could. In reality we’re all doing an absolutely brilliant job, but how many of us actually recognise that?

One standout for me was something I’d read before but this time in sank in properly.
Kath asked “Well controlled Type 1 Diabetes is the cause of ?????’
‘Nothing’ answered Helen in the audience.
Absolutely.
We’re all so worried about complications but are actually helping our kids tremendously.
I walked away quite proud that we’re helping Amy achieve ‘nothing’.

In what seemed like no time at all Kath’s hour was up and we all felt sorry it was all over. But then it was time for the peer support socialising and properly chatting with Steve, Becky, Matt and Sonal as well as the usual JDRF Discovery Day chat with Lesley from INPUT.

I loved this Discovery Day and if I ever get the chance to see Kath present again I’ll be there. You should to.

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

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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

Blogaversary 2 on World Diabetes Day 2014

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Spinnaker Tower on World Diabetes DayIt’s hard to believe yet another year has gone by in the Diabetes world, here’s a little bit about what’s been going on.

But first, it’s my blog’s birthday; 2 years old today (well actually yesterday but let’s not worry about that minor fib). Its visits have doubled since the first year’s statistics: I’m pretty darn amazed with that. What really pleases me is that I can see from the stats that people have searched Google and found the answers in my site, that’s kind of why I started it in the first place.

In December 2013 my daughter Emilia decided to take part in the TrialNet study at Bournemouth. It was two long months before we found out her results (and mine) were negative which pleased us, although we were saddened to hear that a friend’s result was positive.

Christmas and Amy’s Diaversary (29th Dec) came and went and her 6 month old Animas Vibe insulin pump made life easier during the festive period.

Amy and KevEarly in the new year I started my shifts as a national peer supporter for Diabetes UK, answering phone calls once a week and helping people find solutions to problems, or giving them ideas from the experiences we’ve had in the family. It’s proved to be really rewarding.

AccuChekInsight1March was a whirlwind on a particular day, the 15th, which saw us have two back-to-back diabetes events, doing their impressions of buses and policemen (none around, then there’s two). The first was an education day held by the local Type 1 families group Seahawks where amongst many other things I got to check out Roche’s latest pump, the Insight. It a great event and I was sad to rush away from just after lunch. But rush we must as Amy was doing a sponsored Indoor Skydiving in aid of JDRF along with lots of kids we knew pretty well; she loved it, every minute of it.

dblogweek squareIn May I joined in with blog week and I remember how nervous I felt when releasing my poem for Tuesday’s entry: A Childhood All Gone. It turns out I needn’t have been so nervous and I think that’s turned out to be my most favourited/Retweeted/Liked blog post ever.

flatline-dayEarlier in March Animas got the green light for use of the Vibe pump with Dexcom CGM for children, something we’d be waiting for since June the previous year. One year after getting her pump Amy went live with CGM and what an eye-opener that turned out to be.

twitteravatarJune also saw me cycling 100km around London overnight with a group of friends in the Nightrider charity event, where my local group of 8 raised £2700 for JDRF. On the plus side the training for it and switching to a healthier diet has also seen me shed 1.5 stone.

My personal highlights for this last year though involve each one of my kids. First Amy spoke in front of hundreds of Paediatric Health Care Professionals in a transition chat set up by the wonderful Dr Kar from QA Hospital in Portsmouth. Secondly, it was Emilia’s prom and a combination of pride and tiredness (from Dad-taxi pick ups at 3am) made me quite reflective: The Forgotten Sibling.


wpid-20140921_133723.jpg emiliaswing

Portsmouth’s second SweetMeet – another privileged invite

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amyprize2Amy shows off the carb counting scales she won at the SweetMeet

In the middle of a busy weekend – clinic yesterday, TeamBloodGlucose cycle ride tomorrow – Amy and I had an invite to the second SweetMeet organised by the team at Portsmouth’s QA hospital. For us it was another privileged invite being personally invited by Dr Partha Kar for the second year running.

Amy and I met Laura and Tanwen as soon as arriving, then with a breakfast bacon butty in hand had a nice chat JDRF’s Sue and DRWF’s Lee. Helen the pump rep from Roche was there and to our surprise our Animas rep Emma arrived, pleased to see Amy and to hear that she was getting on well with her Dexcom CGM, which Emma trained us in only two weeks ago. It’s really lovely coming to events like these and knowing so many people, it’s like one big family.

Kicking off with a great team

SweetMeet2 was officially opened by Lisa who referred to herself as just a nurse before introducing the team who had given up their spare time. With the plan for the day read out Dr Partha Kar stepped up to start the day off, but before doing so he praised lead nurse Lisa for the dedication and hard work she puts in keeping the department running.

66 years and the future

nhs creation leafletWith the NHS being formed 66 years ago to the day Partha outlined the changes in the NHS and in particular funding, explaining that funding had been matched to requirements from 1948 until a few years ago when funding plateaued, starting a funding gap which is unlikely to close any time soon. But there is hope and it will be found by making sure the right people perform the right jobs, freeing up the Wizards (Consultants) by getting the Gatekeepers (GPs) to perform the tasks they can – these references coming from Nigel Mathers and Paul Hodgkin’s 1989 story about the NHS “The Gatekeeper and the Wizard”

Speed-dating with the professionals

Next up it was time to speed date with the professionals, with the audience staying at their tables and professionals moving around the round to ask/answer questions during each 7 minute slot. Seven minutes goes very quickly when questions are being asked and it’s amazing how much you can cover during that time.
The podiatry and retinopathy sessions explain a lot about the processes that we know very little about and gave answers about what you should expect (nerve tests on bottoms AND tops of feet) and by whom (GP surgery nurse).
Partha did a session and an important message came across: people can and should help themselves, a message I’ve lived by since discovering the #DOC (Diabetes Online Community). The bigger question though is how to get those not already engaged to become so as those at the SweetMeet were clearly engaged already.

My favourite speed date

My favourite speed date – this sounds awkward 🙂 – was with Dr Iain Cranston, who chatted about Abbott’s Flash Glucose Monitoring, something I’m looking forward to being announced officially in September at EASD in Vienna – like many I’ve had an invite to go but can’t quite justify it. It has the potential to revolutionise finger-stick tests as it promises to do away with them, instead relying on swiping a NFC device across a sensor which is changed every two weeks. I didn’t think much of this technology initially but when I realised that it stores the last 8 hours of tests I realised it could be used as a non-alerting CGM, which is just fantastic. Fantastic that is if Abbott pitches it at a price to rival meter strips.

Breakout session 1: are all carbohydrates equal?

This year saw the introduction of two breakout sessions, with Amy and I going to the one of carbohydrates.
With a session of 45 minutes, 15 people and two dieticians it was like being a kid in a sweet shop, although obviously the first rule of SweetShopClub is that you don’t talk about sweets in front of dieticians. 🙂
Starting off with some simple carb-counting we moved on to GI which raised some interesting discussions, based bolusing for low-GI and wave bolusing techniques for pump users.
It was the first time I’ve been able to talk sensibly with a dietician about LCHF (low carb high fat) diets, their effect/usefulness and more importantly whether they’re suitable for kids, or can be adapted to be so.

Breakout session 2: new developments for type 1 diabetes

Dr Iain Cranston held our second breakout session which started with us all stating the new developments we wanted to know more about. With islet transplants and stem cell research already on the board (two things which could go hand in hand to get people off insulin) I offered a couple of other things: smart insulin and inhaled insulin.
Dr Cranston’s knowledge of developments is great and filled us all in on each of the developments, answering my questions about beta-cell replacement whilst super-T cells still exist.
How often do you get the chance to ask questions like this, that’s the beauty of something like the SweetMeet. I have a feeling that if the allocated time hadn’t run out Dr Cranston and I could have chatted about stuff like this for hours.

A patient’s experience: educate yourself

Lee Calladine, spoke about his life with Type 1 diabetes which he was diagnosed with aged 33. As DRWF’s Event Organiser Lee organises events such as the DRWF Wellness Day South which I attended two weeks ago as well as last year.
Lee’s message fitted in nicely with Partha’s: educate yourself, find out about your diabetes and your gains will be great. Since educating himself Lee feels more in control, has got his HbA1c lower and minimised his risk of complications and that’s something we all want.

Thanks Sue

The second SweetMeet was a huge success in my opinion and Sue, one of QA’s dieticians, should be thanked by all who attended for organising a great event. Well done Sue, we really enjoyed it.

And finally, Amy wins another prize

At last year’s event Amy won a bottle of champagne in the carb counting quiz, which of course was commandeered by myself and consumed shortly thereafter. With high hopes she entered this year’s quiz and alongside a few others won another prize, this time a set of Rosemary Conley Nutritional Scales which will hopefully be very useful for carb counting.
Here she is with them:
amyprize2

Nightrider London awaits

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NightRider2Three days from now, at dawn on Sunday, I should have just finished cycling 100km around London, raising money for JDRF. I truly can’t wait to do it particularly as I’m doing it as part of a team mainly consisting of my work colleagues.
We start off from Crystal Palace at 10:35pm anti-clockwise through Tower Bridge, Canary Wharf, Olympic Park, Alexandra Palace, Waterloo, Whitehall and The Mall before ending up back at Crystal Palace.

A team grows
Last year I read about Nightrider shortly after cycling next to Gav in his GBR30/30 challenge and it captured my imagination, so I decided to do it in 2014, probably by myself.
Discussing it at work and Jon decided he’d do it as well, perhaps we could ask a couple of others he suggested. A few chats later and the team grew to 5 from work and Steve who lives close by. A month later and we’re up 8 cycling for JDRF and 3 cycling for CancerResearchUK. In total there’s 21 JDRF riders starting from Crystal Palace including my team plus Nick, Mark H, Andrew whom I know from either Twitter or the Cycling at JDRF Facebook group. There’s also a lot of JDRF riders starting from Alexandra Palace about an hour later.

A few of us enjoying a rest after a cycling sportive: Mark P, Kev, Jon, Mark H
jdrf cyclists at bbq

Raising funds
We’re riding for JDRF and they’ve set a target for each person of £175 per person, on top of the £39 registration we’ve each paid. For this £175 JDRF have bought a charity place from Nightrider for £60 and on top give each cyclist a JDRF cycling jersey, which in itself must be worth £35. So in theory JDRF don’t get much money in from this event, just £80 per person if they reach their target.
A few days ago I was concerned we wouldn’t reach out target, it sat £400 short of our combined target of £1400. In the last few days though sponsorship has come flooding in and we’re close to £2000 already.
Sponsorship page is here if you want to see how we’re doing…or donate.. bit.ly/nightridertf.

Training, training, training
For some cycling 100km is easy but there’s only one of our team – Steve – who could boast this, with Shaun coming a close second, for the rest us it was going to take a fair bit of training. So off we set on our first training ride back in January, a mere 30km but a distance which seemed daunting at first.

From our first training ride
Juli, Kev, Jon, Tim, Sue, Mark, Steve, ShaunNightriderTF-1

Training rides got longer week by week, some hills got thrown in and the weather started improving. A few other friends/colleagues started joining in the rides and a few of us managed to get out each weekend.

A hilly ride around the South Downs
NightriderTF-2

We set a target for 60km on April 21st when many of us entered a local Sportive. Five of my team did it along with two other Nightriders, Nick (coming down from Derby) and Mark (coming from London), plus a friend Gemma. That turned out to be a great ride through lovely country roads and finishing with a nice BBQ afterwards.

Gemma, Kev, Juli, Jon, Mark P, Nick, Mark H, Sue
NightriderTF-3
Our first night ride last Friday
Tim, Jon, Kev, Sue
Nightrider-TF-5

#DBlogWeek 2014 Day 4 – Mantras and More

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dblog week 2014Thursday’s topic:Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day. Or more specifically, a hard diabetes day. Is there something positive you tell yourself? Are there mantras that you fall back on to get you through? Is there something specific you do when your mood needs a boost? Maybe we’ve done that and we can help others do it too?

Amy on Indian trainFrom day one – okay it was probably more like day 101 – we tried to get Amy to be proud of her diabetes and not let it stop her achieving whatever she wanted. It’s a bold statement to make and one that on some days seems a mega-distance away but on the whole it’s achievable and spurs her and us on to do things that we probably wouldn’t have done if she’d never been diagnosed. It was around day 101 that we started planning our month long backpacking trip to India, something which made us very nervous – because of Diabetes, not India – but something which made us feel much stronger upon our return. Whenever I see photos of that trip it reminds me what a leap of faith it was, how we dealt with it and the sense of achievement we got from it. On top of that it was a bloody great holiday.

Us and Gav at end of GBR3030On Saturday at a JDRF Discovery Day in Reading there was a talk by Gavin Griffiths (aka ‘Diathlete’) who runs ultra-marathons without letting Type 1 Diabetes stop him. He started by asking the audience whether they saw Type 1 as a good thing. No-one held up their hand, although I raised mine halfway for a second before putting it down. Of course I couldn’t feel that it’s totally a good thing, to see what Amy has to go through, but I truly believe we’re all better people for it. Gavin has showed that with the right preparation and training it’s possible for someone with Type 1 to running the length of Great Britain (900 miles!).

Pretty in pinkTaking part in Gav’s GBR30/30 challenge made Amy even more determined to kick diabetes’ arse and it increased her advocacy for Diabetes. I see this in effect whenever we go to a diabetes event and someone sees her pump, which happened like clockwork at the JDRF event last Saturday. Amy had 6 or 7 adults and children all listening to every word she said as she described how having the pump has made life so much better for her and why it’s so ‘awesome’.

So our mantras could be that ‘diabetes will not stop us’ and ‘we are stronger now than before’. Remembering the good things we’ve done certainly helps when feeling down a bit.

But those mantras are no good when you’ve just had enough.

Luckily last July we attended a great event named ‘Greater Minds Inspire‘, organised by Zoe and Hedgie Pricks Diabetes, which had many inspirational people with Type 1 each talking about their achievements. Every one of them was brilliant and Amy certainly started to see that she needn’t stop doing things because of having Type 1.

But it was a video from Joe Solowiejczyk which was shown at the event that I remember when things are getting a bit much I remind myself of what he said, especially about meltdowns (about 1 minute in).
httpv://www.youtube.com/watch?v=SzEuEl4GiuU

I really like the bit about planning to have a meltdown day, seems like a thing we should plan too. We let Amy have food-meltdown-days when she has whatever she wants and we deal with any glucose level issues later. She still carb counts during these days but with so many boluses and the stacking of insulin things inevitably go badly. But within 24 hours any ‘bad’ levels are forgotten and all she can remember is that she had a cracking food day.

dblog week 2014

Type 1 diabetes and young people – Rt Hon George Howarth, MP

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Parliament_at_Sunset

I’ve just finished listening to (a lot of) Rt Hon George Howarth MP’s parliamentary session entitled Type 1 Diabetes and Young People. It was a breath of fresh air to listen in the public eye who ‘got it’, who explained everything correctly, who wanted more support for people with Type 1 Diabetes.

Here’s a link to a stream of the debate: Type 1 Diabetes and Young People.

Mr Howarth’s own knowledge of Type 1 Diabetes is for me a sad and alarming story. As a parent of teenager with Type 1 Diabetes I worry enormously about stories like that of his daughter. Clearly if I ever meet Mr Howarth we’ll get along quite well.

So it was a first for me, listening to some ‘boring’ (perceived, not actually what I felt whilst listening) speech and actually understanding it, agreeing with it and at the end wanting to applaud Mr Howarth for holding this session. It was great to hear him praise Zoe Scott’s Hedgie Pricks Diabetes and Diabetes with Eating Disorders amongst other organisations and charities. Diabetes UK’s and JDRF’s programmes and initiatives were covered well.

What amazed me the most was the knowledge of, and some of the issues raised by, other MPs who (I guess) have little exposure or knowledge of Type 1 Diabetes. One MP raised that education needs to be given to those with Type 1 to help them avoid diabetoketoacidosis (DKA) due to Diabulimia. Another MP raised the issue about schools not supporting children with Type 1 and those that cannot inject their own insulin.

Between them they covered many things, such as the benefit for some in using insulin pumps; the Artificial Pancreas project funded by JDRF; about transition from paediatrics to adult care based on clinicial need rather than age; support and training for psychological issues; about the DWP and issues with awards of Disability Living Allowance.

This was all great to hear, that those with influence know a lot of what they are talking about and are behind many initiatives to bring Type 1 Diabetes more support than it currently gets.

Personally I’d like to thank everyone involved for taking part and especially Rt Hon George Howarth for this debate.

Whirled diabetes days: a new blog, one year on

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blog announcementAnnouncement of new blog, November 2012

On World Diabetes Day 2012 our new blog, Circles of Blue, went live.

What a year it has been.

A good year.
A year of dealing with diabetes proactively.
A year of diabetes advocacy.

 
whirl (hwûrl, wûrl)
verb. whirled, whirl·ing, whirls
    1. To revolve rapidly about a center or an axis.

 

“there’s now multiple series covering diagnosis, getting an insulin pump and travelling to India with Type 1”

The blog was officially released on World Diabetes Day 2012 although I let everyone have a preview of it a few hours before that day dawned. Since then we’ve written 70 posts over many subjects and there’s now multiple series covering diagnosis, getting an insulin pump and travelling to India with Type 1. It’s fair to say I’ve been blown away to how it’s all been received, not just by the #DOC (Diabetes Online Community) but by the thousands of individuals who’ve happened to find an article of use to them thanks to Mr Google. It pleases me to see that people have reached my blog after search for things like ‘can a diabetic travel to India?’ (answer:yes) and ‘can a person with diabetes get a fast pass at Alton Towers?’ (answer:yes).

It’s been a year of reflecting

Well, actually it hasn’t been a whole year, most of the reflecting was done in November and December when Amy, Jane and I wrote our diagnosis stories – full series of articles is here. Occasionally I try to re-read them but I rarely get to finish them.
One of the most read areas of the blog is the series about travelling to India with Type 1 Diabetes with the top page of choice being Cooling Insulin with Frio Wallets. I really enjoyed re-working my original blog about that trip – Monsoon Meandering – reflecting on the epic trip it was and making it useful for any people with diabetes who are thinking about travelling there.

It’s been a year of learning

This time last year we knew very little about diabetes, we just coped with it on a day-to-day basis.
Amy had just got an Aviva Expert meter which made life so much easier that I started asking the #DOC about insulin pumps. It took a while to get Amy interested, and further time for her to not faint whenever they were mentioned, but in March 2013 Amy decided she wanted a pump and on the morning of the 20th June she took her last scheduled injection and starting pumping a few hours later – it’s changed her life in so many ways.
Now, we’re looking into CGM (Continuous Glucose Monitoring) and hope that early next year Amy will starting using that.
All of this learning wouldn’t have been so easy to obtain without my friends from the #DOC, so once again I thank you all for that.

It’s been a year of attending events and meeting people

“Since April I’ve met with around 40 – forty! – people I know from the #DOC”

Starting in April we met our first two people from the Diabetes Online Community (#DOC) – Laura and Anna, who gave Amy a demo of their pumps.
A few days later We went to our first official event the JDRF Discovery Day in Bristol; the Portsmouth “SweetMeet”; the JDRF Discovery Day in Dorset; the DRWF Wellness Day; the Greater Minds Inspire event; the Diabetes UK Big Event; the Bristol JDRF Walk to Cure.
In May we took part in Gavin Griffiths’ GBR30/30 Challenge, with Amy cycling 30 miles in one day and ending it with a run up a big hill carrying Gav’s Olympic Torch.
At the end of June we had a great two days in Alton Towers with Derek, Clare and Chloe, meeting other #DOC people Philippa and Vanessa.
Since April I’ve met with around 40 – forty! – people I know from the #DOC and more importantly Amy has met some other kids with Type 1 Diabetes; they’re sure to be friends for some time.

It’s been a year of stepping up our game

Amy became as JDRF T1 Ambassador and wrote a two page article entitled – Adventures with Type 1 – for their T1 Kids magazine, appearing on the front page
I’m halfway through becoming a Peer Supporter for Diabetes UK, where I’ll man a phone line for a few hours a week, helping people with any type of diabetes. I’m excited but also nervous about this opportunity as I know I might not have the answers they need but hopefully I can help them.
Earlier this year I was asked by a neighbouring area’s diabetes special nurse to introduce parents of newly diagnosed children to the benefits of using Social Media for diabetes. I ended up creating a leaflet entitled ‘How social media helps us with Type 1 Diabetes’ which has been well received by many, be they health care professionals, newly diagnosed people/parents as well as the diabetes community at large. I’ve been so grateful to the endless retweets, posts and linking done by others in getting this leaflet out there and feel sure it’s got to many of the right people.

The icing on the cake has just arrived

Whilst writing this article a new tweet flashed up on my screen. I was amazed at its content and I couldn’t be prouder than to have a leading, respected Doctor mention this blog.

roche reachExcerpt by Dr Kar, Roche Reach magazine, Winter 2013