Wondering Outside the Village: My Adventure at Stanford Medicine X

This is the first of a series of blog posts in which I will recount my adventures at Stanford's Medicine X, Conference: An experience which has changed my life, and I will not soon forget. :-) 

The Palo Alto Westin Hotel is a small hotel tucked into the Palo Alto scenery, and spitting distance from Stanford University. Warm, and welcoming, employees genuinely seem to care about one's lodging needs. As I checked in (having completed a journey that began 9 hours before, at 2:00 AM, in Ames, Iowa), I gave the attendant $50 of my last $71, for a 'security deposit.' I really hadn't planned on THAT, so I was hoping the rest of the day wouldn't require any more money from me. (I also hadn't planned on everyone, and their mother, requiring a tip from me.)

After settling in, I went about the business of trying to find out what I was supposed to do next. I was a little outside of my comfort zone... Okay, a lot outside my comfort zone. Okay, "The Village" level outside of my comfort zone. I hadn't traveled anywhere in 5 years; heck, I hadn't even left my small town to go anywhere in the nearby vicinity, in 5 years. When you have no car and minimal financial resources, the world sort of closes in on you. Social media, and walking everywhere, are about the few things you have.

I was in the most expensive city in America, where I knew no one, where I had $21 left, where I didn't know how to use my loaned smartphone, and where I had planned to attend a session in 15 minutes in some supposedly nearby street. "Just turn right on University Avenue, up ahead," said the bellhop. Except, there was a train running through it. Yes, a train. Before I had a chance to wonder much farther, two gentlemen who seemed about equally lost -- but who knew how to use their smart phones -- asked me if I was going to the Stanford startup session. "Yes, I said," so I followed them. And follow the leader is what I did... all weekend, pretty much.

What is the Angry Type 2 Diabetic doing in Palo Alto, you ask? Attending Stanford sessions, nonetheless? Well, in case you missed it (which I almost did), last Spring I was selected (among many applicants) for a scholarship to attend Stanford's Medicine X Conference, in Palo Alto, California. I had applied at the suggestion of a friend, and quickly forgotten about it. :-)

At the time I didn't know much about Medicine X... but my curiosity was piqued. I knew the things I believed in: the patient, the patient's ability to quantify their experience, and social media to glue it all up together... and now Stanford University, via Medicine X, seemed to want to address all those things. Nothing makes one feel better than when the 'crazy' things one rants about get acknowledged by large institutions.

So, I took them up on their offer. I was, and am, confident that this is the future of medicine. It is, in my mind, one of the only ways to guarantee the patient has a voice. A voice that isn't clouded by the need to see 30 patients or more a day, 6 minute doctor sessions, and clinicians who are hell bent on not deviating from anything they learned back in 1976. A way to circumvent the little treatment and education patients with type 2 diabetes are receiving. A way for patients with limited resources, to make the most of their health situations.

But... after a week of being stranded at home, with the flu, and not being able to work, the little savings I had for this event disappeared in the form of medicines and bills. So I almost didn't make it out there. Almost. I have my family to thank for making this event happen for me. For believing in this little wild adventure on which I was about to embark.

And boy was it an adventure.

I really wasn't sure what to expect... and thinking I'd immediately see many of my fellow diabetes advocates, I had worn my fun-loving shirt "Diabetics Luv Pricks," for my travel day. It really made me an attention magnet, in ways I didn't want to be one. hehe "So what are YOU doing here?," "What exactly are you going to bring to MedX, with what you do?," "What's your role in MedX?," "I thought this conference was just for startups," etc.

People were really proud of being startups of their own companies (even if it was just a company of 1 or 2), and people were really... PROUD of being 'in the center of the universe,' as it was put to me more than once. And... it was a bit unnerving, to be honest.

Just like I did on my first day of college, I called home, and cried, and begged to leave. And just like on my first day, thank goodness I didn't.   :-) Culture clashes can be rough things.

The Goal is Food Independence

It's been a couple of months since I've shared anything significant with my fellow readers.

It's not that I don't appreciate you; nor it's not that I had nothing worthy to share. But, as the pressure cooker that is often my mind, I try to give myself some time to digest new lessons or new experiences. Sometimes, those situations are just personally painful.

The last Diabetic Ice Cream Social was no exception. While I truly believe in this event, and what we're trying to accomplish, and while I had many, many supporters, a few things grieved me from it:

• The lack of support from other prominent advocates: Honestly, on the regular, I could care less if these folks read my blog, if they like me, or if they think I'm a worthy advocate... but I found it personally disturbing when not many would participate, or share in this particular event -- which was really not about me. It was an event about setting a precedent that we diabetics can manage our own selves, with moderation and self control, and that we don't need to be treated like children (or alcoholics/foodaholics) who can't make food choices -- regardless of what those food choices are. "Ice cream is poison," some may claim, but then why are we supporting efforts to help teach young diabetics to learn how to drink in moderation, and appropriately balance diabetes, but not other types of food choices, instead of just telling them 'DON'T DRINK'? Isn't alcohol a poison, too, and with much more potentially dangerous consequences? ... And I am sure there are many more ice cream eaters than alcohol drinkers out there. (Because you believe in moderation, that's why!) I also don't mind exercising, and doing something to show how a simple modification in my life can control my glucose numbers... but it would be equally reasonable to me (and very realistic) to help teach others there's no shame in enjoying an occasional treat in moderation (perhaps even preventing binges, and eating disordered situations caused by deprivation). I came away feeling many advocates were really more concerned with folks not 'judging' them, and 'tarnishing' their own images, for promoting 'unhealthy habits' than of really wanting to make an impact. 
• The attack from diabetic food fundamentalists: People who, will not skip a beat to tell you there's no 'diabetic diet,' yet the minute you discuss having a scoop of ice cream, you're called irresponsible, or even childish in your health advocacy... and then take the opportunity to try to impose THEIR personal dietary choices on you, or others (while denying they are doing such a thing -- they are just 'responsibly' telling you that you're wrong). I don't think we can make many inroads into respect for the diabetic patient, and his or her personal choices, as long as these fundamentalist food attitudes are around. The event itself wasn't even about ice cream, it was about food independence -- the freedom to eat what YOU want to eat, as your choice -- in moderation, versus what others want you to eat... And it was just really disheartening to see these kinds of folks mud slinging the event, or myself, in blogs, etc., as someone intent on promoting an 'ice cream eating binge' that further creates more diabetes. Yes, the same people who speak of food and sugar not causing diabetes, accusing me of causing more diabetes. I'm sorry to say, but this statement isn't just valid for some types of diabetes, and not for others. NO diabetes is caused by any particular food choice. 
• The annoyance of Facebook's notification system: Facebook has just changed their system so much, that a simple event is now used to notify the heck out of others -- even if they haven't yet RSVP'ed for an event, and it thus made us look like 'spammers.' Not so Facebook savvy people kept attacking me, personally, for spamming them with 'the event' or for 'not taking them off the list,' or for revving up their cell phone notifications. We tried hard to educate folks on how to turn off their notifications, but there were just too many not-so-bright, self entitled, persons out there... whining about why we weren't doing these things for them. How these persons have managed to survive in Facebook's world is honestly beyond me. In future Diabetic Ice Cream events, we might hunt for a different method to keep track of 'likes' or 'rsvp's' so that such a massive amount of notification overload doesn't bring us down. We do suspect a large number of folks attended, but simply hit 'decline' to the invitation, just to avoid notification spam. 

So, in essence, it kind of hurts a little bit when the social media tools that are at your disposal are backfiring on you, and when persons who are supposed to support you -- especially because their own personal dietary choices might be different or varied -- are not doing so. It divides us, and weakens our message of food independence. I mean, the only way we can be vegan, or raw vegan, or low carb, or anything else, is because we decided to become independent of the mandate that we had to live by a classic ADA style diet. And thank goodness we no longer live under the notions that we HAVE to eat by what a dietitian exactly says we have to eat, or by what the olden days used to believe -- avoid table sugar, only. 

I am, in no way, an ADA diet advocate... but I will advocate for anyone who thinks that's a diet that gives them the self control, glucose wise, that they need. I will advocate for any regimen which they feel is balanced, isn't intrinsically dangerous or based on pseudoscience, and brings them euglycemia, ease of implementation, AND quality of life -- that's our goal! 

I felt I needed to say a few things on the matter... before I blogged on anything else. The goal of the Diabetic Ice Cream Social has, and will always be... FOOD INDEPENDENCE.

No D Day : True colours

Today has been declared 'No D Day' by the original Diabetes Ninja, George Simmons. It's a chance... actually it's a downright order *not* to blog about anything diabetes-related today. To write something else. To share something about who we are and what we like to do. There's more to each of us than just a broken pancreas, pitted fingertips and endless mealtime shenanigans right?

I've read some great posts today so thanks to everyone who has shown me more of who they really are.

Last year I mentioned that I like watching films. This year, well... I've started painting again. I used to paint years ago, but when the kids came along things got busy and it just sort of slipped by the wayside. Last year I was experimenting with a spray-stencil for a poster I was doing and had so much fun that I later experimented with using spray-stencil and watercolour together to make an image. I quite liked the feeling of not entirely being in control of the outcome (*struggles to resist drawing a d-related comparison*).

If you'd like to see what they look like you can find some examples under 'paintings' here:
www.stripedpebble.com

Set changes

Since I started with Artoo, infusion sets have been the weakest link in my pump experience. Around the time of the summer holiday I had noticed that I was getting some sort of set-based upheaval around once every 4-6 weeks, occasionally as much as fortnightly. This was clearly not right, and another 'no delivery' alert with attendant BGs in the 20s (360s) spurred me to contacting my pump DSN to investigate the options. Some of the failures I was getting were clearer than others, involving cannulas kinked at 90 degrees and 'no delivery' alarms. Others were less obvious - rampaging BGs which began to resolve after a set change despite there being no apparent problem with the old one. Still others involved multiple changes of reservoir and/or set in a single evening. Partly I am sure this is down to my own nervousness over the whole set business. One apparent failure, followed by a change which gives a 'no delivery' followed by another change can leave you feeling very unsure until you actually see your numbers begin to drop. Annoyingly, for me this can often take more than an hour - plenty of time to decide to do another full change 'just in case'.

In short I was very keen to experiment with alternative sets and see if I could find one which worked, change after change, for months rather than weeks at a stretch.

My DSN was able to give me several each of the shortest cannula length versions of Silhouette (angled Teflon), Sure-T (straight metal) and Mio (straight Teflon with self-serter).

Having spent most of September experimenting, on Friday I received my first order of Silhouettes which seem to work best for me.

I wasn't keen on the 'double sticky' extra loop business with Sure-Ts and while they were almost pain free to insert I found the 2 day changeover came around very quickly. I didn't get on well with the flimsy feeling Mio serter (though I know many love that feature). The first two Mios I pushed in manually, I actually dropped one which fell apart and deposited the 'sterile' needle part onto the floor (which would not have been ideal if I'd been changing on the run and had only taken one with me). The final nail in the coffin for Mios though was the last one which suffered a 'no delivery' cannula kink.

Silhouettes performed very reliably for the few I had to try, so I'll be interested to see what a whole box brings. I was impressed by the relatively compact box size. I'm undecided about the Silhouette kerplunker and may well try a few manual insertions which I suspect may be a bit more comfortable than spring-loaded ones. I did find that the mark on removal seems to be a little more noticeable than others, which might be to do with the angled nature of the cannula.

Fingers crossed I have a few months of clear space before I have to battle my next set-fail shuffle.

Glooko going spare

I was kindly offered the chance of trialling the Glooko meter sync cable and app early in August. Holiday madness rather overtook our household so it wasn't until last week that I was able to give it a go. the Glooko cable and app allow you to import data from one (or several) popular BG meters directly into your iPhone/iPod Touch. Once imported entries can have additional details (such as carbs, insulin dose, meal marker, comments) added. Subsequently nicely formatted data tables can be exported out as an email for printing or sharing with your healthcare team.

Unfortunately I can't really offer a 'proper' review or opinion because as it turns out the old blue Accu-Chek Aviva that I had intended to use for the trial is not compatible with the cable (though newer black ones would be).

What I saw of the app was straightforward enough. Unusually this logging app includes carb-lookup information which might allow you to have a better 'stab in the dark' guess at a meal than usual. This information (including nutritional breakdown) can be logged against your meal. From what I can see the app doesn't appear to offer graphing of your data, averages, SD or other analysis tools, opting instead for a simple table format with pre/post meal markers. Notes and comments are available either from a predefined list or can be typed in a box.

I would suggest that the Glooko cable would suit more occasional loggers, especially for users of Accu-Chek meters. The majority of meters it works with plug in via 3.5mm jack, but the optional Infra Red adapter (sold separately) requires you to line up the iPhone quite carefully, put the meter into IR transmit mode and then press 'sync' on the Glooko app. This is all very well if you want to import a day's or a week's worth of readings, but would take significantly longer than typing X.X into a box while hurrying so that your dinner doesn't get cold. Since the app is free, and the meter cable is what you buy, there is no way of adding BG values manually.

If you would like to try the iPhone BG meter sync cable for yourself the lovely folks at Glooko have suggested that I offer it to any of our readers who would like it (check Glooko.com for a list of compatible meters, and you would need an iPhone/iPod Touch, obviously). If you are interested, leave a comment below.

C8 MediSensors - A bright future for CGMs?

Some months ago I was made aware of a new piece of diabetes techno-gubbins in the pipeline which sounded really interesting. Any poor souls who have read these ramblings before will probably already know my interest in continuous glucose monitors (CGMs). So I was delighted to be invited by the lovely Andrew to a little round-table chinwag with various other diabetes bloggers, campaigners, movers and shakers along with a couple of people from C8 MediSensors who have developed an entirely new approach to CGM which has the potential to be a complete game-changer. A non-invasive, optical CGM. It is currently classed as an 'investigational device', so it's available for use in clinical trials, but not yet available for sale anywhere in the world.

In proper 'disclosure' style I'll mention at this point that my train fare was covered, they laid on some tasty sandwiches and I was offered a modest amount to cover attending the day. I wasn't asked or paid to write anything about it, but I wasn't forbidden from doing so either and as I say - this is already a proposition that interests me (and I suspect, some of you) very much.

What C8 MediSensors hoped to gain, I think, was some end-user input for the potential UK market. The device is not yet available anywhere (they hope to have European CE mark approval by the end of the year and plan to launch in the UK and Europe first). This wasn't a marketing push, or a sales pitch, not yet anyway - this was much more of a two-way dialogue. Picking our collective brains about what we thought would be important to UK punters, how well understood we thought the concept of CGM was in the UK. What potential attributes of app and interface we felt would be welcome and/or irrelevant.

What on earth are you talking about?
The device being developed is one of those rare things. A real first. It's a non-invasive continuous glucose monitor (nCGM). It measures glucose concentration not with an inserted sensor beneath the skin, but with a small beam of light. Let me say that again. No sensors. No sensor stabbiness every 3-7 days. No sensor cost. No consumables at all of any note. As someone who has looked into the challenging financial implications of self-funding a CGM in the UK you can see why this would attract my attention.

Essentially the nCGM is the world's smallest Raman spectrometer. Apparently the initial 'proof of concept' device was about the size of a sideboard, but you'll be pleased to hear that they have managed some ingenious Wayne Szalinski style miniaturisation since then and the current device and rechargeable battery are each roughly matchbox-sized and together weigh a little more than an iPhone. Not exactly nano-technology, but certainly viable. If you are interested in a bit more nitty gritty on the device itself we were shown a short video which shows the CGM in use.

There are still some wrinkles to consider of course. The 'belt' that holds the device against you is not the most beautiful fashion accessory you could imagine. You can't immerse the device in water. You can't really use it while running, leaping and turning somersaults (the light sensor needs gentle but consistent contact with the skin to take its readings every 6 minutes and might complain if it gets jiggled about a lot). There are even 'light screen'/dark shirt precautions that might need to be made if travelling alternately from bright sunshine to deep shadow since light can 'leak' horizontally under the skin. Currently the device is intended/tested for over 18s only, though young people and other user groups are certainly being considered for the future when research data/regulatory approval permits. Data display is currently only available via an Android smartphone, though an iPhone version is on the cards.

Crucially, with this CGM you just put it on and it begins collecting data within minutes. If you want a break, even for just a few hours, you can just take the whole thing off for a short while. It's still a CGM of course, so it's more 'trend' information than definitive BG levels and occasional fingersticks will still be part of the picture, but if you've looked into CGM before you'll know that already. Interestingly, the plan is to launch with a 30-day money back scheme allowing users to try it for themselves before they commit to permanent ownership.

I came away from the meeting very excited. After 8 years of development, and many clinical trials they have data that shows the C8 MediSensors Monitor to give results comparable in accuracy to 'traditional' CGMs, but without the ongoing sensor cost. In fact the suggested price point of the device ($4,000 or roughly £2,500 at the time of writing) is somewhat cheaper than one year's worth of full-time sensors, theoretically putting it within reach of many more people than can currently self-fund. In a clinic environment I would imagine this is a device that makes perfect sense. How many CGMs stay on clinic shelves, I wonder, for want of sensors to offer patients?

Encouragingly C8 MediSensors also seemed keen to build a relationship with users, foster something of a user community. Founded by a parent of a T1 child and his two college room-mates, they seem to have something of a patient's eye-view mentality. Essentially wanting to engage not just with Healthcare Professionals, but with the Diabetes Online Community. With us as end-users.

It will be very interesting to see what happens next. Whether CE approval is forthcoming, and quite how the launched device performs in the wild.

Hold on to you hats. This could completely change the landscape.

EDIT: C8 Medisensors announced that they had received CE Mark approval on 25th October 2012. Things seem to be getting a little more interesting!

UPDATE: Has the light gone out on C8 Medisensors optical CGM?

Nice new project

Just back from a short break in Cornwall. Lots of sea, sand and set changes (more on that later).

While away I had some slightly surprising and quite exciting news. A few weeks ago I caught sight of a thread on one of the forums I frequent that NICE (the National Institute for Clinical Excellence) were seeking patient/lay members to join the Guideline Development Groups for some of the diabetes guidelines, including Clinical Guideline CG15, Type 1 Diabetes in Adults.

Now I have good reason to like NICE very much. Because of the way the current guidelines are set out and worded I qualified for an insulin pump despite having a pretty decent A1c (because keeping it that way meant I lived my life constantly a little on edge about the possibility of a hypo). NICE guidelines lay down what is currently thought to be the best (and/or most cost-effective) approach in diabetes treatment. At the very least they give you an 'official' version of the sort of care you should expect that you can wave in front of any healthcare professional who still wants you to mash up bits of dead animals and drink your own wee to test for sweetness.

Back when I had my soapbox moment about the lack of carb counting education experienced by some people I reflected that the NICE guidelines were good, but perhaps a left just a little too much room for manoevre and were not up for review for some years. Here was my chance to put my money where my mouth was and get involved in the review process myself. It's a 2 year project with meetings approximately every 6-10 weeks. It involves quite a bit of reading and sifting of research papers in preparation for the meetings. There's a small payment to cover the cost of attending the meetings and travel expenses are paid.

So I filled in the application form, sent it off and waited. The week before last I took a conference call for the briefest of informal interviews and a few days ago I had an email to say that I had been appointed to the Guideline Development Group as one of two patient members. Yay!

Over the past few years I have hugely enjoyed getting to know lots of people with diabetes through this blog, various forums, Twitter, Facebook and all that. People whose experiences I hope to be able to feed into the review process along with my own.

I won't be able to share the details of any of the discussions before the guideline is published, but may ask you, dear reader, for your input/experiences in advance of some of the meetings to be able to bring wider view to the table.

Exciting times!