DIY

#DIYPS and the wedding

by Dana Lewis

“Diabetes wasn’t in the picture during the wedding, and that was exactly how it should be.”

Dana Lewis and Scott Leibrand said "I do!"

 

If you’re not familiar with Scott & me (Dana), and how we ended up building #DIYPS and later #OpenAPS, you might be interested to read this great article in Business Insider. (And I’ve been told it’s guaranteed to make you go “awww” even if you already sort-of know us!)

I love that it also highlights how #DIYPS played into our wedding, which was exactly how I wanted it: I hardly thought about diabetes at all. I didn’t have to cut into the lining of my wedding dress to carry d-supplies. In fact, up until the last minute, I wasn’t sure if I was going to carry the closed loop during the wedding itself, because I had decided not to put pockets in my dress and I wasn’t sure Scott’s suit had big enough pockets to hold everything.

But just like all things in this #DIYPS and #OpenAPS journey, a couple of serendipitous events gave us our solution.

First, we were in Alabama for the week before the wedding, and I was working a few days remotely there. But I like to move while I work, and so I’d move around the house (and go outside) with my laptop while I was on calls. This led to Scott getting no data alerts and no-loop-running alerts, and randomly chasing me down to re-plunk the loop down into range. Finally, he asked if I would consider a fanny pack. I laughed, and told him no way, and that HE should wear a fanny pack. Then I remembered hearing about flip belts and thinking about getting one at one point to try for running. So, we made a quick Amazon purchase (where all great artificial pancreas parts come from ;)).

Scott probably thought he’d get me to wear the flip belt around the house (it is purple, after all), and maybe at the wedding, but when it arrived two days before the wedding and I was busy working, he actually put it on, placed all the loop parts inside, and then decided to try putting his tux coat on over it.

It didn’t show.

And this is how *Scott* ended up wearing the belt and the AP parts during the wedding (he’s wearing it above and you can’t see it!). I obviously was stilling wearing my pump and my CGM sensor under my dress where it wasn’t showing. We also gave my second CGM receiver to Tim ( Scott’s brother and best-man-extraordinaire), who also wore Scott’s watch for much of the day and helped give me updates on my BGs when Scott & the loop were out of range prior to our “first look”.

As a result of having #DIYPS/#OpenAPS, my BGs had been picture perfect the night before the wedding, and were within range all afternoon leading up to the wedding. (They were fine during and after the wedding, too, so much so that it never occurred to me to take more pictures of my graph, which shows how perfect it was to have diabetes not on my mind!)

This may have been (one of) the first wedding(s) with an artificial pancreas in it, but we bet it won’t be the last – one of our friends in the Seattle area who is now up and running on #OpenAPS is also getting married next month, and he may wear his loop during his wedding, too!

We like this trend.

What we’ve been up to – mostly offline #OpenAPS

by Dana Lewis

It’s probably time for an update around here – especially since we’re nearing the “deadline” we set for closing the loop – August 1, 2015!

August 1 is our wedding date, which is part of the reason it’s been quiet around here as we are off busy preparing for that.

The other reason it’s been quiet (unless you follow me on Twitter and see some of the #DIYPS examples there) is because we closed the loop back in December (read more about it here), and we haven’t made any significant updates to the #DIYPS system.

It’s all working well.

Showing a relatively flat CGM graph despite a 75 gram carbohydrate meal, thanks to OpenAPS.

What we’ve been focusing on most of the year is supporting the #OpenAPS community. In particular, we’re trying to help more people learn what they need to understand so that they can build their own loops. There’s a handful who have made or are making excellent progress, and hopefully we’ll have some OpenAPS data to share soon.

Most recently, spotty hotel internet in Portugal helped prompt us to finish the offline version of #OpenAPS, which I’ve been testing. (And will use the honeymoon, wherever that ends up being, as an opportunity for more testing!) #DIYPS has always required internet connectivity to get the recommendations from the cloud (which is where it stores the data I give it about boluses and carbs). The reliance on connectivity is always something to troubleshoot if the system appears to not be working, and also makes it burdensome to carry around all the time and make sure it has connectivity.

Getting offline looping of CGM data to OpenAPS.

Offline OpenAPS will likely solve a big part of the frustrations I experience with daytime use of the system. I already saw a big improvement in being able to use offline OpenAPS in Portugal – both at the conference and in the hotel, as well as walking the streets of London during a layover. It’s nice to drop the system (the same Raspberry Pi, battery, and carelink stick from DIYPS) in my bag and not have to constantly check to make sure the wifi hotspot is connected. The only difference in the setup is that one of my CGMs is plugged directly into the Raspberry Pi.

Showing my OpenAPS rig against the plane window to illustrate offline steam of BGs to OpenAPS is working

We still need to do more testing on our offline implementation of OpenAPS, but it’s going well and I’m excited that what we’ve learned from this progress will help us with better tools to enable the broader OpenAPS community since #WeAreNotWaiting!

“Making” and “DIY”ing – continued

by Dana Lewis

I had a conversation this week with someone in the CGM in the Cloud Facebook group, after they indicated they wouldn’t be (or maybe weren’t interested in) joining the “dev” group for #OpenAPS – and it’s a conversation I find myself having often. Here’s what I usually end up saying, when someone says they’re not a “dev” or “not an engineer” or something similar:

“I’m not a formally trained developer/coder/engineer, either… but I keep telling people, many people in this project aren’t- it’s a passion project where we learn what we need to learn to do the things we want to do. It’s fine if someone chooses not to do something, but I encourage everyone to not let labels or perceptions of traditional roles stop them from jumping in and giving it a try to see what they can learn and thus do! Especially with this awesome supportive community of people willing to help you as you go.”

This also came up when we were discussing what it takes to be a “maker” on TEDMED’s #GreatChallenges live panel today. One of my excellent fellow panelists (Cole) pointed out that pretty much everyone is a maker – whether you tweak a recipe, work with wood, or find any kind of workaround of any sort to make things work. (Which in my mind makes every single person with diabetes a “maker” and probably anyone with any disease or health care condition that they live with.)

I previously wrote about what it takes to DIY from a DIYPS and #OpenAPS perspective (and why that’s important), but I think it holds true across any aspect of diabetes or any other disease state – and definitely beyond healthcare:

Passion, persistence, and willpower needed.

So please, don’t let labels stop you from DOING. You can learn whatever tech skills you set your mind to. You can find numerous ways to solve a problem, whether it’s on your own or by partnering with someone else – and there’s plenty of people with the skills who are willing to help you learn, too.Remember, we started building #DIYPS to make louder CGM alarms. Scott and I have both learned numerous new things and new programming languages and skills along the way as we went from alarms to an alert and recommendation system to a closed loop artificial pancreas (and now people who own 4 Raspberry Pis). We didn’t come to the table with knowledge of everything we needed to know to do what we first wanted to do – and we’re definitely still learning a dozen or more things (programming languages, new software, etc.) along the way as we continue with #OpenAPS. We also didn’t know anything previously about working directly with the FDA – and now we are, on a number of projects, in order to help scale from n=1 of a DIY artificial pancreas to many n=1s around the world.

You can do this. Bring your passion, and go do great things!

#WeAreNotWaiting, are you?