When Mike Maniscalco goes to sleep at night, he doesn’t have to worry if his 3-year-old son’s blood sugar goes low.
If that happens, the lights in his bedroom turn on no matter what time it is. That automated lighting is a point of pride for the family, and provides a safety net for them to know that little Zach is protected by the "smart diabetes home" technology his dad has created and continues building out.
It's a sign of the times, as more in the Diabetes Community embrace the do-it-yourself spirit to tinker with tech and tools in ways that best fit their lives. The once-fringe group of #WeAreNotWaiting diabetes DIYers may be coming closer mainstream as people like this Austin, TX-based D-dad help create opportunities for easy automation.
"This is really an interesting space, and the remote monitoring and connectivity of these devices are far ahead of other types of chronic conditions and things in healthcare," he tells us. “The future is taking advantage of all the interfaces we now have with wearables, voice recognition and interactions… that’s where we are going. It can really be used to start relieving some of the stress and anxiety that comes with managing the disease."
A Toddler Triplet's Diabetes Diagnosis
And here's an interesting tidbit: little Zach is one of three Maniscalco triplets, along with a pair of twins born just over a year ago -- fortunately, he's the only one with T1D (!). His diagnosis came in August 2016 when the triplets were just 18 months old. Thankfully, the family caught the symptoms before he went into DKA or experienced any dramatic incidents, and got him to a hospital where he could be treated and the family taught to start managing it.
At the hospital, the medical team presented the treatment plans all based on carb-counting and injection timing and blood sugar checking. And then within the last day or so, they were told about technology tools such as pumps, CGMs and blood sugar data tracking devices.
Mike Maniscalco’s ears perked up, given his professional career experience in the technology home automation universe.
He’s an Internet of Things (IoT) guy, who works in the smart-home networking and remote automation field and co-founded the Austin-based startup Ihiji. He holds a computer science degree and has worked in network engineering and software development; his resume includes a stint in the late 90s and early 2000s at Bell South in the R&D division, focused on future technologies that might not become reality for another decade.
The startup he helped found in 2009 specializes in engineering, designing, installing, and supporting home automation and networking tools for high-end, large-scale systems. Once the homes are connected to the network and everything can be monitored remotely, “the homeowners wildest dreams could come true,” Maniscalco says.
So when his son’s diabetes diagnosis came into the picture, Maniscalco immediately had big ideas.
“Being a technologist, everything clicked,” he sayes. “I wondered why automation wasn't talked about earlier, and I felt that technology was the answer for all of this (struggle managing diabetes).”
His son was provided an Animas Ping insulin pump and a Dexcom CGM pretty quickly, but these tools were not everything the family was hoping for.
“The onboarding experience, for me as a technology guy, was super-frustrating,” Maniscalco says. “Coming from a network monitoring background, I thought the user experiences, the interfaces, the devices themselves… nothing seemed like it was where it should be. It felt like it was a decade-plus behind. That was a disappointment, but we quickly adapted and lived with what was there and the status quo.”
Finding CGM in the Cloud
Still, when Maniscalco first heard about the CGM in the Cloud community not long after his son's diagnosis, the family was not quite ready to go down that road yet.
They were still adjusting to the initial diabetes routine at home, so it didn’t immediately rise to the top of the family’s priority list to begin researching and connecting to the DIY universe. But Maniscalco did begin talking with others in the Diabetes Community about how they were managing and using various D-tech tools.
Before long, a couple of real-life examples paved the way for Maniscalco to turn to the CGM in the Cloud community for help. First, he happened upon a doctor who was mother to a 2-year-old twin diagnosed a month before Zach, and she told them about her Pebble smartwatch connecting with the Nightscout for data sharing.
Then, during a couple of important meetings at work, Maniscalco silenced his phone alerts and forgot to turn them back on afterward. The alerts stayed silenced overnight, so when Zach had a low blood sugar there was no audible alert from the Dexcom for his parents to hear. Luckily, the hypo wasn’t too severe and all turned out OK, but it sure got the D-Dad thinking.
“That was the first time this had happened, and I thought, ‘This is insane, there has to be a better way.' That was the catalyst for trying to do something different. Why can’t it turn on my lights in the bedroom? From a technical perspective, there was no reason this couldn’t happen.”
He Googled it, found Nightscout and soon joined the #WeAreNotWaiting community. Then, he took it to the next level by tapping into his professional expertise in home automation.
This isn't foreign to his wife Melissa, either, as she has a product and marketing background in medical devices. So while not a software expert, Mike says she's "technical enough to understand how it all comes together and the benefits."
A Diabetes Smart Home
“This is now what wakes us up, not every night but a lot of them. It does its job and does its job really well,” Maniscalco says.
At first, he connected his home light dimmers via Nightscout using a WiFi connection. He'd already hooked up his Ring Video Doorbell to turn on some lights, triggering for events that weren't related to diabetes. Using that logic, he then did the same to make his home lights turn on if Nightscout triggered a critically low BG. It also alerts three phones they have in the house.
"I love it when the lights go on at 4 a.m. to alert for a low reading," he says. "I seriously smile because I know the risk of missing one if I wasn't awake."
He also has an app on his Mac laptop to keep track of trends while Zach's at school. Right now, the lights just turn on in the master bedroom -- he hasn't set up flashing because this has worked so well, but also because it doesn't wake up the babie in the house!
Overall, Maniscalco tells us it didn't take very much time to get this system up and running. The technical specs are as follows:
- Smart Z-Wave lighting dimmers connect to a SmartThings hub (an $80 Samsung box that allows you to connect all your smart home features like lights and thermostats, and remotely control them).
- That hub is wired to the Internet.
- From there, IFTTT (If Not This, Then That) communicates with Nightscout and the SmartThings servers. Low events trigger a message to the SmartThings hub to power on the light.
He plans to make some simple changes soon to trigger alerts and responsive lighting in other rooms beyond just the bedroom.
Anyone wanting to explore setting up a system like this for themselves would be best-served by investigating the Nightscout documentation already published, and connecting to the CGM in the Cloud community online or developer-specific sites, he says.
Making Connected D-Tech Mainstream
As to what's next... Maniscalco has a vision.
First, he'd love to see Amazon Echo create an API allowing for voice recognition of any diabetes device, but that hasn't yet happened. He also would love to connect his Google Home, so that possibly it could automatically say how many carbs a banana or even 15g of refried beans might have (since Google's search database allows for this info to display). He also sees the potential of connecting to smart TVs, and allowing for displays and alerts to chime if a hypo's happening or predicted.
The Maniscalco family hasn't yet integrated any of this data-sharing technology into their vehicles, as other DIYers have done, though they have their eye on that, too, along with finding the time (with 3-year-old triplets and a younger set of twins to boot!) to build their own closed loop system – a work in progress.
The D-Dad is conscious of the data overload phenom and alert fatigue, and plans to keep that in mind. But so far they've just been grateful for the safety and peace of mind provided. As Zach gets older, they may tweak how the smarthome monitoring functions or how it notifies them -- easy, as it's all wonderfully customizable.
Most of all, Maniscalco wants to see this kind of DIY tech more widely adopted, beyond just the small percentage of tech-savvy D-Community members it currently reaches.
He also realizes that while some may view the current D-tech and tools as behind-the-times, many may have a different view.
"One of the things I worry about is that from an 'outsider's' perspective being so new to this, technology doesn't seem very far along. But it's different for those who've been living with this for 30 years or even 5-10 years, and you realize how far technology in diabetes has come... I truly do appreciate all the innovation that's happened, and the direction we're going. That perspective is important."