So whoa! Much woe.
Posts from the ‘Robot Life’ Category
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Brian Bosh, living with type 1 diabetes and also apparently a very clever guy, found a workaround for uploading Dexcom G4 data to a Mac computer. Yes, you read that correctly.
— brian bosh (@bosh) August 12, 2014
“I created Chromadex because I was trying #DIYPS but hated carrying around a second phone. I figured I was close enough to a computer enough of the time that I could run an uploader on there and it would work well enough. There already is an uploader for Windows and Android, but no way to do it on the Mac. (Or Linux for that matter.) Once the uploader was built, though, I thought it really ought to do some of the same things Dexcom Studio did, since that’s not available on Mac either: If I had the data, I might as well offer their reports too. At this point it will upload to #DIYPS, NightScout and run three reports. It still takes a little bit of wrenching to get it to upload and I’d like to make that easier. Had a few people ask if I could make it work with MMOL. I’d like to get more reports working.”
I haven’t downloaded my data yet via this application, but others have:
— Chris | Just Talking (@iam_spartacus) August 11, 2014
If you want to try it for yourself, visit the Chrome web store and download Chromadex for free. And if you like how it works, please thank Brian.
(Technically, the post title should be “what finger do you use for diabetes?” but it doesn’t have the same zing! to it.)
Earlier this week, I posted about the iHealth meter giveaway and asked people to answer the question, “Which finger is your go-to one for blood glucose checks?”
We only had ten options to choose from, so the answers unfortunately couldn’t get too weird. (Unless you’re old school and remember testing earlobes. I learned that at diabetes camp.) The finger-most-favored, by far, was the ring finger, with the middle finger as a distant second place. Pinkies had their own fan base, and thumbs were the only fingers that received a “Oh, heavens no! Never my thumb!” sort of response. (As a community, we are somewhat ambivalent about our index fingers. Except maybe to point and say, “Can you grab me those glucose tabs?” or “Yes, I can eat THAT.”)
When I examined my hands, it became clear that I was a ring finger/middle finger frequent tester, like many of you guys. The middle finger just seems appropriate, you know?
As Hilary so eloquently stated: “Right hand middle finger. It’s a big *@! to TD1″
The winners of the iHealth glucometer giveaway are Binay, Danielle, and Mark B! Congrats, you guys. I’ve sent you an email to coordinate mailing out your stuff.
Thank you for entering!
During my visit to Clara Barton Camp yesterday, I heard the same sentiment over and over again from the kids wearing the bionic pancreas: “It works.”
“It was weird not to touch the buttons when it beeped,” Addy said, an 11 year old camper at Clara Barton Camp who has been living with type 1 diabetes since she was two. “I’d reach down to look at it or touch it when it beeped but then I’d have to remember not to touch anything.”
“A big change from needing to check every beep and look at the devices all the time, right? So when did you feel like you were used to wearing it?” I asked her.
“Yesterday. Yesterday, it beeped and I didn’t reach down. I just said, ‘Whatever.’”
“You trusted it?”
“Yes. I trusted it. It works. If you check it, it’s perfect. My blood sugars are perfect.”
Addy has been wearing the bionic pancreas since Sunday, part of the Bionic Pancreas study taking place at The Barton Center (and also the Joslin Camp) this summer. She’s one of thirteen campers at Barton taking part in the study, ages ranging from six to 11 years old, six girls suited up with the bionic pancreas last week and seven this week. “My blood sugars have been perfect – I haven’t been low at all and I haven’t been high, except for one 203 mg/dL.”
If a week without blood sugar excursions sounds like an impossible dream, take heart. Take pancreas, too, because this technology actually exists and is currently attached to seven girls in Massachusetts. And not “seven girls stuck in a hospital bed under strict activity guidelines,” but seven girls who are running amuck at camp, swimming, dancing, singing in the dining hall, and burping at picnic tables outside of the cabins. The bionic pancreas has been highlighted in the New York Times, NPR, chronicled extensively over at diaTribe, and has also been the subject of a frequently-downloaded-and-rabidly-shared New England Journal of Medicine article.
The system has a few moving parts: two t:slim insulin pumps with the Bluetooth switched on for communicating with the phone (one filled with insulin and one filled with glucagon), a Dexcom CGM, and an iPhone. An in-depth look at how the technology works together can be found in the NEJM paper, but the basic gist is that the Dexcom monitors blood sugars and sends that data to the iPhone, which is running an algorithm that doses insulin, glucagon, or refrains from dosing anything at all. Lows can be corrected by glucagon, highs by insulin. Meals aren’t carb counted, but instead the algorithm “learns” what a big meal, small meal, or snack is based on minimal input from the PWD.
“It’s beautiful,” I said to Ed Damiano, one of the principal investigators on the project, after seeing some of the blood sugar outcomes from previous studies.
“It’s still a little clunky,” he replied. “I want to see one device, one infusion set. But this? It works.”
Currently, the camp study at Barton has girls on the full bionic pancreas system for five days, and then five days on their own insulin pump, but with the CGM blinded to the user and still uploading to the cloud. Bionic pancreas campers are required to check their blood sugar at least seven times per day. Due to camp safety protocols, the study team can’t let low blood sugars “ride” and assume that the bionic pancreas will step in with glucagon in time, so success on some levels isn’t judged by minimal time below 70 mg/dL but instead the reliable metric becomes how many times did the study team need to intervene for a low blood sugar.
This summer, there are a few new features on the bionic pancreas. One is “microburst glucagon,” which is most useful for when people are disconnecting the system for swimming or similar, in efforts to provide a safety net for low blood sugars while doing that kind of activity. There is also an option for temporary targets, which allows people to adjust their target thresholds. “Normally, we aim for 100 mg/dL, but if we can adjust the threshold and show a change in the A1C based on that adjustment, we’re able to titrate A1C levels using the bionic pancreas,” said Ed.
Some challenges still exist with the system. The bulky devices, for one, are their own challenge, but as the project moves forward, the diabetes community rallies to support current needs. “Donna from Tallygear came up and made these ‘GO BIONIC!” belts in a matter of 48 hours.” Ed said, smiling. “We didn’t ask her to do that. She offered, and we are so grateful because the kids love them.”
The kids sing the praises of this device. Ally, diagnosed in 2009 at the age of five, wore the bionic pancreas the week before Addy suited up. “It really works. When I saw the video online, I thought it was made up. I thought the girl in the video was lucky, and that her numbers were just perfect that day. And then I wore it [the bionic pancreas] and I was like, ‘Wait … it really does work!’”
Addy chimed in, her bionic pancreas belt visible over her shirt: “Ally wore this last week and now I’m wearing it. She said to me, ‘If you don’t want to wear it, can I wear it for you?’”
Ally nodded. “I did say that.”
“Does the weight of the device bug you?” I asked Ally.
“No. It’s a little heavier but I don’t care. Even with all the pumps on and the phone, I could still do a back-handspring in the grass.”
The study at Barton concludes this week and then moves over to the nearby boys’ camp. But after this study finishes, there is still work to be done. The amazing bionic pancreas team has come so far and the 2016 pivotal study is in sight, but needs community support to get there.
This is where the Bionic Challenge comes in.
According to the website call-to-action: “The Bionic Challenge asks each family to raise $5,000 in 60 days (by September 1, 2014). If each family in attendance here today can turn to their friends and relatives and obtain 50 $100 donations (that means finding only about one donation per day for the next seven weeks), we can resume our development effort in September and keep on schedule for our final pivotal study in 2016. If we cannot resume in September, it could jeopardize our ability to secure a recently announced time-limited $20MM NIH funding opportunity, which is due in about nine months (April 15, 2015) and could support all of the clinical costs of our pivotal study.”
tl;dr: the project needs the support of the diabetes community because, without it, the goal of a 2016 pivotal study may be delayed. If you can donate, please do. If you can’t, please consider sharing this information with someone who can. The more people who know how to help, the better.
After being promised a “cure in five years” back in 1986, the idea of the bionic pancreas being delayed because of money makes me feel insane. I could understand a delay if the technology wasn’t up to snuff, but to delay due to funding is unreasonable. I saw kids playing outside yesterday afternoon, running around and laughing and having fun and the burden of diabetes seemed only as heavy as the belt around their waist, which with time and technology becomes smaller and lighter.
“I look at diabetes as management and maintenance,” said Ed, as we sat in the Barton Center bionic pancreas command center, where the study team was hard at work monitoring the campers blood sugars from the cloud. “The maintenance part is the changing of an infusion set, the changing of a sensor, the checking of blood sugars. The management part, to me, is the emotional part of diabetes. The fact that you are so often told that you’re ‘wrong’ because you’re trying to thread the needle. This device doesn’t take away from the maintenance part because it still requires that you wear something, do something, change something. But it does make the management part smaller. So much smaller.”
I don’t know if a biological cure will be seen in my lifetime. I was diagnosed with type 1 diabetes in 1986 and have been living well, but not without frustration, as a host to this disease for almost 28 years. My perception of what a “cure” is has changed as I’ve grown older, and my hope for something that takes this disease away fades with time. But seeing the bionic pancreas at work, around the waists of children not much older than my own, and watching the worries of diabetes lifted from their minds and the minds of their families, I feel renewed hope. More hope than I’ve felt in a long, long time because this is real. I held it in my hand. It filled me back up.
Because it works.
You can follow the progress of the bionic pancreas on the Bionic Pancreas website and “like” their Facebook page for more updates. Links to articles featuring the bionic pancreas are here , and this video shows you how, and why, the bionic pancreas works:
Have you heard? Sierra Sandison just earned the crown as Miss Idaho, and she accomplished her goal with an insulin pump clipped to her hip. Yes, that’s right – another Miss America contender has hit the stage with diabetes front-and-center. And since winning Miss Idaho barely a week ago, Sierra has already brought type 1 diabetes to the national stage via stories on NPR, People Magazine, Buzzfeed and a host of other media outlets.
Diagnosed with type 1 diabetes just after she turned 18, Sierra is helping empower people with diabetes to wear their devices proudly with the #showmeyourpump hashtag as her rallying cry. Today, Sierra is sharing some some of her diabetes story here on SUM.
Kerri: Sierra, you were just crowned Miss Idaho and are off to compete for the Miss America crown this September. Congratulations! And you’re also living with type 1 diabetes! Can you share a little bit about your diagnosis story?
Sierra: My dad is a family practice physician, but I was diagnosed shortly after my 18th birthday and had recently moved out of my parents’ house, so we didn’t catch it as quickly as we could have if my dad had been able to see the symptoms. Fortunately, I was never hospitalized!
I was extremely thirsty and hungry! It finally got to a point where it was ridiculously inconvenient. One day, I was snowboarding, and had to buy water bottles every time I got done with a run. I would drink them on the way up the chairlift, and then have to “relieve” myself at the top, and then again when I got to the bottom. Then, the cycle would repeat. On the chairlift, I called my dad and said, “Dad, I have a problem. I am an aquaholic. Can I go to rehab for a water addiction?” He immediately knew what the real problem was, since my late uncle and grandpa had diabetes, and my second cousin does as well.
However, when it was confirmed, and 550 [mg/dL] popped up on the glucometer, I bawled and bawled and bawled. A diabetes educator came and spoke to my class the next day, because I was terrified that they would make comments along the lines of “it’s your fault”, “maybe if you ate healthier…”, etc.
Kerri: I saw on your Facebook profile that you were proudly rocking your t:slim insulin pump onstage at Miss Idaho – were you nervous about showing the judges your diabetes device? What made you decide to go for it and share openly?
Sierra: I’m going to be completely honest, it still scares me sometimes to wear my insulin pump. Getting the confidence to wear it on stage has been a journey.
When I was first diagnosed, I hated diabetes so much. I just tried to ignore it, and let my blood sugar be high until I felt to sick to deal with it. It was awful. In July, my friend asked me to compete in our local pageant, Miss Magic Valley. I met the director for lunch, who told me everything that was involved. When our food arrived, I pulled out my insulin pen, and she immediately told me about Nicole Johnson, Miss America 1999.
Nicole wore her insulin pump on the Miss America stage while she competed for her title. Knowing that has had such a huge impact on my confidence. As a young woman, we often long to look like the girls in the media: movie stars, super models, cover girls, etc. The media gives us unrealistic expectations, and most of us will never measure up. We soon begin to think that, because we are different from those girls we see, that we are somehow worth less, or less beautiful than them.
What a disgusting lie! Unfortunately, I don’t think we can ever completely escape the influence the media has on us. I hope that someday the media can be filled with a variety of beauty! That is one of the reasons I love the Miss America Organization: Nicole Johnson rocking her insulin pump in 1999; Alexis Wineman, the first woman with autism to compete at Miss America, in 2012; Heather Whitestone, the first deaf Miss America in 1995; Nicole Kelley, Miss Iowa 2013, was born with one arm. And countless more women who have inspired the country while competing at Miss America!
So, eventually, after thinking about, researching, and following Nicole Johnson, I got the guts to get a pump. However, it took me another year to compete with it.
This year at Miss Idaho, I was honestly terrified. I was nervous the judges wouldn’t ask me about it in my interview. I was nervous that the audience would be confused. I was scared the other contestants would think I was using it to try and get pity from the judges.
I walked into my interview, and the very first question was about diabetes. It was a huge relief. “I can do this,” I thought, until I walked out of the dressing room, and was immediately asked about the pump. The person who asked me was Miss Idaho’s Outstanding Preteen, McCall Salinas. While my heart sunk when she first pointed it out, that quickly changed when she explained she was a diabetic, but was too scared to get a pump because of what people would think.
That was it. I was doing it. I was going to wear the pump for McCall, no matter what people said or thought, and no matter how badly it may affect my score. I walked on stage, and the rest is history.
Kerri: Since the competition, you’ve also encouraged others to wear their devices proudly, with the #showmeyourpump hashtag/mantra. What’s the response been like?
Sierra: It has been so overwhelmingly AMAZING! You have to understand, I am a completely normal person. My sisters and I are getting embarrassingly excited about all my new followers and likes. It is so crazy how many people were so inspired by me doing such a simple thing! I was prepared for a lot of negative backlash for competing in a beauty pageant with a swimsuit competition involved, but as far as I know, most everyone has been positive!
The response to my #showmeyourpump campaign has been crazy as well! I can’t keep up—it is unreal! We have had responses from diabetics all over the country, and from all over the world. I have also heard from kids with hearing aids, feeding tubes, etc. How awesome that it is having an impact even beyond the DOC! Keep the pictures coming(:
Kerri: Is diabetes advocacy part of your competition platform? Can you tell me about how you plan to use your voice to improve diabetes awareness?
Sierra: It was my original platform, but before I was Miss Idaho, I didn’t have much of a voice. My platform now is actually a program my sister and I started for kids with developmental disabilities. We put on sports camps for them! The program is called Possibilities for Disabilities. Originally, we just wanted to give them the chance to participate in the fun extracurricular activities their peers do, because we think that sports and music are important to adolescents in finding their identity, discovering their passions, and building confidence. What we soon realized is that the program was doing so much more! We have students at the high school volunteer as “student coaches” and work with the campers. By placing the kids with disabilities in a fun, empowering, positive environment with their peers, it breaks down barriers and helps the kids form friendships with their peers. This has transformed their lives more than anything else! The entire culture of the high school we work with has changed towards the kids in special ed. They have formed identities beyond their disabilities, and are accepted more than they ever would be at another school. I am so excited to have the opportunity to spread Possibilities across the state, and even across the nation, as Miss Idaho!
With my diabetes, the message I try to get across to everyone I come in contact with is this: whatever obstacle they are facing in their life, they can not only overcome it, but use it to become a stronger person, as well as impact the lives of others. There is one girl in my camp who is a high functioning autistic, and has decided to put on a Possibilities camp for her senior project next year. I am so excited. She is doing exactly what I hope I can inspire others to do: take their challenges and use them to serve others.
I love Possibilities for Disabilities, but now that I have a more powerful voice as a diabetic, I am ECSTATIC to use it! Who said I couldn’t have two platforms?
Kerri: There’s a lot of discussion in the diabetes online community about diabetes stigma. Have you ever been discriminated against in terms of diabetes? How did you handle it?
Sierra: Before my family and close friends were educated, there were some hurtful comments about how my diabetes was my fault, because of the confusion between type 1 and type 2. Aside from that, I cannot recall any other negative experiences, aside from confused and slightly cold questions about my insulin pump. I have been very fortunate!
Kerri: How can the diabetes community help support you as you make your moves for Miss America?
Sierra: In a couple weeks, all the Miss America contestants will be publishing their “People’s Choice” videos. America can vote one contestant into the top 15! Only the top 15 get to compete in the televised portion of the pageant. It would mean the world to me if the diabetic community would help me win People’s Choice to guarantee that I have the opportunity to compete with my pump on national television!
Kerri: Sounds like a plan, Sierra. Is there anything else you’d like to share?
Sierra: I am so happy I can have a voice to inspire others who are similar to me, and hope to serve the diabetes community to best of my ability this year! The best way to reach as many diabetics as possible is through the DOC and social media! You can follow my year as Miss Idaho in the following ways:
I have also had a lot of people ask me about sending letters and gifts! I adore snail mail, so everyone is welcome to send mail to: Sierra Sandison, P.O. Box 6159, Twin Falls, ID 83303. I love you all so, so much! Thank you again for all your support!
Thanks, Sierra! You can follow more from Sierra on her personal blog, Miss Idaho, and via the #showmeyourpump hashtag. We’ll be following your journey to Miss America this fall, and supporting you along the way!