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Posts tagged ‘Twitter’

Urgency – #Vote4DM and #DOCasksFDA.

Today is the last day to participate in the #DOCasksFDA survey.  The link is HERE and you can just CLICK ON THIS LINK and I’ll stop using the caps lock key.

Also, if you’d like to contribute your voice and share your dream for the future of diabetes, do it.  Do it via video, if you’re so inclined, like so many others have done.

Also, the Strip Safely team is bringing about a new advocacy initiative, using Twitter to target our legislators.  As the campaign tagline says, “We voted them into office.  Tell them to #Vote4DM.”  There are three diabetes bills that are currently in play up on Capitol Hill, and by visiting the Twitter page for Strip Safely, you’ll see some customized messaging all ready to go for your specific representatives.  For more information on the bills on tap and how you can raise your voice, CLICK HERE (damn it – that all caps button is my best friend these days).

Thank you, as always, for being such a crucial part of the diabetes community.  This whole thing would fall flat without you.  (SERIOUSLY.)

What Does the DOC Mean to You?

Two weeks ago, the #dsma chat was centered on the how and why of people’s participation in the Diabetes Online Community (DOC), and after chat participants shared what brought them to the web for diabetes information, the last question of the night asked them what the DOC means to them.

The answers created a quilt of community and comfort that can’t be denied:

And for me?

Tune in to tonight’s #dsma chat at 9 pm EST. For information on how to get started with Twitter, jump back to this Diabetes and Twitter 101 post.

Drafting Off #DSMA: Diabetes Job Description.

I love tuning in to the diabetes discussions on Twitter – they are always insightful and make me see things through a different (insulin-colored?) lens. The final question of last night’s #dsma chat really brought out some interesting responses:

I wasn’t exactly sure what “position description for life with diabetes” meant, specifically, so I took it as a “job description” of sorts … and one that would vary for everyone:

Looking back, I’m grateful that my learning curve belonged mostly to my parents (which is good because I’m sure it was steep at the outset). Once I was ready to take over the responsibility of diabetes self-care, the disease was embedded solidly into the context of my life and the learning curve became more of a gentle, but constant, slope.

Reading the diverse responses from my fellow PWD on #dsma was an eye-opening experience. That’s what brings me back to #dsma every time, because there’s no set-and-standard answer to any diabetes-related query … we’re all unique and special pancreatically-challenged snowflakes. :)

Jamie summed it up neatly:

To join the diabetes conversation, watch the #dsma hashtag on Twitter on Wednesday nights at 9 pm EST. It’s a great way to wind down your night while building up our community.

Advocacy: Do It with Flair.

From @sixuntilme, after watching some of DarthSkeptic’s Tweets correcting diabetes misinformation fly by in my feed (thanks to @txtingmypancreas for highlighting):  “Why did you decide to take this wickedly funny high road?”

From @darthskeptic:  “It was partially based on frustration and partially based on ‘TheoryFail’ and ‘TakeThatDarwin‘ addressing and mocking people ignorant about basic science.”

Whatever the reason, I love seeing people who are tagging their desserts as #diabetes on Twitter being served up some education by @darthskeptic. Some examples:

And my favorite:

Carry on, @darthskeptic. Carry on.

Tallygear Giveaway! Exclamation Point!

Tallygear is awesome, and I’ve been a big fan for many years.  After switching over to the Dexcom G4 continuous glucose monitor, I was so happy to see that Donna at Tallygear had created a case to protect the G4 (and have been using it daily since).  And now she’s up and running with a lot of new cases for the Dexcom G4 unit, as well as some other colorful ways to dress up the otherwise drab world of diabetes devices.

Check out some of her new designs!

Donna was kind enough to send some samples to me, and I’d like to turn that favor around to you guys.  But there’s a catch.  I have three Tallygear “gift packs” (in quotation marks because there are things from Tallygear that I’m including, but I’m sending the packages myself, so there will be some additional surprises to be determined by how much cat hair I can collect from Loopy and Siah … just kidding … sort of …) to give away, but I want to couple this up with the recent, and important, discussions about diabetes stigma.

To win one the Tallygear giveaways, you’ll need to leave a comment here on this blog post or Tweet about this giveaway (see the Rafflecopter widget below), but not in the “promote me!” sort of way.  Instead, I want you to answer this question:

“How will you help change the perception of diabetes today?  #dstigma“ 

As a community, we can help change the face of diabetes, one moment at a time.  Dealing with diabetes-related stigma isn’t something that can be “fixed” overnight, but every time we make diabetes visible in an accurate, educated way, we’re taking a bite out of stigma.  Kind of like McGruff the Crime Dog.  So let’s keep talking.

You can follow Donna from Tallygear on Twitter @Tallygear and on Facebook.  The official Tallygear website, with a complete product listing and a catalog of colors to choose from, is at Tallygear.com.  If you’re one of the winners, I’ll contact you for your mailing address (so be sure to leave a valid email).

And thanks for playing along.  I’m excited to see the discussions that have cropped up about diabetes stigma, and I hope to contribute to them.

a Rafflecopter giveaway

We Are Not Waiting: CGM in the Cloud (Part 1).

Waiting, when it comes to diabetes, frustrates the hell out of me.  According to the “cure in five years!” mantra that rang out constantly when I was diagnosed in 1986, I’ve been waiting for a cure for almost 30 years.  Currently, I wait (impatiently) for the Animas Vibe to become available to US patients.  I wait for the Dexcom Share application to become available.  I wait for doctors to call me in for appointments and on the phone with mail order pharmacies and on and on … lots of waiting.

I hate waiting.

But people aren’t waiting anymore.  There’s a whole movement in the diabetes community embracing that very concept.  And today (and tomorrow) I’ll be taking an in-depth look at how amazing people in this community are taking their diabetes data into their own hands.  We are not waiting, indeed!

Today, John Costik, one of the founding members of the CGM in the Cloud Facebook group, an engineer, and diabetes dad to Evan, talks with me about the #wearenotwaiting movement and how he was inspired to make CGM data bend to his needs.  (This is a long post, but his perspectives are awesome.)

Kerri:  What is your connection to diabetes?  And can you tell me about the CGM in the Cloud group, with some background on the We Are Not Waiting movement?

John Costik:  When Evan was diagnosed, it felt like the floor to the lives we knew had vanished. The grief, anxiety and denial were all very real, and once we had our hospital training and sent on our way, the reality of it all sank in. Type one management is hard! But my wife, Laura and I are both engineers; we saw, almost immediately, that processes can be improved, data can be collected and analyzed. If we could make life (even just a little) more like life without T1D, we had to try. After researching pumps and CGMs around Christmas of that year, we decided we wanted to start on the [Dexcom] G4 as soon as possible. The DOC was very helpful – your first and second impressions posts, along with other reviews, made it pretty clear that this was an amazing device.

We danced with the insurance company, fortunately not for too long, and we had Evan’s CGM in hand in late February of 2013. I decided to start tweeting about it – it was a very real shift to a more optimistic attitude in all of us.

I was hooked, and the anxious father in me never wanted those numbers and trends to be more than a glance a way. Less than a week after getting the G4, using files provided with Dexcom Studio (libraries), we had a windows laptop pulling the data and sending to a simple Google doc for Laura and me to pull up throughout the day. I built a simple trend and number app for our iPhones that pulled this data – sitting in a dock at work, Evan’s BGs were a glance away.

I also wanted to cover the “gaps” in data – recess, walks around the ponds at daycare; arguably the riskiest times for a low to creep up on Evan. I then began to look into using a cellphone to read the G4, and send the data to a cloud service that any number of devices could pull from. I took family medical leave starting in April 2013: Evan’s honeymoon was ending, pump therapy was beginning, and Kindergarten prep wasn’t going to be as simple as we’d expected (plus, Laura and I were exhausted). I set aside a few weeks in May to see if I could make the cellphone chat with the G4. Fortunately, I didn’t let my technical shortcomings keep me from trying, and I figured it out pretty quickly. An Android app that can read G4 data became a thing!

This led up to an email from the wonderful Lane Desborough. We got talking, I shared my simple Windows uploader with him, and he began working on “Nightscout” – a glance-able BG chart that could be viewed throughout a home. After several months of testing, improving the Android app to work more reliably, I shared the code – Lane continued to develop Nightscout, with assistance from Ross Naylor – I leveraged the chart code in our own “Care Portal” and grabbed a Pebble watch to play with.

We continued to work on our apps and tools, more folks on twitter began to notice – and it became very clear that people really wanted this tool. It was life changing for us, and other parent’s immediately saw the value, the hope for a less complex, safer, healthier life it can bring. Freedom!

The “CGM in the Cloud” facebook group started from these early twitter interactions and helping just a few other d-parents looking for a better way. We have wonderful tools, but they can do more! Jason Calabrese, Jason Adams, and Toby Canning deserve the credit for scaling this system.

Jason Adams started the group, because he knew that we were not the only ones tired of waiting.

A simple tweet that started something bigger:

#wearenotwaiting was coined by Howard Look, d-parent and CEO of non-profit start-up Tidepool. It was the call to arms for the first “d-data exchange” hosted by Tidepool and DiabetesMine, just prior to their Innovation Summit in November 2013.

As a movement, it is all about doing more & not waiting for:

  • Anyone else to step up and change the standard of diabetes care.
  • To cut through the old proprietary systems of big medical.
  • To take ownership of our data.
  • To use the combined data (BGs, Nutrition, Insulin, and Biometrics) to unravel the unique mystery that
  • everyone’s T1d is.
  • To go out on a date with a spouse, without T1d’s shadow tagging along.
  • So many things!!

Kerri: What kinds of discussions have you seen taking place in the group?

JC:  Wonderful Testimonials! I can’t express how amazing it is to see so many people “taking back” from T1D.  Parents out on dates, children riding bikes, going on sleepovers – these events were either put off or filled with anxiety and fear over the constant “???” Removing the mystery makes it possible. It makes averting dangerous lows possible… To see others experience what we experienced, it is still overwhelming.

HELP! And lots of it freely given… New folks learn, and teach others, the combined learning of hundreds, now (potentially) 1,500+ people. How do you pack this setup together? How does your child carry it?  What phone works best? What cables do I need? How do I compile the code? I see the full spectrum of technical prowess in the group members, but no one should ever (and I hope hasn’t) feel that there are any questions off limits. I know, as I’m typing this, that there are at least 20 conversations going on covering how to install the pebble watch to the best Nintendo 3DS case to stuff this setup into.  The future! Don’t like ???’s We can see through them – Want less lag in your CGM data? That’s coming.

The discussions in the group also point out the very real shortcomings of a DIY system – all of a sudden, instead of just worrying about a sensor problem or being out of range – you have cell service drops, weak wifi, bad cables, phone battery life, all these new points of failure… but we work through them, because not one or all of those new concerns can topple the improvement in life the “CGM in the Cloud” brings.

Kerri:  How is this group moving current diabetes technology into tomorrow’s tech space?

JC:  CGM in the Cloud gives us a look at the future of connected devices – a space that consumer products are starting to fill, but medical devices lag. It’s understandable: regulatory delays, walled-off device ecosystems that, by design, keep you tied to a single device maker, and device hardware focus (not the integration or software) induce this lag (among many other things). CGM in the Cloud bridges this gulf in time – simply knowing how to “talk” to a device and get the same data we see on a receiver screen, that’s all we need to get started. The remaining technology is there to be bolted on and consume the available data, to display it in such a way that unobtrusively integrates it back into our lives. What works for me may not work for someone else, but that’s fine – there’s no limit to what or how we use or access the data.

Light bulbs that can turn themselves on, change color, audio systems that can wake up the neighborhood, an app that can call someone when conditions merit. Standards, and organizations like Tidepool will make this fly – I would much rather read a standards document than decode byte arrays. I would love a single platform or application that lets me talk to all of my medical devices – not three separate and poorly designed apps that I hate so much I never use anyway…

Publishing protocols and using standards will benefit device makers – I wonder how many new G4 Platinum systems have been sold because CGM in the Cloud exists? I know people that were on the fence between Enlite & G4 – and CGM in the Cloud was the deciding factor (I know people that have switched out right – Insulin suspend or Remote monitoring … remote monitoring was a bigger benefit to them)

Kerri:  Is this group only for Dexcom G4 users? Or is someone dabbling in Medtronic/Abbot space?

JC:  I “hacked” the G4 because it is the best CGM product for us, available to us – d-parents, PWDs – anyone that uses a medical device to keep them alive & well should be able to use device that suits them best. The company name on the device should be irrelevant – I have zero brand loyalty when it comes to CGM, BGM, and pumps – I will use the best product available, and that’s it.

If the Enlite is the best product for someone, and they want to use the CGM in the Cloud tools, they can – we just need to know how to get the data from a 530g to the cloud, preferably wirelessly, and the rest is ready to go. I actually think Medtronic would be doing themselves a favor by letting us know how to read the data in this way. As I mentioned, I know people that have switched or picked the G4 because they can see the data virtually anywhere in the world.

I hope these companies understand that something as “simple” as internet accessible, real-time CGM data makes a big difference for a lot of people.

Kerri: Do you fear the FDA? The CGM companies? Anything? (Or is part of the movement to also #techwithoutfear?)

JC:  I don’t fear the FDA or CGM companies … anymore. My biggest concern, and why it took nearly a year to make the code open source & available on github, is the fear of litigation from individuals. Covering those bases was extremely important. Doing all this work to make our (my family) lives better, only to risk financial ruin would’ve been, well, awful. Licensing, disclaimers, LLC’s – they can cover you pretty well, but it’s the larger CGM in the Cloud community that offers the most help. The programs that CGM in the Clouds use are part of an open source repository owned, not by me or anyone else, but to the group – it’s open to any and all contributors. Ben West has taken on curating the group code, and that code is as much yours as it is mine.

The FDA is coming around – the group will “pre-submit” to the FDA at some point, and if their new guidance is any indication, we could eventually see a “CGM Uploader” app in the “Google Play” store.

In fact, I have several apps and tools that remain private, and these regulatory changes would make sharing them a no-brainer.

Dexcom has been largely silent, but always aware of what we’re up to – I see very little reason to be afraid of them. Every interaction with them has been great. I hope they like what they see!

Kerri: I’ve downloaded the “CGM in the Cloud” high level set up. How easy is it for members to get one another suited up and running on a remote device?

Photo credit to the CGM in the Cloud Facebook grouplarger image here.

JC:  Pretty easy! From phone advice to actual setup help (Rajat Gupta is amazing, I think he’s helped over 60-70 people get it set up), it’s all there, and Facebook group posting style can make it challenging to find an answer – so a new post is always okay.

Laurie Schwartz, Jason Adams, and Jason Calabrese are the group admins, and they’ve done a great job guiding users and staying very current on the posts with their very sage advice. As much as any of us that wrote the original code may have done, they’re the ones that carry it up and on to a level I never would have thought possible. [Editor's note:  Look for more from Laurie tomorrow!]

Kerri:  John, why is this tech important to you?

JC:  It makes life better, it gave Evan a school year with but a single BG below 60. It gives Evan non-diabetic A1c’s – with pizza and cake still on the menu! And hypo and hyper a mere 1% for over a year. (Caveat: Evan eats anything and everything, which allows very good timing and 100% pre-bolus capabilities – solving for specific foods by collecting the data, analyzing and improving the bolus strategies)

It lets Laura and I go on dates, and actually pay attention to something other than diabetes!  Evan and Sarah can play for hours outside, without mommy and daddy hovering or interrupting constantly.  As I’ve said before, it takes back some of what type 1 took from us that day in August.

Technology is only as good as the good it does for people. If it doesn’t make life better, easier – skip it,find something that does. For us, and our use, it goes beyond merely seeing BGs all the time. The increased awareness, even at its most passive, helps us understand diabetes a little better, and it gives a CWD or PWD a team of people that understand it as well. Our school nurse is amazing, and she used a custom site (which will end up in the open source repositories this summer) to view his BGs, log treatments, and view those treatments on the same Chart. Her own intuition about Evan’s diabetes was key to a virtually hypo-free year.

I hope the shared awareness continues to lighten the burden for Evan, and helps prevent burnout as the tasks ramp up. I told him, if we haven’t cured it, I will always be happy to mind his diabetes if he needs a break from it – whether 13 or 53. Technology like this enables me to do just that, without actually impeding or limiting Evan’s ability to enjoy life.

Kerri:  And lastly, how can the greater DOC support this movement?

JC:  Share use cases – how would you make it better, how could it make your life better? YMDV, and no system will meet all needs all the time, but we can try – the beauty of a crowd-sourced tools like this -someone else probably wants what you want, and if you’re alone, there’s still someone more than willing to help make it happen for you.

The DOC can spread the word, and help build the community. Together we can show the device makers what products we really want – if a group of 1,500 can get some attention – the stronger our voice, the better. It’s hard to find better motivated people than the DOC – what we do to keep ourselves, a child, a spouse, a friend, (and so on) happy and healthy comes from a place of great love. I suspect our best ideas, our biggest innovations come from the heart, and not a desire to make money.

Thank you, John, and to learn more about CGM in the Cloud, visit the Facebook group. 1909 members … and counting. More about this group from group admin and D-Mom Laurie Schwartz tomorrow!

How Real Do You Want It?

Over the last few weeks, I’ve been watching the articles about Lisa Bonchek Adams circle, ranging from the New York Times opinion piece by Bill Keller to the one written by Emma Keller (his wife) for The Guardian (which has been removed from The Guardian site but lives on in the archives), to the response piece written by Brian Loew at The Healthcare Blog and analysis by Susannah Fox on the Pew Research Center Fact Tank blog.

(That’s a lot of links in one paragraph.  I’ll wait while you click.  And please note that none of those links go to any dancing gerbil .gifs.   But this does.)

Lots of discussion about a patient who is sharing raw and unfiltered details of her experiences with cancer through social media venues.  For better or for worse, this is the new scrutiny of health on the net, and of real life chronicled on the Internet.

“Are those of us who’ve been drawn into her story going to remember a dying woman’s courage, or are we hooked on a narrative where the stakes are the highest? … Would we, the readers, be more dignified if we turned away? Or is this part of the human experience?” – Emma Keller

For me, chronicling my experiences with diabetes, it’s not for the “outsiders” who are looking in; it’s for the people who share that same condition, same disease, same struggle and who learn, thrive, and persevere through the power of common community and understanding.  Readers may have the option to “turn away,” but for those who live with chronic illness, we have no choice but to look directly into it.

Is there a right way to deal with illness?  A wrong way?  How real do you want it?

 

I learned about living with type 1 diabetes, and the “forever” journey that it is, through other people who had it.  Blogging wasn’t the first time I came into contact with other people living with type 1 diabetes.  Community came through the Clara Barton Camp in North Oxford, MA, where every camper had type 1 diabetes and almost every staff member does, too.  But there was a lonely, isolating gray area between aging out of camp and the coming-of-age of the Internet where diabetes was difficult for me.  Being a teenager, and then becoming an adult, was a tough transition, and even though I had a good support system through my family, friends, and medical team, I was lost in a sea of people who didn’t understand how light diabetes could feel on some days and how heavy it was on others.

Some people are uncomfortable with the idea of sharing so much private, personal health information on the Internet.  Hell, I totally understand that sentiment, as I was fumbling through Facebook yesterday trying to figure out how to delete people I hadn’t interacted with in years.  It’s not a flippant decision, the one to advocate for your own health and to share your story.  Scrape past the hesitation and the fear, however, and you’ll find people who are empowered by sharing, and lifted up by a community that has intrinsic knowledge of the places that hurt the most.

Over the last few years, I haven’t felt the “diabetes won’t stop me!” mentality I unwittingly held close for the first two and a half decades with this disease.  Though my health is still good and I am grateful, I’m seeing the emotional and physical manifestation of years with type 1 diabetes in sometimes small, and other times enormous, ways.  Patients with diabetes are writing about climbing mountains and running marathons and giving birth, but we’re also writing about complications like depression, eye disease, and eating disorders.  Even if it makes you feel uncomfortable, it’s real.

Being honest about life with illness and disease can be the best, albeit non-prescribed, ‘medication’ yet.  While it may also frighten and unnerve, honesty and community can validate, and empower, and inspire.

To quote Morgan Gleason, the fifteen year old who contracted meningitis while getting an infusion for an autoimmune condition:  “I am the patient.  I need to be heard.”

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