I know you are out there. Show yourselves! I am behind. Trying to run some tests. Acquainting myself with the G6. Hoping to buy a Mac Mojave laptop this weekend for as cheap as possible. Then, I will have all my hardware. Anybody running a blog? If so, can you post a link here?
I’m chronicling my experience here: https://www.diabetesdaily.com/forum/threads/i-bit-the-bullet-im-doing-loop.130120/ .
If you want to save money, do a virtual machine on your PC.
I would definitely recommend reading both sites through twice at the very least to familiarize yourself with the steps and to make sure you do at least basal testing to confirm you basal #s are ok.
Allow plenty of time and be patient! It’s worth it.
Oh, and as soon as you can, I would order a backup rileylink. Without it, you have to stop looping and sometimes they go on back order. I can’t afford one right now but am going to as soon as I can.
Thanks BradP. I did set up a VM. But, couldn’t find one with Mojave and gave up. I just bought a used Mac and Ill go through the setup again, down the line, and see if I can get it working through the VM.
Yes, I need a backup RL. Your right, everything is a little pricey upfront. Its the high cost of free, lol.
I start setup tomorrow. I have everything I need, now. Thanks for the link to your thread.
What are you hoping to gain from a blog? The Facebook group is very helpful. However with so many new loopers, it is choppy and doesn’t flow like a story. Is that what you are looking for?
Yea, I guess that I am just looking for a start to finish user experience. I spoke with a woman the other day for an hour. I found BradPs write up really helpful. It answered a lot of questions.
I think facebook is good for getting a broad survey of the types of problems that people encounter. It good for helping people announce one very specific problem,. But, I feel like the platform is not very conducive to in-depth conversation or problem solving. I would describe it as kinda ‘chatty.’
For some reason, I find the Tu platform much superior in that regard. But, I was able to search BradPs posts to answer some really basic questions - like how many days it took him to set the thing up.
Loop supportive Doc List from FB: https://docs.google.com/spreadsheets/d/1zMWkBt2A_Q_U2FakXrH4wmHKcMYZTrdA7iesxt9GKdM/edit#gid%3D1708172128
I see. I’ll give it some thought. The first thing that pops to mind is Katie DiSimone’s blog, but I don’t know if she maintains that or if it would be completely relevant with changes in Loop since she wrote it…I can’t find it!
I will return if I come up with something.
Here’s Katie’s blog, See My CGM. https://seemycgm.com/
that’s a great blog! Sparse looking but content is excellent.
I’m trying to keep my post over at DD up as best I can.
My latest problem is that I’m roller coasting and running high at the same time. Looks like I just need to bite the bullet and do the basal testing like her post says at https://seemycgm.com/2019/05/14/juicebox-method-to-loop/ .
OMG, BradP, you didn’t test the basals? I wish I had a good “shame on you” meme - I am giving you a disappointing look, lol. You are “cowboy-ing” around with this thing.
They talk about roller coaster-ing specifically as indicating an improper setting, in particular. I’m gonna find where thats cited while you test the basals.
I had mine set perfectly a month ago, but they have come out of alignment and I have to do them all over again.
Formal basal testing is a bit of a pain to do but it is worthwhile. Changing basal rates, however, is not a set-it-and-forget-it one time exercise. Diabetes is a dynamic disease and until you learn to roll with the punches, you’ll struggle to keep up with the latest mayhem diabetes invokes.
What I’m trying to say is that you need to learn how to test your basal rates. Once you do that for a while, you’ll start to get a gut sense of what’s needed and then be able to make changes on the fly without having to go through the formal process.
I think of this like a jazz musician. An aspiring jazz musician studies the rules and diligently follows them. Once the rules become second nature, the creative musician can start to improvise and elevate the music to a higher level. You have to religiously stick to the rules before you can then deliberately and strategically break them.
For great diabetes management you need to be willing to do the tedious work while learning how your personal glucose metabolism works. Once you know the nitty-gritty of your situation, you can improvise to good effect.
Having said that, I know from long experience that diabetes is never a puzzle permanently solved. You have to observe, experiment, analyze, implement and iterate.
So good that you are on the journey!
I’ve got a blog:
I was on OpenAPS for the first year and have been using Loop for the past two months. Trying to flash an Edison today to set up another OpenAPS rig so that I can try the dev branch of OpenAPS and also hoping to set up AndroidAPS. Not sure how I’ll go as I’m far from technical. My partner helped me out with the first rig and now I’m pretty much trying to figure it out myself. It’s a headache. CGM is almost prohibitively expensive, but after 39 yrs+ of t1d, I’m feeling a strong urge to live the dream. Will try to update the blog as I go in case it’s useful to others.
I also wrote up my experiences for the Australian Diabetes Educator journal which was published last week . You can find it online here:
cheers, and Good Luck!!
Thanks a bunch, @MA11!
Great reports, Mary Anne! I listened to the ABC (Australian Broadcasting Corporation) 17-minute radio explanation of how these systems work. It targets a non-diabetic listening audience and explains the challenge of diabetes in an accessible way. I particularly like their use of the term, Goldilocks zone, to describe the ideal glucose zone that resides between the twin dangers of hyper- and hypo-glycemia.
Your three 3-month Dexcom Clarity AGP reports showing the three months before starting to loop (OpenAPS), the first three months of looping, and where it settled many months in are highly persuasive.
I also like the point made when addressing the almost immediate and reflexive criticism offered by people first exposed to the concept of do-it-yourself experimental glucose management, that it is not safe. The point is well made that the pre-looping treatment plan adopted and authorized by the traditional medical establishment is much less safe than a thoughtfully adopted DIY looping system. DIY looping improves personal safety.
By the way, I did have to look up the meaning of the British English, “bespoke,” when referring to the DIY system. I learned that it means customized or made for a particular customer or user. I love hearing/reading the wider vocabulary usage on non-American English!
I really love your summary of what you found most pertinent. And yes aren’t ‘bespoke pancreas’ and the ‘goldilocks zone’ delightful terms. James Burren, the producer of the ABC Health Report and Science Show, was such an intelligent, compassionate and respectful interviewer. I loved the way he put that story together.
I think listening to that show was the first time my kids and my 83 mother actually finally understood what it’s like to live with type 1 diabetes!!! It’s good to have both references to point people to and I’m hoping can also add just one small voice to an argument for funding/subsidising CGM in Australia.
I’ve found that starting Loop two months ago has put me onto a new learning curve. I’m still ‘learning to drive’ it. So for me, there’s the initial improvement offered by the system itself, then for further benefits, there’s a behavioural component and tweaking of settings required which takes extra ‘head space’.
Thanks again for the feedback. So glad we finally have these tools!
Heres where they talk about roller-coastering in the documentation. How’s it going lately? I am inputting my settings for the 1st time. As much prep work as I did, I do still feel like I am “cowboying” it. Lots of unknowns. https://kdisimone.github.io/looptips/settings/settings/#3rd-insulin-sensitivity-factor
I find that this definitely has a learning curve but I like learning! Before when it was my ‘dumb’ pump Omnipod and Dexcom G6 that didn’t talk to each other, settings weren’t as crucial. Now they are!
Yea, my settings for meals might be a little messed up. I will definitely have to do some fine tuning. I think it is helping eliminate the extremes of BG a bit so far. I’m not gonna post any data until I have a week of it, though. I just started. My basals were perfect, but the other settings are kinda a crap shoot.
I started using the jojo branch a few days ago and am finding that it gives me tools that were missing from the 1st generation Omnipod Loop. You can also use jojo with Medtronic. It essentially allows me to use override temp insulin increases or decreases. It is similar to temporary basals although I think the override applies to all insulin delivery. Because I seem to have significant differences in insulin absorption with Omnipod from site to site, this allows me to increase insulin rates for pods that aren’t working as well. And then if I have sticky highs for other reason, I have a tool to help bring it down. https://github.com/Kdisimone/Loop/wiki?fbclid=IwAR3iaClOO3ET9Fk2-dbTfU1EBxbzRd7ehd79GIRvUzcqYtXDnf8bNpjed_s