Dose tracking using Bluetooth clicker

[goyocafe]

Saw this on the Afrezza Facebook page. Pretty ingenious. Reminds me of PWDs hacking older insulin pumps and making their own APs. They we’re tired of waiting for the FDA and lengthy trials and roadblocks delaying development of new devices.

m.facebook.com/groups/1491153011166114?view=permalink&id=2370001659947907&anchor_composer=false

You have to scroll down a ways or look for a post by Jeneane Solz


Image of the Flic button attached to the inhaler mouthpiece

[rtmd]

But then you not only have to remember to push the button each time, but you also have to remember whether you pushed the button the last time or not. Seems overly complicated to me.

[goyocafe]

Jun 14, 2019 1:01:27 GMT -5 rtmd said:

But then you not only have to remember to push the button each time, but you also have to remember whether you pushed the button the last time or not. Seems overly complicated to me.

<iframe width="36.07999999999993" height="2.9200000000000017" style="position: absolute; width: 36.07999999999993px; height: 2.9200000000000017px; z-index: -9999; border-style: none;left: 15px; top: -5px;" id="MoatPxIOPT0_34866730" scrolling="no"></iframe>

<iframe width="36.07999999999993" height="2.9200000000000017" style="position: absolute; width: 36.08px; height: 2.92px; z-index: -9999; border-style: none; left: 1731px; top: -5px;" id="MoatPxIOPT0_10837936" scrolling="no"></iframe>

<iframe width="36.07999999999993" height="2.9200000000000017" style="position: absolute; width: 36.08px; height: 2.92px; z-index: -9999; border-style: none; left: 15px; top: 87px;" id="MoatPxIOPT0_62989126" scrolling="no"></iframe>

<iframe width="36.07999999999993" height="2.9200000000000017" style="position: absolute; width: 36.08px; height: 2.92px; z-index: -9999; border-style: none; left: 1731px; top: 87px;" id="MoatPxIOPT0_38335083" scrolling="no"></iframe>

If I read it correctly, it time stamps the events so you know by quickly looking at the readout. Considering you have to remove the mouthpiece cover, it's pretty hard to not press the button. But to each his own. I thought it was interesting.

[rtmd]

Yeah, I was just tossing out my immediate reaction to your idea. The whole appeal -- to me at least -- is simplicity of the device. It shouldn't be rocket science to use an inhaler or to remember to inhale at the beginning of a meal. It shouldn't need bluetooth or bluhale or blue anything else to use. When I read that facebook afrezza users page, I'm amazed at the difficulties some of them have.

[sportsrancho]

Jun 14, 2019 0:54:23 GMT -5 goyocafe said:

Saw this on the Afrezza Facebook page. Pretty ingenious. Reminds me of PWDs hacking older insulin pumps and making their own APs. They we’re tired of waiting for the FDA and lengthy trials and roadblocks delaying development of new devices.

m.facebook.com/groups/1491153011166114?view=permalink&id=2370001659947907&anchor_composer=false

You have to scroll down a ways or look for a post by Jeneane Solz


Image of the Flic button attached to the inhaler mouthpiece

Not letting me scroll down.

[goyocafe]

Jun 14, 2019 7:37:27 GMT -5 sportsrancho said:

Jun 14, 2019 0:54:23 GMT -5 goyocafe said:

Saw this on the Afrezza Facebook page. Pretty ingenious. Reminds me of PWDs hacking older insulin pumps and making their own APs. They we’re tired of waiting for the FDA and lengthy trials and roadblocks delaying development of new devices.

m.facebook.com/groups/1491153011166114?view=permalink&id=2370001659947907&anchor_composer=false

You have to scroll down a ways or look for a post by Jeneane Solz


Image of the Flic button attached to the inhaler mouthpiece

Not letting me scroll down.n

Did you try the first link? 

[goyocafe]

Jun 14, 2019 0:54:23 GMT -5 goyocafe said:

Saw this on the Afrezza Facebook page. Pretty ingenious. Reminds me of PWDs hacking older insulin pumps and making their own APs. They we’re tired of waiting for the FDA and lengthy trials and roadblocks delaying development of new devices.

m.facebook.com/groups/1491153011166114?view=permalink&id=2370001659947907&anchor_composer=false

You have to scroll down a ways or look for a post by Jeneane Solz


Image of the Flic button attached to the inhaler mouthpiece

Someone else in that same thread indicated they log their Afrezza doses using the Dexcom log. It got me thinking that the sooner Mannkind gets something going with their data collection and reporting, the sooner the company can offer the data as part of a managed care solution.
Just look at the log above and you can quickly see how this data, merged with the output of a CGM, would be invaluable to understanding dosing (cause and effect) along with the overall impact Afrezza is having on a PWDs bg levels.

[shawnonafrezza]

Jun 14, 2019 6:41:47 GMT -5 rtmd said:

Yeah, I was just tossing out my immediate reaction to your idea. The whole appeal -- to me at least -- is simplicity of the device. It shouldn't be rocket science to use an inhaler or to remember to inhale at the beginning of a meal. It shouldn't need bluetooth or bluhale or blue anything else to use. When I read that facebook afrezza users page, I'm amazed at the difficulties some of them have.

Turns out a chronic disease you babysit 24/7 sometimes leaves you a little frazzled. And this is why the DIY community make their own APS, every company out there sat on their asses saying "X" was what we really wanted and now even the most advanced commercial APS is about two generations behind what a few [extremely talented] people wrote.

Here's an easy example using my life. Say I'm eating lunch, it takes me about 8 minutes. I like to dose 15 minutes post meal. So I just finish eating an a junior engineer needs something and me being the nice dude I am I go to help. Maybe it takes a bit and how it's been 20 minutes post meal and I think, "shoot, did I take my insulin?". You might way, look at your cgm (which I can do with Afrezza unlike analog) and decide but what if that's not telling me enough? What if I could bust out my phone and see if I took my dose before leaving because I knew it'd take a bit or did I not because I thought it'd be a 2 minute thing? Do I want to bet which one I did? You **can** take too much Afrezza so do I risk that? I have a meeting in 15, should I maybe double up the dose and go hypo during it? What if I needed it, do I want to have my cgm alarm go off because of a missed dose? If only I had a muscle memory on hitting a clicker or the inhaler tracking what I did so I wan't in this situation!

The customer is always right isn't a right to act like a jerk, it's a saying that what the customers actions are and what the customer does is what the customer wants. We're your customers, we know what we want. I sure as hell do after 14 years.

Sometimes reading the posts here make me sad. Some of you are no better than doctors blaming us for when things go wrong. Life goes wrong. Diabetes is hard. Diabetics [often] do their best. But I guess you're just upset that we're so stupid and how could "just breathe" be so hard? If a large segment has trouble with your treatment it's not the populations fault.

[rtmd]

Jun 14, 2019 9:42:45 GMT -5 shawnonafrezza said:

Jun 14, 2019 6:41:47 GMT -5 rtmd said:

Yeah, I was just tossing out my immediate reaction to your idea. The whole appeal -- to me at least -- is simplicity of the device. It shouldn't be rocket science to use an inhaler or to remember to inhale at the beginning of a meal. It shouldn't need bluetooth or bluhale or blue anything else to use. When I read that facebook afrezza users page, I'm amazed at the difficulties some of them have.

Turns out a chronic disease you babysit 24/7 sometimes leaves you a little frazzled. And this is why the DIY community make their own APS, every company out there sat on their asses saying "X" was what we really wanted and now even the most advanced commercial APS is about two generations behind what a few [extremely talented] people wrote.

Here's an easy example using my life. Say I'm eating lunch, it takes me about 8 minutes. I like to dose 15 minutes post meal. So I just finish eating an a junior engineer needs something and me being the nice dude I am I go to help. Maybe it takes a bit and how it's been 20 minutes post meal and I think, "shoot, did I take my insulin?". You might way, look at your cgm (which I can do with Afrezza unlike analog) and decide but what if that's not telling me enough? What if I could bust out my phone and see if I took my dose before leaving because I knew it'd take a bit or did I not because I thought it'd be a 2 minute thing? Do I want to bet which one I did? You **can** take too much Afrezza so do I risk that? I have a meeting in 15, should I maybe double up the dose and go hypo during it? What if I needed it, do I want to have my cgm alarm go off because of a missed dose? If only I had a muscle memory on hitting a clicker or the inhaler tracking what I did so I wan't in this situation!

The customer is always right isn't a right to act like a jerk, it's a saying that what the customers actions are and what the customer does is what the customer wants. We're your customers, we know what we want. I sure as hell do after 14 years.

Sometimes reading the posts here make me sad. Some of you are no better than doctors blaming us for when things go wrong. Life goes wrong. Diabetes is hard. Diabetics [often] do their best. But I guess you're just upset that we're so stupid and how could "just breathe" be so hard? If a large segment has trouble with your treatment it's not the populations fault.

Well, when I originally looked at the stock, what attracted me was the simplicity of the device when compared to pens and pumps.  I take a blood pressure pill four times a day. Simple, I pop the pill with a sip of water and go about my business. That's how I envisioned afrezza. I'm just surprised at how much more complicated it is. On the facebook users page, "Sam Finta" noted some issues:

"1. Cleaning out residue from your inhaler prior to the 2 week discarding.

2. Should you split your dose of basal into am/pm. For many this works the best.

3. If you are insulin sensitive....splitting a 4u into 2 unit doses and how to do it. Some have made youtube videos about this.

4. Take Afrezza before meal or after the start? Fda label calls for start up to 10min after the start. If sugar is low or insulin sensitive you might want to wait till it starts rising.

5. Follow up dosing which acts as a 2nd phase insulin the body normally releases around the 75min to 90min mark in its natural process. If you dont do follow up dosing you have no 2nd phase insulin. On very small meals not always required.

6. Am I taking enough basal? If your sugar is rising at night or between meals once you know your previous meal has been digested you might not be taking enough basal.

I could go on and on but these are some of the recent issues and questions."

He could "go on and on"?  I just never saw any of all that coming.  

[shawnonafrezza]

Half of that is just diabetes. Until there is a cure (lol), encapsulated cells (see Viacyte), or better APS systems those will always be problems. You don't realize how complicated the disease is until you live with someone who has it or have it yourself. I'm sure a lot of people are in the same boat as you, for sure a lot of drug companies are.  

To put it in perspective, this is an APS running:
imgur.com/a/auIzc5f

The dotted blue line in the third graph is what the users basal is, every deviation from that is the APS reacting. For everything else:

1. No different than needle usage. People just aren't told and it's not as obvious.
2. Depends on the person and the insulin used, not really an Afrezza thing.
3. A diabetes thing and an Afrezza issue. Lots of people have been asking for 2U. If you're under 130# you probably need it.
4. Just a diabetes thing once again and how your body/meal reacts. No drug can fix it.
5. The curse of ultra rapid Afrezza.
6. Same as #2.

Diabetes is just problem after problem. No drug, ever, will fix this.