Jamie Pauls
In the February 2017 issue of AccessWorld, I wrote the first of a series of articles relating my experiences with diabetes management as a totally blind person. In that article, I shared my struggles when it came to performing finger sticks in order to regularly monitor my blood sugar. Since that first article was written, I have become more adept at getting enough blood to successfully check my blood glucose, but I still find the process to be tedious at best, and downright frustrating at worst. There have been many times when I didn’t bother to check my sugar before bedtime. It wasn’t that I didn’t want to know the truth, but rather that I anticipated the lengthy ordeal ahead of me. It was easier to go to bed and promise myself that I’d check first thing in the morning. I might keep my promise to perform a finger stick first thing the next day, or I might wait until halfway through my day to check my glucose level. It wasn’t at all unusual for me to go two or three days without checking my blood sugar at all.
If I managed to perform regular blood glucose checks at home for a few days or weeks, I almost never checked when I was out and about. Juggling my blood glucose meter, lancets, test strips, and tissues for wiping away excess blood was often more trouble than it was worth. Finally, I needed to check my blood sugar somewhere private enough that the whole world didn’t hear my glucose meter announce the results of the test, or else add a set of earbuds to the list of things to keep track of.
To be fair, my Prodigy Glucose meter gave accurate results, something I was able to verify when I visited my physician for checkups. If I managed to regularly check my blood sugar, I was able to predict what my A1C would be when my lab results came back based on the readings from my Prodigy meter. There are lots of tools on the Web that will convert the average number on your glucose meter to A1C results.
As a type-2 diabetic whose blood sugar tends to run high, I soon learned that I couldn’t always guess whether my blood sugar was high or in target range for me if I didn’t perform finger sticks and test my glucose levels. I usually had some idea of what my average glucose readings were over a three-to-six month period of time, but I still waited with nervous anticipation and even dread for my next doctor visit.
Several months ago, I began hearing from blind people who were using a wearable continuous blood glucose monitoring sensor that interfaced with a glucose meter. This device was the FreeStyle Libre from Abbott Labs, a company located in Canada. These blind individuals were using OCR programs such as Seeing AI on their iPhones to read the screen of the FreeStyle Libre reader in order to get their most current blood glucose readings. While I applauded their willingness to jump through some hoops to use the FreeStyle Libre, I didn’t feel that I would gain that much by switching from my current method of checking my blood sugar. It wasn’t until an iPhone app that obtained readings from the FreeStyle Libre sensor was released in the US that I became truly intrigued with this product.
There were some blindness-specific podcasts that talked in basic terms about the FreeStyle Libre, but I walked away with more questions than answers. I gave my friend Jeff Bishop a call. Jeff had used another continuous glucose monitoring system for some time, but he had recently switched to the FreeStyle Libre. My phone conversation with him answered many of my questions, and I knew I was ready to give the FreeStyle Libre a try. A Twitter conversation with Caroline Toews, another blind person whom I knew also struggled with performing finger sticks and who had made the switch to the FreeStyle Libre before the release of the iPhone app, convinced me even further that I was making the right choice. Both Jeff and Caroline used words like “life-changing” to describe their switch, and I knew these individuals to be people not given to hyperbole.
Along with my personal conversations, I began watching a ton of YouTube videos about The FreeStyle Libre. None of these were produced by blind people, but I gained a lot of valuable information from them. Most of these videos were from individuals who simply shared their impressions, and were not videos professionally produced by Abbot Labs.
The FreeStyle Libre is not currently available without a prescription from your physician, so I needed to talk with my doctor, who was willing to let me try out the system. My local pharmacy was able to obtain the sensors for me, so I was off and running.
As with any continuous glucose monitoring system, Abbott recommends that you have a backup system that allows for traditional finger sticks. There are several reasons why this is important with the FreeStyle Libre. One reason is that if your readings are extremely high or low, you need to verify the result with a finger stick. Another reason is that the FreeStyle Libre measures glucose levels from the interstitial fluid found under the skin of your arm—the only approved site for wearing the sensor—which causes the glucose level reading to be a bit higher than that of a finger stick. Finally, although the sensor checks your blood glucose level every minute or so, it gives an average of the last 15 minutes when you scan with your iPhone in order to get a reading. This means that the FreeStyle Libre is a bit behind an actual finger stick. If your blood sugar is dropping rapidly, you will need to stick your finger in order to get the most current number.
Abbott would like for you to purchase their reader along with the replaceable 14-day sensors you will use, but I chose to keep my Prodigy talking Glucose meter since it was more accessible than Abbott’s reader. Since my insurance does not cover the cost of my FreeStyle Libre sensors, I pay a little over $80 a month for two 14-day sensors.
Setting Up the FreeStyle Libre Sensor As a Totally Blind Person
For me, applying the FreeStyle Libre sensor to my arm couldn’t be easier, although I had my sighted wife observe the process during my first two sensor applications. In the box, you will find a sensor applicator and the sensor pack itself along with two alcohol wipes for cleaning your arm before applying the sensor. I alternate between my right and left arm each time I apply a new sensor so I don’t have any issues with skin irritation. I have had absolutely no problems in this regard. The only approved site for wearing the FreeStyle Libre Sensor is the back of the arm. As a blind person, I wasn’t quite sure exactly what this meant. After showing one of Abbott’s official YouTube videos to my wife, we determined that I would place the sensor on the upper part of my arm. As a point of orientation, I will explain things this way: I am currently wearing the sensor on my left arm. As I run my right hand across my left bicep and past the large bone in my upper arm, my sensor is located on my arm just in front of where my arm curves around to the underside. When I scan the sensor with my iPhone, I activate the Check Glucose button and hold the phone flat next to my arm. It doesn’t have to touch. I move the phone toward the back of my arm until it hovers over the sensor. It takes almost no time for me to feel a haptic vibration and hear a tone that lets me know the sensor has been scanned. I am then able to read my current blood glucose level using VoiceOver on my phone. More about that later. First we need to apply the sensor.
The sensor applicator is a plastic cylinder that has a cap on top. Unscrewing the cap reveals the part of the applicator that contains a spring-loaded needle. No worries. The needle doesn’t stay in your arm. It is used to insert a filament under your skin that monitors your blood sugar. After the cap has been removed from the applicator, peel the plastic top from the sensor pack. One YouTube poster described this as akin to removing the top from a can of Pringles potato chips. The sensor pack is round except for one area that comes to a point. The outside of the sensor applicator contains a tactile line that must be lined up with the point of the sensor pack. The applicator fits inside the sensor pack, and you press the two pieces together until they click. Then, pull the pack away from the applicator and discard it. Next, use one of the alcohol wipes to clean your arm, and let the area dry. Finally, place the sensor applicator, which now contains the sensor inside, on your arm, and press down firmly. I have literally never felt any sensation at all when applying a sensor. After I hear the click of the sensor leaving the applicator, I hold it on my arm for a few seconds to make sure the adhesive on the back of the sensor has caused the sensor to stick tight to my arm. Next, gently pull the applicator away from the sensor, something that will require almost no force at all. You are left with a sensor on your arm that is about the size of two quarters stuck one on top of the other.
As I go about my daily routine, I am almost never aware of the presence of the sensor. Even sleeping with it on my arm isn’t an issue. I will very occasionally feel a bit of pull if I move my arm just right, and I have bumped the sensor a few times. I experience almost no discomfort, and I have never been able to dislodge the sensor from my arm. Even after 14 days of use, the sensor is still stuck tightly to my arm when I pull it off. There is a slight amount of discomfort when pulling the adhesive tape off my arm, but nothing to dissuade me from using the sensor. Although there is some residue on my arm when I remove the sensor, I’ve never had any issue with the sensor coming away but leaving a large amount of adhesive behind. Also, I’ve never been aware that the filament under my skin has come out of my arm when I remove the sensor. Everything happens in one quick motion.
Using the FreeStyle LibreLink iPhone App
Prior to applying your first sensor, you should download the free LibreLink app for your iPhone. There are a few things you will do during setup of the app, including setting up a free account on the Web. This allows your data to be downloaded and printed later, or you can simply show your phone to your doctor on your next visit. Among other things, you can see graphs of how your glucose levels are doing, view a log book of recent scans, and add notes about meals you have eaten, etc. I have not played with adding notes to the app.
After you have applied a sensor, you will activate the button in the app that allows you to scan a new sensor and go through the process of scanning as though you were taking a glucose reading. It takes one hour for the sensor to be available for actual scanning. The sensor may be less accurate during the first 24 hours of use, but I have found that things settle down more quickly than this. There are times when I have found the reading from the sensor to only be one point off from the results I get with a finger stick and my Prodigy meter.
It is necessary to scan the sensor with your phone no more than once every eight hours in order to avoid gaps in data that is stored for later examination, but I scan much more frequently. One YouTube poster stated that they scanned 40 times a day. Unlike other continuous glucose monitoring systems, the FreeStyle Libre does not push information to your phone or its reader. In other words, you will not be notified if your blood sugar is too high or too low. You must scan the sensor in order to obtain a reading.
VoiceOver reads the results of scans with no problem. There is a setting in the app that allows your results to be read automatically as soon as you scan. Also, this setting tells you whether your glucose levels have been trending up or down, and how quickly or slowly this is happening. The automatic read-out is too slow for my liking, so I use VoiceOver. Unfortunately, VoiceOver does not give any indication about which direction your levels are moving. I hope Abbott Labs will add this ability in a future update to the app.
I don’t find some of the app’s reports to be friendly to access with VoiceOver, but considering the visual nature of these graphs, I’m frankly not surprised. I am able to easily read average glucose levels for 7, 14, 30, and 90 days. VoiceOver only indicates blank areas of the screen when selecting these different averages, but a query of the screen lets you know where you are. For example, you will hear “54 of 90 days” to let you know how many days of data are available for the period you have selected.
The log book is very straightforward and lets you review results from scans you have made on any given day.
I have not asked my sighted wife to view graphs of my blood glucose trends, but I plan to do that in the near future in preparation for showing these reports to my doctor. I have not had the FreeStyle Libre system long enough to be able to present these results to my physician.
Final Thoughts
When I got my first FreeStyle Libre sensor over the holidays, I didn’t feel like spending the money for a second one as soon as the first expired—something the app notifies you of, by the way. I had developed a habit of regularly checking my blood sugar since using the sensor—you can’t check too often—and I thought I might be motivated to do finger sticks since I saw how valuable this information really was. I stuck myself faithfully for about a day. When I was able, I purchased another set of sensors, and I don’t plan to let myself run out going forward.
I find that I now monitor my glucose levels the way any conscientious diabetic should—in the morning, at night, and before and after meals. Even if I don’t always actively scan, I do so regularly enough that I have no gaps in data so I can feel confident about average glucose readings. I did not purchase Abbott’s reader, but it is worth noting that the reader and iPhone app do not share data with one another. When activating a new sensor, you must scan the sensor with the reader first and then with the iPhone.
I find the sensor to be easy to apply without sighted assistance, and I am almost never conscious of the presence of the sensor on my body. Abbott Labs says you should not keep the sensor submerged in water for more than 30 minutes at a time. I am not a swimmer, but those who are might want to take this into account when considering whether to use the FreeStyle Libre system.
To my knowledge, there haven’t been any updates to the LibreLink app since I installed it, and I will admit to having some concerns about how committed Abbott Labs is about accessibility. If an update breaks accessibility in this app, I am definitely out of luck.
Also, not all blind people are smartphone users. Abbott needs to consider creating a talking glucose meter for those who can’t afford, or simply choose not to use, smartphone technology.
When I look back on the stress I felt at needing to learn how to stick my finger and get blood on a regular basis when first diagnosed with diabetes, I can’t help but think about how much more time I could have devoted to learning about managing my disease through healthy eating and exercise while letting the FreeStyle Libre monitor my glucose readings. I would have been better able to regularly check my blood sugar, especially in those early days of treatment.
I find the FreeStyle Libre to be a truly liberating, life-changing product. I hope that Abbott Labs can work with the blind community to make a great product even better in the future through steps such as improving the accessibility of the app and creating talking glucose meters for those who choose not to use a smartphone.
Product Information
FreeStyle Libre sensors come in 10- and 14-day options. I recommend the 14-day sensor. Prices will vary depending on where you get the sensors and whether your insurance will pay for some or all of the cost. The sensors are currently available only with a prescription from your physician.
Get the LibreLink smartphone app here. The Android app is currently under development.
This article is made possible in part by generous funding from the James H. and Alice Teubert Charitable Trust, Huntington, West Virginia.
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