Braille Monitor                                                 February 2012

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The Right Information

by Paris Roach

Mike FreemanFrom the Editor: We asked Mike Freeman, president of the Diabetes Action Network, to comment on the following editorial by Dr. Paris Roach, editor in chief of Diabetes Forecast, which first appeared in the December 2011 issue. This is what Mike says:

Most of us are used to diseases which can be cured by medications and a bit of medical advice. The role of the patient is essentially passive. By contrast, good diabetes control requires the diabetic to play an active role in the management of the disease, making many day-to-day decisions involving medications, food, nutrition, and exercise. Moreover, diabetes affects each person differently. Thus, in order to make knowledgeable diabetes management decisions and in order to provide diabetes care personnel with the information they need to assist in solving diabetes care problems, good record keeping is a must. Yet my reading of the messages on NFB’s Diabetes-Talk email list for the past six years leads me to believe that few blind diabetics keep adequate records. All too often they just take their meters to their doctors’ appointments and depend upon the doctors to read the meters or download meter results to their computers. As the editorial below indicates, this practice has numerous drawbacks. In addition to those cited, blind people occasionally get an erroneous reading because of too little blood on the meter strip, and meters available in this country don’t allow editing of readings so that diabetes care personnel aren’t getting a true picture of day-to-day glucose readings, because the anomalous ones are included.

I also suspect that many blind people find record-keeping inconvenient since one cannot carry a slate and stylus or electronic notetaker behind one’s ear. Yet such an excuse is short-sighted since less-than-optimal diabetes control can lead to serious complications, and the slight inconvenience of keeping a Braille or computerized log which can then be typed up or printed for the doctor is slight compared to the burden of diabetic complications resulting from poor diabetic control. It therefore seems prudent to print the following editorial. It is as true for the blind diabetic as it is for the sighted. Here it is:

We’re all scientists. We make observations and try to explain what we see. Sometimes we change things to see if we can make something different happen. Someone with diabetes trying to figure out why blood glucose levels are high, low, or somewhere in between is a scientist. So what observations do you need to make to be a successful blood sugar scientist?

Six very important observations will be 1) your blood glucose monitoring results, 2) the timing and amount of carbohydrates you eat, 3) the timing and amount of physical activity you engage in, 4) the timing and severity of hypoglycemic episodes, 5) the timing and doses of your medications, and 6) information about changes in your health status, including illnesses and medical procedures. All of these factors go into the mix of things that cause your blood glucose to do what it does.

When you meet with your diabetes care provider, you form a team of scientists doing your detective work using the information available. Good scientists know that more information will help them better understand what they’re seeing and how to bring about a desired change. You have the information that’s critical to defining problems and finding answers.

How do you most effectively collect your information and share it with your care team? My answer is simple. While I’m admittedly not a techie, I have not seen a computer software program that can provide the wealth of information contained in a well-kept logbook, whether handwritten or typed into a computer-based format. A number of available formats make recording your observations quick and easy and provide a “week-at-a-glance” summary of your information. Throw in up-to-date knowledge of your other health problems and your current medications, and you’re ready to do some serious problem solving.

If you can find a software program or an app that helps you put all this together, that’s great, but the task doesn’t have to be complicated. (A note about downloading blood glucose meters at office visits: blood glucose values in isolation—without information about meals, activity, medications, hypoglycemic symptoms, etc.—often raise more questions than they answer.)

In the absence of a good diabetes log, the effort required to assemble all this information can take up a big chunk of time during a clinic visit. Instead of spending precious time trying to remember why this blood sugar was high and that one was low, why not sit down for a few minutes each day to record some key pieces of information in your log? That way you can spend more time during your visit working together to make life better. Bring your log, your meter, and your medications to every visit, and let’s dominate the diabetes world!

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