What is the everyday reality of living with diabetes? It can be complex, personal and sometimes even misunderstood by others. The 2018 theme for American Diabetes Month is “Everyday Reality” and explores the 24/7 truth of diabetes self-management from the point of view of those with diabetes or those caring for someone with the disease. My reality was a surprising diagnosis of Type 1 diabetes in my mid 30’s. At the time, my diagnosis and the way it would impact my life was overwhelming. The personalized guidance and education that I received from my diabetes educator, Cecilia, made the difference in my confidence in learning to live and manage this disease. Unfortunately, not everyone has the support they need to successfully learn how to live with diabetes. This prompted my desire to create Fit4D, a diabetes coaching service utilizing technology to scale the ability of certified diabetes educators (CDEs) who are diabetes expert clinicians to connect with those that need support the most.
In celebrating Diabetes Awareness Day, November 14th, here are five things you should know about the realities of managing diabetes.
1. Reasons for Poorly Controlled Diabetes Are Complex
Diabetes is a chronic disease impacting an estimated 30.3 million Americans. By 2050 it is projected that 1 in 3 adults will be diagnosed with diabetes. At the moment there is no cure. It is a disease that demands frequent decisions about food, physical activity, medications and reacting to blood glucose trends. It has been estimated that a person with diabetes is making on average around 300 decisions daily about their disease management. That’s 300 decisions that are diabetes focused in addition to all the other daily decision-making. Supporting an individual in developing strategies to better manage diabetes and the decision-making process needs to be personalized, everyone’s life is very different. The diagnosis may be the same but barriers to care including financial, psychosocial and even health literacy differ. A one-size fits all model to education cannot adequately address all these personal differences. That’s why Fit4D’s technology platform focuses on scaling the human touch. The model allows for personalization in the process of education, each person with diabetes works with the same CDE throughout the program. This creates a relationship that makes identifying adherence barriers that are affecting the success of diabetes management easier.
2. The Majority of Individuals with Diabetes Have Not Had Any Type of Formal Training/Education
Numerous studies have demonstrated the benefit of diabetes self-management education (DSME), including improved clinical and quality of life outcomes as well as reducing hospital admission and readmission. The problem? Many individuals with diabetes do not receive any formal education. Less than 7% of those with private insurance and only five percent of Medicare beneficiaries used their DSME benefit within the first year after their diabetes diagnosis. Traditional models of education often lack the convenience, accessibility and flexibility that many individuals with diabetes need. To help mitigate some of the challenges with traditional models of education, Fit4D’s technology platform allow CDE coaches to connect with individuals using their preferred modality (phone, email, text, etc.) during time-frames that work for them. This naturally complements existing care management programs and enhances the ability to receive ongoing care and support.
3. Fifty percent of Individuals with Chronic Diseases Don’t Take Medication as Prescribed 
Medication management can be a very important aspect of diabetes management. Yet, it is estimated that about 50 percent of those living with a chronic illness do not take their medication as prescribed. The reasons contributing to this lack of adherence are complex and can be attributed to challenges related to the patient, healthcare providers and healthcare system. Complex barriers require the personal touch of a CDE who can work with individuals on the modifiable barriers to medication adherence such as improving health literacy and addressing challenges related to cost of medications.
4. Diabetes is Expensive to Manage
The burden of the cost of diabetes management impacts not only the individual but also the healthcare industry. According to the American Diabetes Association the total cost of diagnosed diabetes in the U.S. was $327 billion— of that number, $237 billion in direct medical costs and $90 billion from reduced productivity.  People with diabetes spend an average of $16,750 on medical expenses and about $9,600 is linked to diabetes.8 The driver of reducing costs for the individual and healthcare industry is proactively reaching out, driving engagement and providing personalized guidance to address barriers to care.
5. There is Hope. Diabetes Education is Effective.
There is hope, diabetes education has proven to be effective. According to the American Association of Diabetes Educators, “research demonstrates that individuals who receive diabetes education are more likely to use primary care and preventative services; take medications as prescribed; control blood glucose, blood pressure, and cholesterol; and have overall lower healthcare costs”. Increasing accessibility to diabetes educators; improving adherence to care plans and helping individuals develop strategies to live well with diabetes 24/7 are all goals of Fit4D.
David Weingard, CEO and Founder of Fit4D
The everyday reality of living with diabetes reaches far beyond the month of November for those living with the disease. Outcomes of poorly managed diabetes can be grim. Improved reach and accessibility to education using technology as a tool will continue to evolve. Tapping into the power of human connections however can provide the empathy that individuals with diabetes need to persevere in the success of managing their disease. We should continue to support diabetes education and diabetes educators as the helping hands guiding a patient-centered care approach.
 Centers for Disease Control and Prevention. National Diabetes Statistics Report, 2017. Atlanta, GA: Centers for Disease Control and Prevention, US Department of Health and Human Services; 2017.
 Boyle, J. P., Thompson, T. J., Gregg, E. W., Barker, L. E., & Williamson, D. F. (2010). Projection of the year 2050 burden of diabetes in the US adult population: dynamic modeling of incidence, mortality, and prediabetes prevalence. Population health metrics, 8, 29. doi:10.1186/1478-7954-8-29
 The Diabetes Epidemic: The Latest on Treatment and Prevention. Nov 14, 2017. https://www.youtube.com/watch?v=ST45EcJ82a0
 Healthy People 2020. Washington, DC: U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion. October 2018. Available from:https://www.healthypeople.gov/2020/topics-objectives/topic/diabetes
 Li R, Shrestha SS, Lipman R, Burrows NR, Kolb LE, Rutledge S.; Centers for Disease Control and Prevention. Diabetes self-management education and training among privately insured persons with newly diagnosed diabetes—United States, 2011–2012. MMWR Morb Mortal Wkly Rep 2014;63:1045–1049
 Strawbridge LM, Lloyd JT, Meadow A, Riley GF, Howell BL. Use of Medicare’s diabetes self-management training benefit. Health Educ Behav 2015;42:530–538
 Brown, M, Bussel J. Medication adherence: WHO cares? Mayo Clin Proc. 2011;86 (4):304-314
November is Diabetes Awareness Month, for ANY person with ANY Type of diabetes. One thing is for sure, all those types need help for their malfunctioning pancreases.
While we are all in this to fight diabetes on a larger scale, globally and locally, it is often not made clear to those loved ones and friends of people with diabetes exactly how many ways there are that they can help drive awareness and raise funds and support to help find a cure, or in the meantime, to find the best technology possible to manage this daunting invisible disease. Living with T1D for 28 years myself, I can say that at this point, even those that have known me for decades, often forget that I constantly carry around the shadow of decision making before I get up, eat, go out, or do anything really, that that one extra step takes up so much energy. The blood sugar fluctuations of this disease can manifest itself in different ways for different people. No day is the same, so having a consistent support system is a necessity when dealing with this disease.
Here are five ways that you can do something this month to help bring awareness to this disease and to drive advocacy.
Reach out to your local JDRF or ADA Chapter. If you have time, donate it! That is the best thing you can do. If you don’t have time to physically go to an office, a meeting or an event, try to get involved in JDRF or ADA through social media and other online support groups.
If you have T1D, a great way to offer help is to become a part of the T1D Exchange community. Also, Trial Net offers T1D risk screening for family members of those with T1D.
Form a Walk team for JDRF or for ADA’s STOP Diabetes walk. It usually only comes around one time of year, but there is definitely a walk near you! For example, all the JDRF walks just happened this past fall. This gives you an ENTIRE year to form a team, come up with an awesome name, and fundraise!
Help Someone with Diabetes by just listening. Asking them how they feel in a no-judgement zone feels like such a weight lifted off our shoulders. It’s difficult to complain a lot when you know there are others in the world who are far worse off, but you still need to vent, it’s healthy. If you are reading this and you are the support person of someone you love with diabetes, help them by offering to watch their children so they can volunteer or attend an important advocacy opportunity at their local State House.
Subscribe to diabetes related social media sites. There is an enormous amount of information on the web, some opinion based and some very scientific and matter-of-fact. For recommendations, check JDRF or ADA for suggestions and start there, so that you know they are credible sources. Also, connect with Fit4D's Diabetes Innovation group on Linkedin. This group has 7,000+ members from the entire healthcare space. One thing is for sure, you can learn SO much about what is going on in the world of diabetes. Things are changing very fast, and in a very good way. Technology is moving at speed faster than we can raise enough money for. Our cure is so close I can taste it. It’s because of awareness and fundraising that I will see a cure in my life. Something I never believed in 28 years ago.
We can do everything we can to be the best version of our diabetic-selves, but at the end of the day, it’s okay to tell those around you that you are extra tired or extra worn down from a really rough day of highs and lows. We don’t always show it, but we need to make sure our support systems know it. This is why I am so excited to have just joined Fit4D, whose mission is to improve the lives of people living with diabetes by providing a personalized approach that drives behavior change via technology and close interaction with a CDE (Certified Diabetes Educator) and is scalable to reach so many of us who need that extra shoulder to lean on.
A CDE is really the guru of everything diabetes, but not only that, they are some of the most empathetic and compassionate people I know. Fit4D offers a service that is there to not only help patients on their journey of disease adherence and medication compliance, they are sometimes life savers. Out of the millions and millions of people with diabetes, I can’t imagine that every single one of them has someone to keep them on track and to encourage and empower them to know they CAN take charge of this disease and live a healthy life. This is what the Fit4D program does, by partnering with Health Plans and Pharmaceutical/Device companies. We go that extra mile in case you can’t get there on your own.
Regina Shirley, Fit4D Account Director and Diabetes Expert
Regina Shirley has worked for fortune 500 companies such as Lilly, Medtronic, and Nestle Nutrition as well as in software sales in the life sciences industry. Through her passion and extensive knowledge, she has been able to promote growth and adoption of new services for her customers. She has a very successful track record of leveraging relationships with key players in the diabetes field and the diabetes community.
On the personal side she has lived with T1D for over 28 years and has always participated in various JDRF events including: National Speaker’s Bureau, T1D Nation Summit key note address, Fund-A-Cure Gala Speaker, and as an Outreach Committee member of the Baystate Chapter in Boston. She also contributed to such important educational content as the JDRF Pregnancy Toolkit and the Diabetes Education and Camping Associations’ nutrition guidelines manual. She guest lecturers annually on the topic of ‘Diabetes, Technology and Nutrition’ at Framingham State College. She has also been a Registered Dietitian for over a decade. She has been the creator of a widely viewed diabetes blog called ServingUpDiabetes and has guest blogged for some of the top diabetes resources.
The ketogenic diet is all over the media lately and I find myself having a conversation about it with a patient at least once per day. Where did this popular diet come from and what does it mean for people with diabetes?
A ketogenic diet is very low in carbohydrate, very high in fat, and has moderate amounts of protein (see table below). Typically, the body turns carbohydrates into glucose, or sugar, which gets stored as energy in muscles and liver. When the body is deprived of carbohydrates and all of the stores have been used up, the body starts using fat for energy. This process creates byproducts called ketone bodies which can be used to feed the brain when there is not enough glucose available. When someone is producing significant levels of ketone bodies, they are said to be in ketosis and that’s how the ketogenic diet got its name.
The ketogenic diet was first developed in the 1920s to help children with epilepsy, a seizure disorder.(1) Researchers found that when the brain used ketone bodies for energy instead of glucose, children had fewer seizures. With the discovery of new medications for epilepsy, the ketogenic diet became less popular by the 1940s. However, following a news story in 1994 about a child whose epilepsy improved from a ketogenic diet, researchers began studying the diet again and not just for epilepsy. Since then, it has continued to grow in popularity.
People with diabetes might notice that the words ‘ketosis’ and ‘ketogenic’ sound very similar to a scary word, ‘ketoacidosis’. Ketoacidosis is a deadly condition where the body doesn’t have enough insulin to process glucose. In this situation, the body produces very high levels of ketone bodies so quickly that the blood becomes acidic. A ketogenic diet is not likely to increase ketone bodies to a high enough level to cause ketoacidosis; however, people with diabetes should always speak with their health care providers before starting a new diet.
Ketogenic diets have been studied in people with diabetes. Based on this research, the American Diabetes Association acknowledges these diets in the 2018 Standards of Care. “While some studies have shown modest benefits of very low–carbohydrate or ketogenic diets (less than 50-g carbohydrate per day), this approach may only be appropriate for short-term implementation (up to 3–4 months) if desired by the patient, as there is little long-term research citing benefits or harm.”(2)
That brings up a big challenge with the ketogenic diet: we don’t have long-term research so we don’t know if this is a diet that somebody can safely follow for the rest of their life. In the short-term, it might be helpful for someone trying to improve their A1C or lose weight, but in the long-term, there could be negative effects. Some known risks of a ketogenic diet include dehydration, gout, kidney stones, osteoporosis, and nutrient deficiencies. (3) For this reason, it’s important to work closely with a Registered Dietitian if you decide to test out a ketogenic diet. They can help you to weigh the risks and benefits of a ketogenic diet and support you in following one successfully.
Table: Comparison of a regular diet to a ketogenic diet for a person eating 1800 calories daily.
By David Weingard, Husband, Father, Person With Type 1 Diabetes And Founder/CEO Of Fit4D
David and his wife Andrea before they raced Casco-Bay Swin Run
Thursday Aug 9, 2018
It is 3 days before my wife Andrea and I race the Casco-Bay Swim Run… swimming and running across state of Maine islands across rocks, up/down paths, in/out of the 60 degree water for an expected 5+ hours. We will be wearing special wet suits, wearing hand paddles, strapping pull buoys to our body etc. It is a point to point race, so we swim/run in our sneakers and on top of all of this are tethered together by a rope testing our athletic prowess and also the strength of our marriage :)
Five years ago, on another milestone birthday, I asked Andrea to run across the Grand Canyon together and we had an amazing time, now this new adventure.
I feel excited though very concerned at same time. I know we have the running and swimming training down…. Though this sport is new to us and in our last ocean practice we got tossed all around in the waves, I lost my goggles and all my diabetes supplies got soaked (in their waterproof bags). I doubt anyone with Type 1 diabetes has done this race due to the complexity of pulling it off with diabetes. If my blood sugar goes too low, I can pass out. Too high and I am slow and groggy. And all my diabetes supplies need to be with me from beginning to end, through all the swims and runs.
My plan calls for detaching from my insulin pump and switching to multiple short acting insulin injections. Short acting insulin lasts in body between 2-3 hours. My specific plan is below* for those interested in the detail.
During the race, I need to test my blood glucose levels several times and then eat/take insulin to carry a “basal” level of insulin in my body. I would be a lot calmer if, in practice, the “waterproof” iPhone cases didn’t leak water and ruin the pen and testing strips. I developed my first backup plan idea last week and emailed the race director a few times to see if I could leave the diabetes supplies with people who would be at aid stations. No response. Rule #1 in these races and in life with diabetes. Be self-sufficient, expect the worst and no support. I have a new backup plan of a waterproof bag wrapped around my waist while I swim. It arrives today via Amazon.
Friday Aug 10, 2018
Three good things happen regarding diabetes and the race today.
The race director emails me and agrees to keep one of my backup waterproof diabetes supply bags at the mile 4 aid station. This happens to be very helpful as the “water proof” bag that I swim with around my waist gets filled with water on race day.
After brainstorming with my wife Andrea and explaining how I always need to have insulin in my body to function/live… it leads me to decide to inject 2 units of long acting insulin into my body the morning of the race. Way less than my 9 units per day, it gives me confidence that should all else fail during the race with the short acting insulin… I will always have some in my body.
Andrea also points out that if I carried an unopened vial of insulin, it should remain waterproof. I put an unopened vial, along with some syringes into 1 of our “waterproof pouches.”
Sunday Aug 12, 2018
The Cole Classic Swim race course includes 7 ocean swim segments totaling ~3.5 miles mixed with 7 running segments totaling ~12 miles on trails and every other kind of terrain. One running segment of 0.5 miles was actually climbing across boulders before jumping yet again into the 62 degree water. And, as I mentioned earlier, Andrea and I were tethered together for all the swims.
We learned that the Cole Classic was founded in 2014 replicating a Swedish race. There are only two of these swim-run races in the USA and the roughly 400 participants came from across the USA (and the world). The founder Jeff Cole passed away earlier in 2018. Lars (his race management partner) and Jeff’s family and friends made heartwarming tributes and celebrated life’s memories of Jeff at the pre-race briefing.
In this race, one can’t expect everything to turn out exactly like on the web site. The race director, Lars, made course modifications based on nature through the race weekend (in our case, everything was or seemed longer)
Marriage takes kindness, patience, fortitude to thrive. For some people this complex combination of behaviors comes easier than others. I am fortunate to be blessed with a wife, that together we share so many great/positive moments though like everyone else we have our challenging times too. I am also fortunate that my wife, Andrea, shares my passion for triathlon and other sports adventures. She is actually faster and better than me in all of them.
Swimming straight in the open water (also called sighting) is critical to pacing the body’s energy and of course leads to the best race times. Compound sighting with the changing tide, swimming through packs of seaweed (yes really) and getting to the end point that you want without wasting too much energy is an “interesting” experience for most of the racers (except ex-college swimmers).
Andrea, being the stronger swimmer, led and had to sight in the open water swims. This was where the race became a learning experience for me especially given that my race partner was my wife. What I intended to say in the moment during 1 of the more “tide heavy” swims where our destination seemed to vear right/left continually and remain distant for way too long.. wont’ be mentioned here.
Instead phrases like “Hey buddy, swim toward the white house please” somehow came out of my mouth. We had to focus on the goal and not get caught up in any side distracting emotions. This didn’t work so well when we were running, and she was complaining about chafing from her wet suit and I recited my mantra “stay focused on the goal.” Empathy would have had a better result than the frostiness I received. Thankfully a kind word and joke later, we were back on track.
My buddy, Andrea also helped me with my diabetes as all my backup plans were in play. At miles 4 and 8, Andrea helped me get out my blood glucose meter, test strips, insulin pen and needle. Unfortunately, the constant rain didn’t enable me to test my blood sugar without a dry finger or to get working test strips. I actually went through the entire race without knowing my blood sugar (I highly don’t recommend this to anyone). I took my insulin and food per my plan and finished the race with a blood sugar level of 125 which is excellent. All those with type 1 diabetes, and their families, reading this know that the odds of having a perfect blood sugar after 5+ hours of exercise, insulin and food have odds of 1 in 1000.
I can’t recommend enough the value and benefit of having a diabetes plan and pre-race simulations. Even though parts of my plan didn’t work, enough did. Someone above was looking after me on race day in addition to my buddy. We made all the time cutoffs and somehow finished with a smile on our faces and holding hands (and still in the rain). See picture below.
I am truly grateful to have competed this race, now eighteen years after being diagnosed with my own diabetes. To my life partner, race buddy and diabetes supporter… Andrea… thank you and I love you.
*David’s diabetes plan. Goal optimal BG, no lows and run mildly high as precaution.
4 AM: Wakeup
4 AM: Disconnect from pump, bolus 3.2 units of short acting insulin to cover an electrolyte drink mixed with carb pro and basal that would have received. Food is 40 GM and 200 calories.
4 AM: (added) take 0.2 long acting insulin
4.45 AM: Go on boat to starting line on an island somewhere in Maine
5.45-6.15 AM: Test blood sugar (BG). I should have missed 0.8 units of basal insulin being disconnected from pump. Hopefully my BG is normal. Take injection of 1 unit of short acting insulin and eat 1 GU energy gel
6.30 AM: Race starts
7 AM: Reality, the race start gets changed to 7 AM that morning and my pre -race blood sugar is 265 at 630 AM. I take 2 units of short acting insulin and ear 1 Gel with 22 GM of carbs.
8.10 AM: This should be around 4 miles in of running and swimming. (yes, it all takes longer than normal on rocky roads with all the stuff and open water). Test BG and if normal, take another 1 unit of insulin and eat another 1 GU energy gel. If low, add bag of sports jelly beans
9.50 AM: This should be around mile 8 after the 3rd swim. Test BG and if normal, take another 1 unit of insulin and eat another 1 GU energy gel. If low, add bag of sports jelly beans
~12 PM: Finish. Hopefully with Andrea and I smiling and high-fiving. Should be out of insulin in body. Take large injection ASAP to cover the lapse in body and eat and SMILE
David and Andrea after completing Casco-Bay Swin Run
I was talking to a family member about nutrition when she expressed an opinion that I hear all the time: “Everyone is following such different diets! It’s just so confusing that I don’t know what to eat anymore!” And isn’t that true! Everyone holds such strong food opinions, and talks with such conviction, that it feels like politics!
This is when I recommend the Food Kumbaya Moment: that place where people who hold very strong positions work to find common ground and come together in unison. That’s professionals AND patients. We can all agree on a few basic nutrition tenants.
There is a reason we need to work together. And that is because the nutrition community has been unable to identify the one ideal meal pattern. Experts have been trying for years to identify the “best” diet that is most effective at helping people lose weight, or achieve cardiovascular health, or treat diabetes. We can’t find that one perfect diet and that may be because there isn’t one perfect diet for everyone.
As diabetes professionals and advocates for healthy eating, we rely on evidence based information. The 2018 Standards of Medical Care in Diabetes by the American Diabetes Association has a lot to say on the subject of nutrition. “A variety of eating patterns are acceptable for the management of type 2 diabetes and pre diabetes including Mediterranean, DASH and plant-based diets (1)” This theme is reiterated in the Academy of Nutrition and Dietetics Nutrition Practice Guideline for Type 1 and Type 2 Diabetes in Adults. It was concluded that research does not support an ideal percentage of energy from carbohydrate, protein or fat in the eating plan for people with type 1 or type 2 diabetes (2).
The most important aspects of meal planning are to find an approach that a person is willing and able to follow, and to achieve an appropriate energy intake. As diabetes educators, advocates for good health and counselors for behavior change, we need to employ motivational interviewing to learn the interests, preferences and preconceived notions of our clients, then work toward helping them create the best plan for them personally.
So, if we aren’t going to debate low carb Vs. low fat, paleo Vs. plant based, we can focus on the common nutrition tenants of all these plans. First, everyone needs to eat more vegetables. The federal government collects nationwide food consumption data, and to put it mildly, American’s are not doing well in the category of eating our vegetables. A whopping 87% of Americans did not meet the minimum recommendation for their sex-age group (average of 2 cups) of vegetables daily (3). We certainly can all agree on this goal. A concerted effort on the part of nutrition professionals to guide and encourage vegetable consumption would have many positive outcomes.
Our second priority, that all diet plans endorse, is the need to reduce the consumption of processed food products. This can be further defined as eating fewer refined sugars and refined grains, and limiting sodium intake.
If we can start with these basic nutrition tenants, of more veggies and less processed food products, we are surely moving in a positive direction. This should keep us all pretty busy for a while. Kumbaya!
Diabetes Care, Jan 2018; Volume 41, Supplement 1, Standards of Medical Care in Diabetes 2018.
J Academy of Nutrition and Dietetics, Oct 2017, Volume 117, Issue 10, p 1637-1658. J. MacLeod et al, Academy of Nutrition and Dietetics Nutrition Practice Guideline for Type 1 and Type 2 Diabetes in Adults.