There is No Cookie Cutter Diabetes

In light of Black History Month, I thought it would be nice to feature a volunteer who has been an integral part of shaping the American Diabetes Association’s African American Initiatives. The individual I contacted is a true overachiever for what I was looking for. Meet Maudene Nelson, RD, CDE, who has not only served on many of the Association’s local and national committees and boards for more than 20 years, but is also an expert in the diabetes field and a mother of two grown children with diabetes.

I caught up with Maudene last week, just after she’d conducted an after school program with a group of 13-year-old girls. After only a few minutes of speaking with her, I knew that her energy level and enthusiasm could easily match the energy level of most teenagers I know. Here’s how our conversation went:

First of all, why did you decide to go into the diabetes field?

When I was 11 or 12, I remember watching the movie “The Miracle Worker” and being very struck by Patty Duke’s portrayal of Helen Keller. From then on, I knew that I needed to go into a teaching/helping profession. To me, nutrition seemed to be the perfect marriage of social science (people’s decisions and behavior) with natural science and biochemistry.

Once I became a registered dietitian, I wanted to take it to the next level and while I was part-way through the application process to become a Certified Diabetes Educator (CDE), my oldest daughter who was six at the time was diagnosed with type 1 diabetes. Even though I was a registered dietitian and in the health field, I was still taken aback – the whole family was. This just made my move into the diabetes field more urgent.

And it didn’t stop there. When my second daughter was six, she started exhibiting symptoms of high blood glucose. When I realized what was happening, I grabbed her sister’s blood glucose meter and sure enough, her blood glucose was sky-high. At this point, it didn’t get any harder – but it didn’t get any easier, either. Even though they’re both grown women now, my husband and I still think about them in the middle of the night. Each day, as soon as I get to a computer I log on to Facebook to see if one of them is on chat. Or, I’ll send them a random text – “ 🙂 ” or “just heard your favorite song” – fishing for a reply. It’s just what I do as a mother.

I think many families have a system like that – my sister and I do! So tell me, what is it that you do now and who do you work with?

I have the pleasure of working in a variety of settings. At the Naomi Berrie Diabetes Center I teach nutrition education classes and work mainly with adults with type 2 diabetes. I’ve also been involved in an international research study, TRIGR. My role has been to interview mothers with infants who may have increased genetic risk for developing type 1 diabetes. Hopefully, when the study is completed there will be more information on ways to reduce  that risk.

I also do Community Outreach at Columbia University’s Institute of Human Nutrition where I get to interact with all sorts of communities – from senior citizens to school kids (like the group of 13 year old girls I just spoke with).

What is the most common challenge you see for people with diabetes?

I think the biggest thing is that there is no vacation from diabetes. You simply can’t say “I’m going to the beach this weekend and leaving my diabetes at home.” The chronicity of it wears people down.  With my daughters, I’ve experienced this continuousness first-hand. With type 2 diabetes it may feel like less of a concern, but there’s a need to protect your body parts and functions, even if the result seems subtle. If you have an allergy to shellfish, you avoid eating shellfish because the result is immediate. With all types of diabetes, you may want to overlook the slow, but serious, consequences of poorly managed blood glucose, or worry about them later – but that’s not really much of an option.

What is your advice to people for overcoming that challenge?

I think it’s easier if you have a buddy – someone who understands and who can help share the burden. Additionally, the American Association of Diabetes Educators (AADE) has developed something called the AADE7 Self-Care BehaviorsTM Denotes external link. Please see our Linking Policy and Disclaimer of Link Endorsement.. which include 1. Healthy eating 2. Being active 3. Monitoring 4. Taking medication 5. Problem solving 6. Reducing risks 7. and Healthy coping. I think all of those are great.

It’s all about baby steps – you do as much as you can on a daily basis so you don’t feel overwhelmed all at once. That may sound easier than it actually is, but it’s true for so many things, including the financial side of diabetes. It’s all about getting what you need to live well with the disease and asking for help if you need it. That’s why I volunteer with the American Diabetes Association and do the work that I do – helping people understand the steps they can take to do well with their diabetes.

The CDC recently released information on the latest diabetes statistics, including 79 million Americans with prediabetes. That’s one  in three adults! What is your advice for people with prediabetes?

With prediabetes, you need to learn to bob and bounce. My best recommendation is to do whatever you can so that your feet touch the ground for an hour a day. And when I say “ground” I don’t mean carpet or tile floors, I mean getting outside! If it hurts or you’re strapped for time, do it in little bits, maybe 1 0 minutes here, 20 minutes there. Being active outside covers many of the bases: mental health, insulin sensitivity and calorie burning.

Another thing is that carbohydrate matters – if you have prediabetes, you don’t want to have massive amounts of it. Try remembering portions in terms of your hand. If you’re eying a carbohydrate food (rice, potato, spaghetti) and it’s larger than your fist, it’s too much. Think of it as a dance floor: Although the dance was great and gave you feelings of satisfaction, after that one fist-sized dance, it’s time to find a new dance partner.

The CDC’s information also states that African Americans are 1.8 times as likely to be diagnosed with diabetes as non-Hispanic whites. Why do you think this is the case?

There is still so much research to be done in this area. It’s puzzling. And we are very tempted to put the blame squarely on one factor: it’s the high prevalence of obesity, or it’s assumed to be the traditional dietary choices – but there’s an interplay of many different factors with genes at the center of the puzzle.  It’s important to look at these issues more closely so that we don’t generalize or over simplify. The bottom line of advice may be to stay active and not gain weight, but at least research is still being conducted to see why African Americans are diagnosed more often so we can better learn how to change this.

If you could tell the world one thing about diabetes, what would it be?

That there is no cookie cutter diabetes. My daughter often says, “No one has my diabetes – no one has it from my perspective,” and she’s absolutely right. It’s not the same in every patient, as much as we like to think in terms of type 1, type 2, gestational diabetes, etc. but it’s different for everyone, so we need to focus on treating the disease in whatever way works for you – it’s not easy, but it is a strategy.

After our conversation ended, I had a huge grin on my face. While I’ve found so much support and understanding from other people with diabetes, it IS different for each of us. I will forever appreciate Maudene for sharing her perspective, which in turn gave allowance for my own perspective.

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