Learning leadership in diabetes self-care

Campamento Diabetes Safari, México

Interview with Dr. Stan De Loach by Diabetes Health Magazine

February 2010
 



 
 
 

Dr. Stan De Loach is a bicultural, trilingual Certified Diabetes Educator (one of the first 13 diabetes educators ever certified in Mexico) and clinical psychologist, not to mention a pianist, composer, and writer.  Born and educated in the U.S., he has been a resident of Mexico for decades, and his first love is the annual bilingual diabetes camp for children and adolescents that he co-founded, the four-day Campamento Diabetes Safari.

His journey to the camp began 41 years ago, when he developed type 1 diabetes at the age of 21, an age when many find it especially hard to accept.  He didn’t find it so, however, primarily because the dietary advice at the time was so liberal with carbs that he didn’t have to change his diet at all.  “When you’re told that you should eat large portions of fruit, bread, cereal, and milk,” he says, “it isn’t difficult to adjust because you’ve been eating that way all along.”  It was frustrating, however, because “whatever adaptations you made, there were no apparent or quantifiable results to show for it.  There were no portable blood glucose meters yet.”

Dr. De Loach found his way to stable glycemic control partly on his own, through experience at an expensive upscale buffet in Chicago in the 1980’s.  He recalls, “There was a fancy hotel with an all-you-can-eat Sunday afternoon buffet.  I decided that it would be ridiculous to go there to eat their mashed potatoes or bread because those foods are cheap and I could get them at home.  So I would stuff myself on the crab, shrimp, prime rib, asparagus spears with butter, Caesar salad, and salmon, and then on the walk home I would be hypoglycemic.  And I thought, ‘Something is weird here because I ate like a pig, yet my sugar is low.’  Little by little, it dawned on me that it was the carbs that were causing the high blood sugars, not the proteins or fats or vegetables.  At that point, I began to modify my diet in an attempt at normoglycemia.”

Years later, he discovered Dr. Richard Bernstein’s book The Diabetes Solution, which clarified the influence of carbs in the management of diabetic hyperglycemia “and was specific in terms of quantities.  Dr. Bernstein’s precision, based on learning from his own experience, really changed my life and my blood glucose control.  He is a guide, a thinker who can provoke you to think and to learn, who uses real data and research rather than just theory or what experts who often may not have diabetes are saying.  He presents his reasoning, and then you analyze it yourself.  Just because a professional organization says to eat 50-60% of your diet in carbs doesn’t mean that it’s valid.  Eat that way and check blood glucose levels; then eat Dr. Bernstein’s way and check.  You have your measurements to go by, so you can know the ‘real’ results in your unique body.  The positive difference is convincing.

“Explain to me,” Dr. De Loach asks, “how a balanced diet can consist of 50-60% carbs, 20% protein, and 20% fat.  How is that ‘balanced’?  With these proportions, the commonly promoted balanced diet is really not balanced at all.  A Spanish colleague argues that what we want to promote in diabetes care is an unbalanced diet in order to produce glycemic balance.”  “No one dies of diabetes,” notes Dr. De Loach.  “We die of chronic diabetic hyperglycemia and its effects, the diabetic complications, which can be disabling and fatal.  Manage hyperglycemia, not diabetes.  Hyperglycemia is manageable; it’s what you can effectively ‘control.’”

That Dr. Bernstein’s ideas are controversial “is totally perplexing,” says Dr. De Loach, “because, as I tell my clients, with any treatment that you are prescribed, how are you going to measure its success or suitability?  In the case of type 1 diabetes, you can gauge it by your blood sugars.  If you’re heading toward 200 mg/dL, you can then decide whether the specified insulin doses, the food regimen, the activity level are providing effective treatment?  Dr. Bernstein may be controversial in some quarters, but rarely among those who have tried his methods.  Many people, however, are unwilling to try them.”

Dr. De Loach believes that one deterrent to trying low-carb methods of glycemic control lies in the lack of scrutiny given to statements and assertions from prestigious professional organizations.  You see these declarations, ‘Oh, a high percentage of carbs is good, even necessary, for a person with diabetes.’  There’s no proven basis for believing that’s true, but when you hear the message repeatedly, to change or do something different is going to cause anxiety because you think ‘I’m doing the wrong thing, and I’m going to kill myself by not eating so many carbs.’  That’s when the trusty blood glucose monitor can restore reason and orientation.”

Dr. De Loach is a convincing proponent of not relying on conventional wisdom when it comes to your own diabetes management.  “If people who have diabetes think of themselves as passive recipients of infallible medical wisdom, sometimes imparted by professionals who do not even have diabetes, they’re not going to get optimal care.  I can’t tell anyone exactly how much insulin they need, for example.  But you, by experience and measurement of your blood sugars, can learn that.  To be passive in your health-care relationship is just not to your advantage.  Basically, the responsibility lies with the person affected by diabetes to learn to handle multiple decisions, during every 24-hour day.

"If a client with diabetes goes blind, how will that affect me?  Maybe emotionally, but it’s going to affect that person quite a lot, physically, economically, and emotionally.  The person who has the authority and responsibility for managing diabetic hyperglycemia is the person who has it.”

“Glycemic control for the person with diabetes is complicated by the medicine that we all use daily in multiple doses and in great quantity: food.  It is a medicine that requires more medicine (insulin) and that no one can dose except the individual with diabetes.  It has emotional significance that other over-the-counter medicines do not have, and it exerts rapid and powerful physiological effects.  Eating 200 grams of carbohydrate quickly affects blood glucose, so it’s a potent medicine with psychological and social meanings.  Food certainly complicates the life of any person with diabetes.”

The conviction that each individual holds the authority and responsibility for managing glycemic levels guides the way Campamento Diabetes Safari is organized. “Who is capable of managing hyperglycemia?  It’s really the Campers, to whom we say the first day, ‘You’re not slaves here.  It’s not a question of obedience, because you’re young and we’re older.  You have diabetes.  Who’s going to be in charge of managing your blood sugar for the rest of your life?  It’s you!  It would be nice if daddy could do it, it’d be nice if I could, but we can’t.  You can, however.  What you choose to learn here may help in your efforts.’”

“They promptly comprehend this message, which is followed by the disclosure that there is no battle, no external force involved.  We don’t tell them to check their blood sugar.  We don’t order them to ‘not eat that.’  Studies show that when young persons with diabetes, or adults for that matter, have free access to the tools they need to manage their blood glucose, they generally choose to do so.  The Campers have their own meter and unlimited strips, thanks to Abbott Laboratories de México.  They carry and use them at their discretion.

“Guidelines often recommend checking blood sugars four times a day if you’re using insulin.  We don’t recommend four or 12 times a day.  It’s whatever you judge prudent, the parameter suggested being that you do it whenever you don’t know.  If you know your blood sugar level, fine, you’ll know what to do.  If you don’t know, it could be worthwhile checking.”  Campers typically check blood sugars an average of 11 times per day.  The results of this self-directed learning process are impressive.  An article describing the Campers’ glycemic levels1 indicated that the mean blood glucose value was 209 mg/dl on arrival at the camp and 87 mg/dl on departure.  A normal blood glucose value lies between 71 and 99 mg/dl.

“Campers also determine for themselves how much ultrarrapid insulin analogue to take before meals.  Staff collaborates with them in articulating relevant learning from previous experiences with bolus insulin doses.  The meals are all buffets, from which Campers choose whatever they like.  They are remarkably competent at calculating the dose of insulin needed to match their appetite.  They also choose to exercise or not, often related to their immediate glycemic goals.”

“We wisely keep the educational focus on glycemic goals.  If the Campers cannot learn to manage hyperglycemia in a diabetes camp where we have professionals with tons of experience and knowledge, how will they learn at home, where that expertise may be unavailable?  If they choose to learn through the ready consultation and shared interpretation of experience offered at camp, they could be expected to engineer normal blood sugars most of the time, if they wish.  So theoretically, glycemic values could be normalized more easily at camp than at home.  Sixty percent of Diabetes Safari’s staff members have type 1 diabetes.  They are expected to maintain an A1c of less than 5.2%.  By doing so, they demonstrate, model, and confirm the feasibility of normal glucose values, at camp as well as at home.”

Dr. Elliot Joslin's timeless and invaluable belief of 85 years ago, that education is not part of the treatment of diabetes, but rather is the treatment itself, influences Campamento Diabetes Safari, which is designed to be educational, not recreational.  “Campers do go swimming, play, and recreate, but all is turned to opportunities for learning about what daily decisions and behaviors can mean in terms of glycemic management and goals.  Because education for type 1 diabetes has to be individualized, you can’t give classes or just general information.

For that reason, the question of the individual’s authority and responsibility is also brought into the matter of diabetologic education.  In some diabetes camps, there is a cabin master or mistress who controls the number of strips, the test times, the meters, and the food intake, so the Campers are not really in charge of or responsible for the management of their own glycemia.  But at Diabetes Safari, it’s all on the Camper, who sets the curriculum and asks for the support and consultation necessary for his or her self-directed learning.”

As a clinical psychologist, Dr. De Loach brings expertise in system dynamics to the camp’s design.  “We try to focus on the whole system, because all parts of a system interact and their interactions increase or reduce the system's effectiveness.  The entire staff and all Campers meet twice a day in what are called plenary sessions, each lasting about an hour.  There is no assigned topic.  You can say whatever you want to say or nothing at all, about anything going on in yourself or in the temporary social system that is the Campamento.  The meetings are opportunities for Campers to speak their mind, in a setting where it’s permitted and respected but not forced.  Their inner strengths, weaknesses, and resources find voice at the plenary meetings, joining the parts of the sytem together and focusing us on the beauty and pain of here-and-now reality.”

The staff is available around-the-clock to accompany Campers in their pursuit of whatever they need and wish to learn.  Whether or not to implement the ideas or strategies that result from consulting with staff always remains the Camper’s decision and responsibility.  Dr. De Loach emphasizes the importance of the public nature of staff’s self-care behaviors.  “Those of us with diabetes check our blood sugars and take insulins in public.  The Campers observe our meter readings.  When they see staff who do not have type 1 diabetes check their postprandial blood sugar, they think, ‘Okay, these bigwigs have been saying that a normal blood glucose is 71 to 99 mg/dl, and this endocrinologist without diabetes just got through eating and has 84 mg/dl, so maybe that really is a normal blood sugar.’  They learn from the public nature of staff's and their own behaviors.”

Dr. De Loach does not use a pump or continuous glucose monitor, because he is satisfied with results using injections of ultrarrapid and basal insulin analogues.  “I ask myself the same question that I ask my clients.  How can you tell if the treatment that you’re using works or is good enough?  The answer in my book is that if your blood glucose is between 71 and 99 mg/dl most or all of the time (that is, an A1c of 5% or less), then that’s effective treatment.  If not, I would consider adjusting or modifying treatment.

"I haven't felt the need to use a pump to normalize my blood glucose levels.  In my experience, if you can’t get your blood sugar stable in a near-normal range with injections of insulins, you can’t do it with a pump either.  It’s not a matter of how you’re getting that insulin into you; it’s knowing how much and what kind and at what time, and, of course, your food intake and activity level.   Some Campers are distressed when I say that glycemic management is an adventure in applied mathematics, but I think it is true.”

The clinical psychologist in Dr. De Loach comes to the fore when he discusses the feelings of depression that persons with diabetes may experience when they find themselves unable to manage their blood sugar levels, in spite of effort.  He relates the painful feelings to others’ (parents’, health care professionals’) and their own easy acceptance of harmful hyperglycemia simply because after all one has type 1 diabetes and so it’s expected or “natural.”  “It’s as if a person with diabetes had no right to have or expect to have a ‘normal’ blood glucose level,” he says.  “Usually, the first treatment experience for a person with type 1 diabetes is of failure.  Because you will be told to do thus and so, and you will do it, and you will still have hyperglycemia or hypoglycemia most or all of the time.  That experience of failure has to be modified by the realization that you can actually manage it.  It is not rocket science, as Dr. Bernstein says, and you can learn how to do it.

“Another source of pain for young people with type 1 diabetes is the anguish that comes from the passage of time after diagnosis, without knowing and without learning.  Parents and healthcare professionals are not always aware of the anguish that children and adolescents feel when they experience abnormal blood sugars.  They feel profound anguish because they know that chronic hyperglycemia is not normal or without negative consequence for them somewhere down the road.  But they may feel impotent or be uncertain of how to alter the cause of their anxiety and dread.

"At camp, young people can learn strategies that allow successful blood glucose management, which can alleviate the anguish and depression.  They learn through experience by making food choices, figuring out insulin doses, having the courage to share and subject to validation their reasoned convictions, and monitoring the glycemic results.  Their exercise of authority and responsibility is the only real antidote to the anguish and depression.  In the published study mentioned previously, the Campers’ average 3-day blood glucose was 95 mg/dl.  That’s pretty darn normal.  Staff didn’t prescribe their insulin doses or decide what they ate.  The Campers did.  They made their choices, and the results are theirs.”

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Reference
1 Campamento Diabetes Safari 2006:  Methods for achieving stable normoglycemia during an educational camp for youth with type 1 diabetes mellitus.

 
 


NOTA: Campamento Diabetes Safari is a nonprofit venture that charges only $230 (in 2011) per camper because it is supported by private donations and corporate contributions of supplies.  To contribute or for registration details, see www.diabetes-safari.com.
For additional information on Campamento Diabetes Safari, see the 2008 article from the website of Diabetes Health magazine, “You Can’t Push the River."
Related YouTube webpage regarding food choices for persons with diabetes:  Big Fat Lies  (2 minutes and 35 seconds)
A version of this interview was published online in Diabetes Health magazine, April 2010.  See Developing Youngsters' Power in Diabetes Self-care

 

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