Learning leadership in diabetes
self-care: Campamento Diabetes Safari, México
Interview
with Dr. Stan De Loach by Diabetes
Health (febrero 2010)
Dr. Stan De Loach is a bicultural,
trilingual Diabetes Educator, one of the first 13 diabetes educators
certified in Mexico, and clinical psychologist, not to mention a
pianist, music composer, abstract painter, and writer.
Born and educated in the U.S. and México, he has been a resident of
Mexico for decades, and his first love is the annual bilingual
diabetes camp for children and adolescents living with type 1
diabetes mellitus that he co-founded, the three- or four-day
Campamento
Diabetes Safari.
His journey to the camp began in 1969, 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 Miracle Mile 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 make them at home.
"So I would stuff myself on the crab, shrimp, prime rib, asparagus
spears with butter, Caesar salad, and smoked 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 green
vegetables. At that point, I began to modify my diet in an
attempt at something closer to 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 any
form of 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 of mine,
Dr.
Rosa Elena Yáñez, 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.' Diabetes
is incurable.”
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 'normal' person and therefore for a
person with diabetes.’ There’s no proven basis for believing
that’s true. After all, in the caves our ancestors did not
have corn flakes for breakfast.
"But when you hear a 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 enough 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 themselves 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 any person living with diabetes mellitus, type 1,
can learn that, from personal experience and frequent measurement of
blood sugar levels.
"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 person 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.
"Food is a medicine that requires more medicine (insulin or oral
hypoglycemic drugs) 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. It's your choice.’”
“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 what it is.
"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.
A published
article
describing the Campers’ glycemic levels
1 reported 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
gained through years of experience in managing their glycemic
levels, 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 available 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% in order to participate in Campamento Diabetes Safari. 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 almost 100
years ago, that education
is not part of the treatment of
diabetes, but rather that it
is the treatment itself,
influences our work, which is designed to be educational, not
recreational.
“Campers do go swimming, play, and recreate, but all is turned to
opportunity 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 vague, 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 mistress
or cabin master 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 Campamento 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 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 system 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. “All the staff,
including those of us with diabetes, check our blood sugars and if
needed, take our insulin doses in public. The Campers
observe our meter readings.
"When they see staff members 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
non-diabetic blood sugar.’ They learn from the public nature
of staff's and their own behaviors.”
Dr. De Loach does not use an insulin pump or continuous glucose
monitor (Update: Abbott Laboratories' FreeStyle Libre 2
works well up to 85% of the time and Dr. De Loach does currently
use this continuous glucose monitor with alarms, day and night),
because he is satisfied with results using injections of Regular
insulin and 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? In my book, the answer 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 or
finding a health care provider who is willing to help you learn to
have normal blood sugars.
"I haven't felt the need to use an insulin pump to normalize my
blood glucose levels. In my experience, if you can’t get your
blood sugar stable in a normal or near-normal range with injections
of insulins, you in all likelihood 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 even great 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 utter
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. Richard K. Bernstein often says,
and you can learn how to do it. And you certainly can achieve
your normoglycemic goals.
“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
(and adults, often) feel when they experience
abnormally elevated blood sugars.
"The young 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, depression,
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 public validation their reasoned convictions, and
monitoring the glycemic results of their decisions.
"Their exercise of personal authority and responsibility is the only
real antidote to the anguish and depression and to the dependence on
others that the
medical
system often promotes.