Whenever I learn something new (diabetes-related), I like to share it here. Because I figure if I hadn’t heard about it — as I’m sniffing the air for D-news over the years — then lots of other PWDs out there probably haven’t heard about it yet either.
Today’s tidbit is about that famous diabetes activist Dr. Richard Bernstein, whose promotion of the utra-low-carb diet for diabetics has made him such a controversial figure.
The new online publication called The Journal of Participatory Medicine has just published a feature under the title: “Innovations in Participatory Medicine: The Advent of Do-It-Yourself Blood Glucose Monitoring.” Did you know that up until the 1980′s, the ADA was actually 
against encouraging patients to check their glucose at home?
Of course, we’ve all heard a hundred times about how lucky we are to live in the era of easy access to home glucose monitoring. It is a revolution in care, yada yada yada (I’m not unappreciative, just a little weary of doing it all day!)
What’s really interesting about this article, however, is the glimpse the author provides into the life and times of the famous Dr. Bernstein. He was diagnosed with type 1 diabetes at age 12, and later, as an adult engineer, “became the first patient to own and use a blood glucose meter by circumventing existing efforts to keep the technology in the hands of health care providers.”
He began to measure his glucose levels regularly and noted fluctuations throughout the day. He may have been the first to realize that using these readings to adjust insulin doses, patients could actually make an impact on their own BG levels, and decrease the likelihood of dangerous lows (hypoglycemia).
What’s more (and excuse the lengthy quote, but author Jeana Frost writes it so well; the bold bits are my emphasis):
“Having experienced this personal health transformation, Dick Bernstein became a champion for patient-monitoring and good self-management. He established close relationships with inventors in the industry and helped companies organize and fund innovations in designs. He presented at professional meetings and asked manufacturers to present their monitors to patients at conferences. Internationally, manufacturers and providers were more open to Dick Bernstein’s ideas. Ames received private funding to develop a portable monitor for patients that was then distributed throughout Europe and the Middle East in the late 1970s.
“Bernstein found, however, that on his own even as an engineer, a diabetic, and a precursor to the current “Quantified Self” movement, in the US he was unable to be a strong advocate for patient monitoring. Journals refused to publish his studies. He elicited the help of the marketing department at Ames, a man named Charles Suther, and through him, of medical editors. But even with this help Bernstein was unable to get his writings published in the US. The American Diabetes Association (ADA) was skeptical of Bernstein’s ideas and renegade attitude towards medical practice. As a 43-year-old, highly focused on his own health and determined to share his insights, Bernstein therefore decided to become a doctor. He attended Albert Einstein Medical School and became an endocrinologist. After graduation, he formed a practice treating other people with diabetes.
“Although Dick Bernstein did not invent glucose monitors, he transformed how the technology was used and who used it. As a patient-participant in his own care, he had a personal insight about his own practice and became a crucial force that resulted in a fundamental shift towards participatory medicine in diabetes care. He was not the first patient to monitor blood sugars. But he was the first patient to have a blood glucose monitor and insights about the value of regularly self-monitoring glucose levels.”
Who knew Bernstein was such a champion for innovative technology?! This just goes to show you how the public gets fixated one on thing, and often won’t let it go. What I’m hinting at here is that the name “Richard Bernstein” has become in some senses a bulwark dividing the diabetes community: you either believe in his little-to-no-carb diet doctrine, or you don’t. If you don’t, the believers may very well shout you down as a heretic and a sloth (too lazy to follow the “right path”). I wonder if that kind of black-and-white thinking is in keeping with Bernstein’s evident role as the Father of Do-It-Yourself Diabetes Care?
In any case, as one PWD who finds life extremely unpleasant without carbs, I just wanted to take a moment to thank Dr. Bernstein for his other contribution to successful treatment of this exasperating illness.
Ok, I am not a believer…but I do respect the strides made by the doctor. It seems he faced the same challenges with self testing that some face today with many medications. As soon as something shows promise the FDA requires a prescription for it. I wonder if the day is coming when we will need a script for vitamin C?
I agree with Dr. Bernstein about low carb diets producing the best blood sugar management results. Simply because it is a fact that the less insulin you use, the lower the margin of error is. Insulin is always absorbed a bit differently each time we give it and this is how less insulin equals a lower margin of error. I can’t see how the math here is indisputable…?
I do however, recognize that the majority of people do not thrive on a very low carb diet. They don’t feel well, their energy levels are low, etc. This means that realistically most of us cannot follow his recommendations to a T. I do what I can to minimize carbohydrates but, I still consume plenty via fruits and vegetables. Others maybe can see how well they do on it and if they don’t feel well-listen to the body and add carbs from high quality sources until you do feel well.
I find nutritional typing very valuable in this regard. So I would say Dr. Berstein’s low carb advice should be more of a recomendation of “do what you can” instead of “do this no matter what”.
I too am thankful for his other contribution
I have much respect for Dr. Bernstein. He’s from a generation of type 1 diabetics who rarely saw 60 candles on a birthday cake. He’s in his 70s and still practicing medicine full-time!
-Steve
Well said. I do not enjoy following Dr. Bernstein’s diet plan, but have read his book many times and always learn something new.
I have a friend that since going onto the Dr. B routine – has maintained A1C’s of I think 4.6% or maybe lower. She keeps her BG’s as close to 80 as she can using his methods of control. Now, it’s not for me, and she knows this (we have fun bouncing off me as the Evil Diabetic her as the Good Diabetic) – but it works for her. Again, like you say, many people poo poo Dr. B – but they forget what he had to deal with when he was diagnosed – and how he strode ahead with getting BG monitors out to the world. Would I still be alive after almost 50 years of being a diabetic without some of the medical advances that he’s brought to the world – maybe not – but I applaud Dr. B for educating us / himself on how to live a better life (and yes – I do try to eat a somewhat low carb diet – but not under 30grams a day – more like 120 grams a day).
Thank you, Dr. Bernstein, (and Amy), for making me realize how much I owe to you for today’s bg testing technology.
This example of the medical community’s lack of flexibility is sobering.
I totally admire Dr. Bernstein’s biographical story, getting himself through medical school and the large, typewriter sized BG monitor (minotaur?) that he had back in the days. I agree that low carb = blech but I like to have that option sometimes too and testing= variety which, after all, is the spice of life?
I have been eating very low carb for over 7 years (a la Dr. Bernstein) and feel much better than I would if I was eating more carbs than my body will tolerate. (I keep my BGLs under 100 at all times; I aim for mid-80s.)
Some people do have a period of adjustment when they first start restricting their carbs and/or keeping their BGLs at normal levels, but once adjusted, most people feel better than they have in a long time and complications from diabetes have been known to stop their progression and even reverse.
I am a type 2 and don’t use insulin (or other meds), so I don’t have to deal with insulin adjustments, but Dr. B provides a lot of guidance for those who do. I have read his books, so yes, I knew all about his use of glucose meters to develop his Diabetes Solution, his push to get those meters to us so we can use them to control our BGLs, too, and his becoming a doctor so people would take him seriously.
I believe following Dr. B’s guidelines for keeping my BGLs at nondiabetic levels will allow me to control my diabetes without any meds for the rest of my life. If I was a type 1, I would still eat low carb to keep my insulin dosage low and avoid a BGL roller coaster.
Eating low carb is not boring because I keep dreaming up new recipes to add variety to my menus and to share with others: http://www.squidoo.com/DARdreams.
I (T1 since 1984, 42, ran 2x 1/2 marathons in two weeks this spring, 1st Dan @ Tae Kwon Do) eat lower carbs than I used to b/c I like not weighing as much as I used to (275#, now about 195, 5’10″) but I like to let ‘er rip every once in a while.
It *totally* annoys me that the MedicalIndustrialComplex (including the deservedly esteemed Dr. B…) *refuses* to acknowledge dietary and lifestyle diversity for people w/ diabetes. I think that it is is possible but requires input and aggressive monitoring and I think *that* should be the goal of medicine, not merely meeting an A1C goal? I haven’t read Bernstein’s book for a while but I recall that he was not a big fan of cardio exercise as he advocated weightlifting as ‘appropriate’? I like that too but it’s fun to go running, biking, walking, etc. and a doctor should be able to give a patient w/ diabetes the tools to manage all of the above instead of just being like “well, it’s trial and error so keep tryin’”. A lot of times, they are more like “hmm, these activities seem…risky. You have a lot of lows…”. Duh. Keep the test strips coming daddy-o…
Different types of treatment suit different people. Some will find that dropping carbs relatively easy and some, like myself, wouldn’t want to carry on without my carbs!…..we’re in love!
From what I can see Doc B’s main merit is the implementation of the healthy bg-curve with D. It presents us with the most effective relief from the risk of all complications and it is most easily achieved with low-carb and low doses of insulin. I don’t think that the old man would strongly object to someone’s achieving his healthy bg with some more carbs and some more insulin.
The most important thing that impressed me about Dr. B’s advice is to test, test, test! I’m moderately insulin resistant & with testing and low-carb eating, I’m hoping to prevent or minimize my inherited significant predisposition to diabetes. His detailed explanations of how carbohydrate metabolism works enables me to make the many small decisions needed to keep my BG minimized and stable. I visualize my glucose transporters as “hand vacs” that I must keep plugged in, either with insulin or exercise. I visualize unnecessarily high insulin as “acid” circulating in my veins. My 2 best friends are my glucose monitor and a small stair stepper beside the dining table, to be used within 15-20 minutes after a meal. 2-4 minutes on that stair stepper can lower BG by 15-50 mm.
Amy, I’m so grateful for this post. As I may have told you, I’ve long felt that PWDs are the archtypical, prototypical e-patients: engaged in their care, educated, equipped, and in the case of your crowd, absolutely empowered. It may be out of necessity but it’s exemplary.
In hindsight what do you make of the ADA’s reasoning (or the establishment’s in general) for discouraging self-monitoring, and what thoughts can we present to open-minded people in today’s medical establishment that could be persuasive about the validity of patients being active participants? For instance, is there a stat like “Before self-monitoring, outcomes were x and complications were y. Today, both are 3 times better.”
And in hindsight did the ADA learn anything?
I like Bernstein’s method and I follow it… some of the tim, but am not always as restrictive with carbs. Staying under 50-100 grams works for me. I have an insulin pump and can eat that piece of cake or a delicious mango now and then.
I would recommend his methods to people who aren’t doing well on their current management as a way to get a handle on things. But whatever method works for you, works. The divided d-community can surely be a little more accepting of ‘the other side’.
Bernstein is definitely a pioneer in many ways, so I salute him. Without his methods, many people would not be doing as well as they are.
[...] Amy Tenderich at Diabetes Mine has a post about Dr. Richard Bernstein, subject of Jeana Frost’s “Innovations in Participatory Medicine: The Advent of Do-It-Yourself Blood Glucose Monitoring,” recently published in the Journal. Bernstein was a champion for innovative glucose monitoring systems – has Frost writes, he “did not invent glucose monitors, [but] he transformed how the technology was used and who used it.” [Link] [...]
I think that everyone living with diabetes should at least read his book. Whether or not you decide to apply his methods, you’ll learn a lot of great information from his book.
You have to respect a man who has 1) lived so well so long with diabetes, and 2) worked so hard to figure it out on his own.
If you read his book ,you learn that the ONLY way he got that first monitor was because he was married to a physician — because only physicians and emergency rooms were “allowed” to buy monitors back then.
His book is worth the read, even if you aren’t going to try super low carb.
A doctor friend persuaded me a few years ago to go on a vegetarian diet “to help my diabetes.” I gained 48 lbs in less than a year! My own doctor told me I looked pregnant (I was a 70 year old male) Then I read Gary Taubes two books on weight and fat, followed by Dr. Bernstein’s book. I went on Dr. B’s recommended diet and have lost 50 lbs and now look forward to losing even more. My insulin needs have decreased and I am now his complete convert. I think the secret to making Dr. B’s plan work is to create a diet with great diversity. I learned to make the little cheese toast things in the microwave and regularly sit down with a dozen toppings and ingredients and make a wonderfully varied and tasty meal.
One of my big problems is that I am on Medicare and they balk at even providing me with 5 glucose test strips a day and I need more.