I do not know of many diabeticswho developed the illness around the time I did, in 1946, who are still alive.
I know of none who do not suffer from active complications.
The reality is, had I not taken charge of my diabetes, it's very unlikelythat I'd be alive and ac tive today.Many myths surround diet and diabetes,and much of what is still considered by the average physician to be sensible nutritional advicefor diabeticscan, overthe long run, be fatal.
I know, because conventional "wisdom" about diabetes almost killed me.
I developed diabetes in 1946 at the age of twelve, and for more than two decades I was an "ordinary" diabetic, dutifully following doctor's orders and leading the most normal life I could, given the limitations of my disease.
Over the years, the complications from my diabetes became worse and worse, and like many diabetics in similar circumstances, I faced a veryearlydeath.
I was still alive, but the qualityof my lifewasn't par ticularly good.
I have what is known as type 1, or insulin-dependent, diabetes, which usually begins in childhood (it's also called juvenile- onset diabetes).
Type 1diabetics must takedailyinsulin injectionsjust to stay alive.
Backin the 1940s, which were very much still the "dark ages"of di abetes treatment, I had to sterilize my needles and glass syringes by boiling them every day, and sharpen my needles with an abrasive stone.
I used a test tube and an alcohol lamp (flame) to test my urine for sugar.
Many of the tools the diabetic can take for granted today were scarcely dreamed of back then , there was no such thing as a rapid, finger-stick blood sugar-measuring device, nor disposable in-
My Lifewith Diabetes xiii
sulinsyringes.
Still, eventoday, parents of type 1 diabetics have to five with the same fear my parents lived with , that something could go disastrously wrong and they couldtry to wakeup their child and dis cover him comatose, or worse.
For any parent of a type 1diabetic, this hasbeen a real and constant possibility.
Because of my chronically elevated blood sugar levels, and the inability to control them, my growth was stunted, as it is for many juvenile-onset diabetics evento this day.
Back then, the medical community hadjust learned about the rela tionship between high blood cholesterol and vascular (blood vessel and heart) disease.
It was then widely believed that the cause of high blood cholesterol was consumption of large amounts of fat.
Since many diabetics, even children, have high cholesterol levels, physi cians were beginning to assume that the vascular complications of diabetes , heart disease, kidney failure, blindness, et cetera , were caused by the fat that diabetics were eating.
As a result, I was put on a low-fat, high-carbohydrate diet (45 percent of calories were to be carbohydrates) before such diets were advocated by the American Diabetes Association or the American Heart Association.
Because car bohydrate raises blood sugar, I had to compensate with very large doses of insulin, which I injected with a 10 cc"horse" syringe.
These injections were slowand painful, andeventually they destroyed all the fatty tissue underthe skinof my thighs.
In spite of the low-fat diet, my blood cholesterol became veryhigh.
I developed visible signs of this state , fatty growths on my eyelids and gray deposits around the iris of each eye.
During my twenties and thirties, the prime of life for most people, many of my body's systems began to deteriorate.
I had excruciatingly painful kidney stones,a stone in a salivary duct,"frozen" shoulders, a progressive deformity of my feet with impaired sensation, and more.
I would point theseout to my diabetologist (who was then president of the American Diabetes Association), but I was inevitably told,"Don't worry, it hasnothing to do with yourdiabetes.
You're doing fine." But I wasn't doing fine.
I now know that most of these problems are com monplace among those whose diabetes is poorly controlled, but then I was forced to acceptmy condition as"normal." By this time I was married.
I had gone to college and trained as an engineer.
I had smallchildren, and even though I was not much more than akid myself, I feltlike an old man.
I had lost the hairon the lower parts of my legs, a sign that I had developed peripheral arterial dis-
xiv My Lifewith Diabetes
ease , a complicationof diabetes that caneventuallylead to amputa tion.
During a routine exercise stress test, I was diagnosed with car diomyopathy, which is a replacement of muscle tissue in the heart with fibrous (scar) tissue , a common cause of heart failure and death among thosewith type 1 diabetes.
Even though I was "doing fine," I suffered a host of other compli cations.
My vision deteriorated: I suffered night blindness, micro aneurysms (ballooning of thebloodvessels in my eyes), macular edema (swelling of the central portion of my retinas), andearly cataracts.
Just lying in bed caused pain in my thighs, due to a common but rarely diagnosed and barely pronounceable diabetic complication called iliotibialband/tensor fascialata syndrome.
Putting on aT-shirt was ag onizingbecause of my frozen shoulders.
I had begun testing my urine for protein and found substantial amounts of it, a sign, I had read, of advanced kidney disease.
In those days , the middleandlate 1960s , the lifeexpectancy ofatype 1di abetic with proteinuria was five years.
Back in engineering school, a classmate had told me how his nondiabetic sister had died of kidney disease.
Before her death she had ballooned with retained water, and after I discovered my own proteinuria, I beganto have nightmares of blowing up like a balloon.
By 1967 I had these and other diabetic complications and clearly appeared chronically illand prematurely aged.
I hadthree small chil dren, the oldest only six years old, and with good reason was certainI wouldn't live to see them grown.
At my father's suggestion, I started workingout daily at alocal gym.
He thought that if I were to engage in vigorous exercise, I might feel better.
Perhaps exercise would help my body help itself.
I did feel slightly less depressed about my condition , atleast I felt I was doing something, but I couldn't build muscles or getmuch stronger.
Aftertwo years of pumpingiron,I remained a 115-poundweakling, no matter how strenuously I worked out.
It was at about this time, in 1969, that my wife, a physician, pointed out to me that I had spent much of my life going into, experiencing, or recovering from hypo glycemia, whichis a state of excessively lowblood sugar.
It was usually accompanied by fatigue andheadaches, andwas caused by the unpre dictable action of the large doses of insulin I was taking to cover my high-carbohydrate diet.
During suchepisodes, I became confused and unruly and snapped at people.
These frequent hypoglycemic episodes had taken their toll upon my parents, and weretaking their toll upon
MyLifewith Diabetes xv
my wife and children.
The strain on my family was clearlybecoming untenable.
Suddenly, in October of 1969, my life turned around.
I had been the research directorofa company that made equipment for hospitallaboratories, but recentlyI had taken a new job as an offi cer of a housewares corporation.
I was still receiving trade journals from my old field, and one day I opened the latest issue of a publica tion calledLabWorld.
I came upon an advertisement for a new device to help hospital emergency rooms distinguish between unconscious diabetics and unconscious drunks duringthe night,when laboratories were closed.
Knowing that an unconscious person was a diabetic and not drunk could easily help hospital personnel save his life.
What I stumbled upon was an ad for a blood sugar meter that would give a reading in 1 minute, usinga single drop of blood.
Since I'd been experiencing many blood sugars that were too low, and since the testsI hadbeen performing on my urinewere whollyin adequate (sugar that showsup in the urine is already on its wayout of the bloodstream), I figured that if I knew what my blood sugars were, perhaps I could catch and correct my hypoglycemic episodes before they made me disoriented and irrational.
I marveled overthe instrument.
It had a 4-inch galvanometer with a jeweled bearing, weighed 3 pounds, and cost $650.1 tried to order one, but the manufacturerwouldn't sell it to patients, only to doctors and hospitals.
Fortunately, my wife, as I've said, was a physician, so I orderedone in her name.
I started to measure my blood sugar about 5 times each day, and soon saw that the levels were on aroller coaster.
Engineers are accustomed to solvingproblems mathematically, but you haveto have informationto work with.You have to know the mechanics of a prob lem in order to solve it, and now, for the first time, I was gaining in sight into the mechanics and mathematics of my disease.
What I learned from my frequent testing was that my own blood sugars swung from lowsof under 40 mg/dl to highsof over400 mg/dl about twicedaily.
A normalblood sugar level isabout85mg/dl.* Small won der I wassubject to suchvastmood swings.
*Althoughmost medical journalsand textbooks throughout the world measure blood glucose in mmol/1 (millimoles per liter), most physicians, laboratories, and blood glucose metersin the UnitedStates measure blood glucose in mg/dl
xvi MyLifewithDiabetes
In an effort to level my blood sugars, I began to adjust my insulin regimen, and went from one injection a dayto two.
I made some ex perimental modifications to my diet, cutting down on the carbohy drates to permitme to take less insulin.
The veryhigh and low blood sugar levels became less frequent, but few were normal.
Three years after I started measuring my blood sugar levels, my di abetic complications were still progressing, andI was stilla 115-pound weakling.
Mysense of gaining insight intothelong-term complications of my diabetes haddiminished, and soI ordered acomputer search of the scientific literature to see if exercise could prevent diabetic com plications.
In those days, computer searches were not the simple, al most instantsearches they are today.
In 1972 you madeyour request to the local medical library, whichmailedit to Washington, DC,whereit was processed.
It took about twoweeks for my $75 printoutto arrive.
There were quite a few entries of interest, and I ordered copies of the original articles.
For the most part these were from esoteric jour nals and dealt with animal experiments.
The information I had hoped to find didn't exist.
I didn't find a single article pertainingto the pre vention of diabetic complications by exercise.
What I did find was that such complications had repeatedly been prevented, andeven reversed, in animals.
Not through exercise, but by normalizing blood sugars!
To me, this was a totalsurprise.
All of dia betes treatment was heavily focused in other directions, such as low- fat diets, preventing severe hypoglycemia, and preventing apotentially fatal extreme high blood sugar condition called ketoacidosis.
Thus it had not occurredto me that keepingblood sugarlevelsascloseto nor mal as possible for as muchof the time as possible would makea dif ference.
Excited by my discovery, I showed these reports to my physician, who was not impressed. "Animals aren't humans," he said, "and be sides, it's impossible to normalize human blood sugars." Since I had beentrained as anengineer, not as a physician, I knewnothingof such impossibilities, andsince I was desperate, I hadno choice but to pre tend I was an animal.
I spentthe next year checking my blood sugars 5-8 timeseach day.
Every few days, I'd makeasmall, experimental change in my dietorin-