I am writing this as a companion to the web pages of my husband, Robert G. Spiro, M.D., who has described in some detail his experiences living for 57 years with Type 1 diabetes without developing any of the complications of this disease (see links below: "More Than50 years of Type 1 diabetes" and "Suggestions for living with type 1 diabetes". Since we have been married now for 59 years, I have experienced both the trauma of having a loved one diagnosed with a serious disease and then the process of adapting to the life style required for coping successfully with such a demanding condition. Perhaps I may be able to speak to others like myself who live with and give support to a person with type 1 diabetes.
I was born Mary Jane Paisley in Syracuse, N.Y., in 1930, to parents of Scottish (John Paisley) and Norwegian (Julianne Ellingsen Paisley) origins. My only sibling, William J. Paisley, was born in 1937. After graduating from Syracuse Central High School, I received an A.B. from Syracuse University in 1952 and a Ph.D. in Biochemistry from that university in 1955. While a graduate student I met and married (1952) Robert G. Spiro, who was a medical student at that time. He received his M.D. degree in 1955 and after a year of postdoctoral studies for me at SUNY Upstate Medical Center and a year's internship for him, we moved to Boston and became affiliated with Harvard Medical School where we spent the remainder of our careers.
Diagnosis of Robert's diabetes
The most important happening in our early married life was the 1954 onset of type 1 diabetes for Robert who had suddenly lost about 20 pounds. As a senior in medical school, he made his own diagnosis by going to the hospital lab and performing a urine sugar test. Robert had always been interested in diabetes because his grandfather developed it in the 1920's, just when insulin became available for treatment. Robert had read the classic text book of Elliott P. Joslin and this convinced him that diabetes is a disease that can be managed by strict attention to the details of daily life - eating appropriate meals, doing measurements for sugar in urine and blood and administering the insulin injections several times a day. Obviously our lives changed substantially after this event.
Early blood and urine tests
In 1954, there were no easy tests for glucose, either in the urine or in the blood. For the urine, there were tablets available which when dropped into a test tube containing a little urine foamed furiously and came out either blue (no glucose) or a brick red (much glucose). Nothing was available for measuring sugar in the blood outside of the laboratory, but since I was training as a biochemist I knew how to carry out such a test. I was able to bring home the reagents which were needed and to obtain a pipet to measure the 200 microliters of blood required (today's meters can use 10 microliters or less), but we needed a centrifuge to spin down the precipitated blood proteins. Fortunately my brother Bill was ingenious and from an old 78 rpm record player and a bent wire hanger, he was able to fashion a centrifuge for which I prepared little glass tubes using the oxygen torch in lab. After centrifuging the blood, the appropriate reagents were added to the clear supernatant and the test tubes were boiled in a Pyrex measuring cup using the little travel heater still sold today for making tea or coffee. The final color was measured in an out-dated, discarded colorimeter that I brought home from lab. This procedure took about 30 minutes each morning and Robert always kept a record of the values, as well as of how much insulin he took during the day, results of the urine sugar tests, and episodes of low blood sugar (hypoglycemia). As the methods for measuring blood sugar advanced, Robert was able to make these measurements several times a day, which is particularly important now that he uses an insulin pump and can easily adjust his dose as needed.
Sterilizing syringes and sharpening needles
During this early period there were also no disposable syringes or needles. The routine I had was to wrap the clean syringes in paper and heat them on a rack in a pressure cooker until they were sterilized. Before sterilizing, the needles (which were much larger than those used today) had to be sharpened on a fine stone to minimize the pain of injection. Since Robert from the beginning took 3 to 4 injections a day, every weekend I would prepare a week's worth of supplies.
The necessary companion to the insulin schedule is the daily meal plan to make sure there is a balance between the supply of sugar to the blood and its uptake by the tissues. After the amounts of carbohydrate, protein and fat for each meal are established, the challenge comes in matching the amount of food to the appropriate calorie values. I have always used a scale in cooking, first the rather large and cumbersome dial scales and more recently the small versatile digital scales which are readily obtainable on line (I like the Ohaus Scout CS5000 because it has a large enough capacity to put on a plate or bowl, zero the scale and then weigh the food). When baking I use a plastic mixing bowl, zero it, and add successively the various ingredients, zeroing the scale between each addition.
Nowadays all packaged foods have the calorie content as well as the grams of carbohydrate, protein and fat. The Department of Agriculture has had for many years excellent tables of food composition and I have a much-used book of theirs printed in 1963 (Composition of Foods, Agriculture Handbook No. 8) with a well worn cover and many cooking spots on it. Now these data are available on line at: http://www.nal.usda.gov/fnic/foodcomp/search/ and this information is very helpful in preparing meals, making it possible to know, for example, which vegetables are low calorie and which are relatively high. Although in terms of insulin requirement the amount of carbohydrate (sugars) present is the most important, don't forget to look at the fat and cholesterol data as well because of the importance to limit them particularly for the sake of cardiac health.
I have several small notebooks in which I have converted recipes from cups to grams, together with the calculation of how many portions are represented in the recipe. For example when I make oatmeal, I weigh the dry oats for individual portions, add the water and use the microwave.
For desert I make simple cakes which do not need frosting, such as applesauce cake or yogurt cake with blueberries or apples. I weigh the whole cake after baking and since I have already determined the total carbohydrate calories of the recipe I can calculate how many grams to weigh per portion.
Since the carbohydrate intake has to be monitored closely, it is important to include in the meal some items which contribute very little. For dinner I try to always have a salad as well as several low-calorie cooked vegetables. That way it is much easier to feel full by the end of the meal.
There is an excellent website by the authors of several cookbooks for diabetics that contains a large number and variety of recipes: http://www.diabetic-recipes.com/
In addition there are several useful links on this site that will help you with your meal planning.
When we are invited to dinner by a new friend who does not know of Robert's diabetes, I always call ahead and discuss the meal, first so that he will be able to eat what is prepared and secondly so that the hostess will not be insulted if he can't eat something. At first I was reluctant to do this, but early on I read that the wife of Dr. Minot, the Nobel Prize winning physician who found the cure for pernicious anemia and who also had Type 1 diabetes, always called ahead to her hostess. I personally have never found anyone who was not understanding when I explained the situation.
Eating at restaurants was always very problematic because of the uncertainty of when the meal would actually be served. If Robert took his insulin injection before we entered the restaurant and we had to wait a considerable time before the food arrived, he often would become hypoglycemic and have to start eating the rolls instead of the meal. For the past several years he has been using the insulin pump and now he can program his insulin bolus just as the meal arrives. The pump is also a convenient and private way to take insulin when traveling by plane.
After medical school, Robert spent a further year at SUNY Upstate Medical Center as an intern and we then came to Boston where we both undertook postdoctoral studies in the Department of Biological Chemistry at Harvard Medical School. In 1965, after several years doing research in the Thyroid Unit of the Massachusetts General Hospital, I joined the laboratory at the Joslin Diabetes Center which Robert had established to study the kidney complications of diabetes. Over the next 35 years we collaborated on many research projects (see the link below "My publications"). My affiliation with Harvard Medical School lasted until I retired in 1999; at that time I was an Associate Professor of Medicine (Biochemistry).
Perhaps our most important research project was the personal one testing Robert's belief in the importance of maintaining a near-normal blood glucose. In 1954 when he developed diabetes, many physicians told him that there was no relationship between the control of the blood sugar and the devastating complications of diabetes, such as blindness and kidney failure. As an intern he was very much affected by having as patients several young women who were going blind as a result of their diabetes. Analyzing the situation as a scientist he reasoned that since the normal person maintains a blood sugar within a very small range, neither too high nor too low, there must be an important reason for the complex body mechanisms that accomplish this. In order to conduct this experiment on himself he attempted to maintain close to normal sugar levels and he carried out a constant monitoring of his diabetes. Now he has 57 years of notebooks containing these records dating from 1954 detailing his blood sugars, insulin dosage, changes occurring with illnesses, travel, etc. Fortunately, his judgment was correct and after 57 years of the disease he is free of complications.
Moreover, our early studies with diabetic rats also showed clearly that good control reversed the changes produced in the kidney by the disease; these studies already in the 1970's helped to convince medical people of the relevance of control to the complications.
Today after the publication in the mid-1990's of the NIH sponsored multicenter, multimillion dollar clinical research study showing that tight blood sugar control prevents or minimizes complications, everyone agrees and Robert's own successful management of his disease can serve as an example to other patients.
In 1964 and 1966 we were blessed with the arrival of sons, David and Mark. I continued to work in the laboratory after the boys were born and I believe they were happy to know that I was working with their father doing research trying to find out more about diabetes. Both boys were always very supportive of Robert, complying with our somewhat rigid schedule of meals and also knowing instinctively when he was not feeling well because his blood sugar had suddenly become too low. I think that having illness in the family made them both very sensitive to other people's needs. Both sons went on to obtain Ph.D. degrees in the biological sciences and each has provided us with grandchildren - Lilia and Joshua (David) and Alex, Aleah and a new baby girl named Porter (Mark). In the picture below Robert is being entertained by Lily and Josh (upper frame) and Aleah and Alex (lower).
Although we have retired and closed the laboratory, Robert and I still spend time at the Joslin Diabetes Center keeping up with the latest developments in diabetes. Robert is Professor Emeritus at Harvard Medical School and I am currently a Senior Investigator Emeritus at the Joslin. In retirement I am enjoying the grandchildren, gardening and playing the piano.
Below are pictures of Grandfather Robert with the grandchildren: Lily and Josh in the top photo and Alex and Aleah in the lower one.