The Gifts of Experience

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By: Laura Murphy Baillie

There is no doubt that living with type 1 diabetesis a fulltime job. But like any job, the moreknowledgeable and skilled you become, the betteryour chances of success.

This is the powerful and hopeful message that six“pioneers” with type 1 diabetes have come to believe andwant to communicate.

Pioneering Type 1s Share Their Stories

Robert Spiro, C. Lynn Wickwire, Connie Giraud, SandyAsherman, Don Ray and John Bennett have lived withtype 1 for most of their lives. Even with half a century ofexperience and effort behind them, they find themselveson the winning side of a disease process that challengestheir very survival every minute of every day.

When discussing their histories, all six demonstratetheir skills as innovators and experts of diabetes self-management.Because of this, many researchers and investigators regularly invite them to volunteer as research subjects in their studies, a testament to their unique value to science. There is some irony in their receiving such attention, because they have spent many years proving scientists wrong.

Proving the Prognosticators Wrong

To better understand why, imagine going back about50, even 60 years, when these six pioneers were youngand first diagnosed. Instead of predictions of long andhealthy lives, they were told to expect an early death anddisabilities such as blindness and kidney failure.

In the face of such bleak expectations, they forged onand built their families and careers. But because thefield of diabetes management was brand new, they hadno information about how to balance insulin with food,exercise and stress. Daily life meant enduring wildlyfluctuating blood glucose levels, guessing appropriateinsulin doses and resisting the always-present fear of comaand death.

These hard times lasted for decades. Trying to controlblood glucose levels was a very complex job for everybodyinvolved, and the need to establish accurate treatmenttechniques was crucial for survival.

Experimentation Was the Key to Survival

Over the years, these pioneers kept experimenting withevolving treatment techniques such as urine testing,animal-derived insulin and insulin pumping to findaccurate methods of insulin delivery and blood glucosetesting. The resulting data helped scientists develop ourmodern blood glucose meters, insulin pumps and insulinpens. These technologies now form the standard platformof diabetes treatment techniques and have transformedthe lives of millions throughout the world.

For their dedicated participation in these importantcontributions, and with great honor and respect, thisgroup of elders has the well-earned distinction ofbeing hailed as pioneers for their extraordinary experienceand achievement.


Secrets of Success From Six Type 1 Veterans

Connie Giraud, 82, Michigan, type 1 since 1944 at age 21

Connie owned an insurance firmand worked as a secretary for awholesale business. After studiesat Tulane University, she acted as aspiritual adviser to people in hospitalsand nursing homes. Connie hasexperienced all of the usual trials oflife with diabetes, and she has hadthe usual difficulties with fluctuatinghigh and low blood glucose levels,especially before she was able tofirst obtain a blood glucose meter24 years ago. An active woman whohas exercised all her life, Connie hastraveled to 33 countries. In 1985 shehad heart bypass surgery.

A1Cs: NA

Diet

  • Breakfast: A small glass of orange juice, a bowl of Fiber One cereal, milk.
  • Lunch: Whole wheat toast, fish, lots of vegetables, fruit.
  • Dinner: A small portion of meat, fruit, a glass of milk, 4 ounces of Merlot.

Insulin regimen: Humalog 4 units ateach meal; Lantus 4 units at dinner.

Testing regimen: Checks her bloodglucose four times a day with a Freestyle meter.

Health plan: Medicare and LouisianaCPA Group Health Care—doesn’t cover insulin.

What bothers you most about havingdiabetes?
Frustration with having to constantlypay attention to diabetes.

How important is it to have apositive attitude?
A positive attitude is essential forhealthy longevity. Spirituality bolstersthis.

Words of wisdom: Love life and dowhat is necessary to stay healthy.

Robert Spiro, MD, 76, Massachusetts, type 1 since1954 at age 25

Robert was in medical school learning aboutthe endocrine system when hestarted to show symptoms of type1. His professor told him he wasmisdiagnosing himself, because hehad known many medical studentswho mistakenly believed they hadwhatever diseases they were studyingat the time. But Robert’s instinctswere correct, and after receiving hismedical degree he immersed himselfin diabetes as a researcher at the JoslinClinic in Boston. Robert believes hissuccessful longevity with type 1 is dueto his medical training and instinct.

A1Cs: Between 4% and 5%

Diet

  • Breakfast: Oatmeal, toast, coffee.
  • Lunch: Ham, fish or chicken sandwich on white bread with tomatoes.
  • Dinner: Chicken, fish or veal, rice or pasta, carrots, string beans, tomatoes, zucchini, diet yogurt.

Insulin regimen: Uses an insulin pump and NovoLog insulin.

Testing regimen: Tests six to eight times daily with a Bayer Glucometer Elite XL.

Health plan: Medicare Medex covers all but insulin.

What bothers you most about havingdiabetes?
Frustration. Excellent controlsometimes results in frequenthypoglycemic reactions. But in 50years, he has never fallen unconscious.

How important is it to have apositive attitude?
Very important. It greatly affectshealthy longevity.

Words of wisdom: Consider havingdiabetes to be a challenge that you canmeet and accept.

Don Ray, 71, Ohio, type 1 since 1939 at age 4

It may seem unlikely to survive blood glucose levelsof 1,200 mg/dl, but Don has. Whenhe was severely hurt in a car crashseveral years ago, his blood glucosewent wild as his body struggled todeal with many massive injuries. Donbelieves that he survived the crashbecause the structured diabetestreatment he has followed for thepast 66 years kept him healthy. Donworked for American Greetings for37 years, and now he concentrates hisenergy on mentoring and motivatingparents and kids who are new tohaving diabetes. He has activelyplayed and coached sports all hislife, and they are still his passion.He wrote and self-published a bookabout his experiences with diabetesand with advice for living well withdiabetes.

A1Cs: 6%

Diet

  • Breakfast: Two eggs, one slice of toast, a small glass of orange juice, a glass of milk.
  • Lunch: Meat, poultry or fish, bread or potato, vegetable, milk.
  • Dinner: Meat, poultry or fish, bread or potato, vegetable, milk.

Insulin regimen: Went on the pumpand takes about 8 units of Humalog atmealtimes plus the basal insulin ratecontinuously.

Testing regimen: Checks his bloodglucose four to five times daily, usingan Accu-Chek Advantage meter.

Health plan: Has Medicare as hisprimary insurance and Healthscopeas his secondary plan. Pays for insulin.

What bothers you most about havingdiabetes?
The most frustrating thing in mydiabetic life was that I was not allowedto compete in sports while in highschool.

How important is it to have apositive attitude?
I believe that a positive attitude is veryimportant in controlling, staying astep ahead of, and even being betterthan diabetes.

Words of wisdom: Don’t let fear oranything else hold you back. Every dayis a super day, so don’t waste it.

Sandy Asherman, 65, New York, type 1 since1953 at age 13

Sandy is a trained social workerand teacher now working as a business consultantteaching negotiation. She makes surethat the children she mentors realizethat diabetes is not necessarily a deathsentence. Her mission is to make itclear to parents and kids that fear caninterfere with healthy treatment.

A1Cs: 6%

Diet

  • Breakfast: Coffee with milk; either some Stonyfield yogurt—when in a hurry—or oatmeal; skim milk, bran, raisins and walnuts.
  • Lunch: A large salad with cheese or a sandwich of whole wheat bread, lettuce, tomato, cheese or vegetable.
  • Dinner: Salad, vegetables, meat—three to four times per week. If she’s at a special restaurant, she shares dessert with her husband—usually just a spoonful or two. She also eats lots of fish.

Insulin regimen: NovoLog, 18 to26 units per day delivered by insulinpump. The total dose varies dependingupon how much she exercises.

Testing regimen: Seven to 10 timesper day, depending upon exercise. Sheuses a Medtronic Paradigm.

Health plan: United Health Care.Completely covers all testing andpump supplies and insulin.

What bothers you most about havingdiabetes?
The time it takes to take care ofmyself.

How important is it to have apositive attitude?
Not sure whether a positive attitudehelps longevity, but it sure helps makewhatever time you have much morefun!

Words of wisdom: Don’t let fear standin your way.

C. Lynn Wickwire, 65, Massachusetts, type 1 since1944 at age 4

Lynn is a lifelong runner. Hisprofessional life included city planning, regulating thecable industry and marketing mutualfunds. Lynn uses an insulin pumpand keeps his A1C levels as close tonormal as possible. A music lover, heworks out vigorously several times aweek and pays attention to everythingrelated to diabetes.

A1Cs: 6%

Diet

  • Breakfast: Half a cup of McCann’s instant oatmeal cooked with skim milk, and couple of cups of good decaf coffee. Sometimes he eats a couple of egg whites, either scrambled or in an omelet with onions and tomato and one piece of dry whole wheat toast.
  • Lunch: Half a sandwich or some soup or a salad of some sort with some protein in it.
  • Dinner: Something heart-healthy like turkey meatballs with fresh roasted asparagus, salad and one small piece of bread with a glass of red wine.

Insulin regimen: Wears a MiniMedpump and uses NovoLog insulin.Total amount used in a day isapproximately 25 units, with the basalbeing 0.5 units per hour, except frommidnight to 4 a.m., when it is set at 0.6units per hour.

Testing regimen: He tests at least sixto eight times per day, using the BDmeter.

Health plan: Blue Cross/Blue Shield“Blue Choice” plan with the co-pay10/25/45. Has been with them forquite some time and has found themto be very good.

What bothers you most abouthaving diabetes?
I am not sure I have any frustrationdealing with diabetes. It is a fact andyou have to deal with it—so get onwith life.

How important is it to have apositive attitude?
There is no question in my mind thathaving a positive attitude makes a bigdifference in affecting longevity withdiabetes. I have always viewed theglass as being half full, and I am sureit has had a positive impact in how Ihandle everything.

Words of wisdom: Learn how to dealwith your diabetes, because livingwith it is not the end of the world.

John Bennett, 56, Florida, type 1 since1955 at age 6

John had a long career asa computer science analyst and nowdoes Web design work. When hisdaughter, who has type 1 as well,started using an insulin pump at thesuggestion of her doctor, she agreedto the new technology only if herfather agreed to use it, too. He feelsthat using the pump has given himmore freedom. He is a self-publishedauthor of a book written from aChristian perspective detailing his lifeexperiences with diabetes.

A1Cs: 6% to 7%

Diet

  • Breakfast: Eggs, toast and coffee. Sometimes cereal, cheese and coffee.
  • Lunch: Sometimes hotdogs and rolls or a sandwich, maybe with soup. He also likes diet drinks.
  • Dinner: Some type of meat product or poultry, potato, and always at least two vegetables. Dessert, if any, is mostly fruit. Snacks between meals might be crackers and cheese, and he tries to eat some fruit each day.

Insulin regimen: Uses Humalog inhis pump. His three-day supply is 160units, so more than 53 units a day.

Testing regimen: Tests at least eighttimes a day and uses the One Touch Ultra.

Health plan: Connecticut GeneralPPO with a yearly $100 dollardeductible. Out of pocket expense is20 percent of the coverage cost, andflat fees for doctors’ visits ($15) andmedicine costs depend on whetheror not they are generic. Most ofhis pump supplies (after his yearlydeductible) are covered 100 percent.

What Bothers You Most AboutHaving Diabetes?
Other people not caring tounderstand my condition. Forexample: During 30 years of workingfor the same company, I have hadone extreme low blood glucose thatrequired medical assistance. I wassent home for the day where I didnothing and lost a day’s sick leave.

How important is it to have apositive attitude?
I personally think that my religiousbeliefs create my positive attitude.Living with diabetes for over 50 years,you might say that my attitude is, atleast, all right.

Words of wisdom: Follow the rulesand control blood glucose the best youcan.


Tips From the Experts

The life histories of these pioneers are full of joys anddisappointments, trials and successes, and they appreciate it all.Some of the behaviors they have adopted along the way are to

  • Learn constantly.
  • Keep moving in a healthy direction.
  • Stay connected with a team of medical experts.
  • Participate actively in the world.
  • Be of service to others.

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