SERVING INDIVIDUALS WITH DIABETES WHO ARE BLIND OR VISUALLY IMPAIRED: A Resource Guide for Vocational Rehabilitation Counselors Ed Bryant, Contributing Editor Contributors: Prema Abraham, M.D. Veronica Elsea Francisco S. Escobar III, M.D. Diana W. Guthrie, Ph.D., FAAN, CDE Mimi Moore, M.S., RD Peter J. Nebergall, Ph.D. Thomas Pressly, M.D. Arturo Rolla, M.D. Joan Stout Betty Walker Anthony Cobb, General Editor Produced by the National Federation of the Blind and the Rehabilitation Research and Training Center on Blindness and Low Vision at Mississippi State University Copyright 1997 All Rights Reserved ACKNOWLEDGMENTS The editors acknowledge with gratitude the contributions to this monograph made by members of the project's advisory committee. These included Bob Brown, Margaret Cleary, Glen DiChiera, Carol Lewis, Jim Olsen, Darby Russell, and Nancy Waligorski. The editors are particularly grateful to those who reviewed the first draft and provided many sage, pointed, and helpful comments and suggestions: Ms. Margaret Cleary, MS, RN, CDE, CRT, CHE, Carroll Center for the Blind; Ms. Carol Lewis, Services for the Blind, Maryland Department of Rehabilitation Services; Dr. Lynne Luxton, CRT, Helen Keller Services for the Blind; Mr. Jim Olsen, American Council of the Blind Enterprises and Services, Inc.; and Ms. Darby Russell, MS, CRNP, CDE, Union Memorial Hospital in Baltimore. Mississippi State University Rehabilitation Research and Training Center on Blindness and Low Vision P.O. Drawer 6189, Mississippi State, MS 39762 This publication was prepared in accordance with NFB Resolution 93-01 dated June 9, 1993, and adopted by the Annual Convention of the National Federation of the Blind. Development of this document was supported in part by grant H133B10003-95B from the Rehabilitation Services Administration and administered under the auspices of the National Institute on Disability and Rehabilitation Research, U.S. Department of Education, Washington, DC. The opinions or policies expressed herein do not necessarily reflect those of the granting agency, and no official endorsement should be inferred. Mississippi State University does not discriminate on the basis of race, color, religion, sex, age, national origin, veteran status, or disability. TABLE OF CONTENTS INTRODUCTION 1 PART ONE: INTRODUCTION TO DIABETES 7 Myths About Diabetes: What You Tell Your Clients7 What is Diabetes Mellitus? 10 Diabetic Eye Disease 17 How Does the Eye Work? 19 What is Retinopathy? 20 How is Retinopathy Treated? 21 What Other Treatments are Available? 24 Conclusion 25 A Note on "Brittle" Diabetes 26 PART TWO: SELF-MANAGEMENT 29 New Dietary Guidelines for Diabetes Management 29 What About Diet and Diabetes? 29 What is Meant by Intensive Therapy? 30 How Do We Carry Out These Recommendations and Implement Intensified Therapy?32 What is Carbohydrate-Counting? 32 How Does All This Fit Into the Total Management Routine? 34 Review of Oral Diabetes Medications 43 Diabetes and Exercise 48 About Insulin 52 Insulin Measurement Devices 57 Insulin Measurement Systems 58 Home-made Insulin Measurement Gauges 61 Appliances and Holders 63 Pen Injection Devices 64 Syringe Magnifiers 65 Blind Diabetics Can Draw Insulin Without Difficulty67 How to Get Air Bubbles Out of an Insulin Syringe 68 How to Know When an Insulin Vial is Getting Low 69 Insulin Vials with Tactile Markings 73 I've Gotten Attached to My Insulin Pump74 New Insulin 83 Avoiding Hot Insulin 85 Questions About Blood Sugar Control 85 Talking Blood Glucose Monitoring Systems 87 Talking Glucose Monitors and Voice Boxes 89 LifeScan Modifications 95 Non-Invasive Glucose Monitors 100 Diabetes and the Feet 103 Medicare Pays for Diabetic Footwear 107 PART THREE: CURRENT MEDICAL ISSUES 111 Kidney Failure, Dialysis, and Transplantation111 Pancreas Transplantation: Should Blind Diabetics Be Excluded?120 Arthritis and Diabetes: A Common Association134 Diabetes and Yeast Infections 143 Hypoglycemia and How to Deal With It 145 Diabetic Peripheral Neuropathy 155 Diabetic Gastroparesis 159 Diabetes and Men's Sexual Health 161 Medications 167 External Mechanical Devices 169 Surgical Treatments 170 Companies That Market Impotence Therapy Systems 173 Resource List of Information and Services 174 Cardiovascular Health: Bypass May Be Better for Your Client 175 Diabetic Ketoacidosis 179 Necrobiosis Lipoidica Diabeticorum 181 PART FOUR: EMPLOYMENT ISSUES 183 Diabetes and the IWRP 183 Blind Diabetics at Work 185 The Use of Braille by Blind Diabetics 187 Health Insurance 189 Scleral Shells 190 PART FIVE: DEALING WITH THE EMOTIONAL ASPECTS OF DIABETES 193 The Emotional Side 193 Loss of Independence 197 The Cure 198 How I Went Blind...and Then What 199 My Transformation 206 APPENDIX: LIST OF RESOURCES 209 SUGGESTED READINGS 227 SERVING INDIVIDUALS WITH DIABETES WHO ARE BLIND OR VISUALLY IMPAIRED: A Resource Guide for Vocational Rehabilitation Counselors INTRODUCTION In a publication like this, both economy and precision are essential, particularly as persons from outside specialized disciplines encounter "terms of art" within those fields. The editors of this monograph have therefore attempted to use terminology which bears some explanation at the outset to avoid confusing or misleading the reader. Without categorically adopting Humpty-Dumpty's approach that a word means what we say it means, we have attempted to use a few terms in a specific way for this publication: Blind is used here to cover a wide range of visual impairments that necessitate use of alternative techniques to the usual visual ones for vocational and daily living activities. For our purpose, it includes those who are (a) legally blind according to the Social Security Administration's definition (central visual acuity in the better eye with best correction of 20/200 or less or a limitation in the visual field which subtends an angle of 20 degrees or less [tunnel vision]); (b) visually impaired (commonly describing, for example, a central acuity ranging from 20/70 to 20/200); and (c) those whose visual limitation necessitates use of some combination of the alternative techniques of blindness and sighted techniques in order to function efficiently, regardless of tested visual acuity or field. The rationale for extending the term to cover all of these groups is the need to address the mix of clients which the readers of this publication may find themselves serving since state agencies and even separate agencies for the blind may, under their respective state enabling statutes, find themselves serving persons from any of these groups. Secondly, in the interest of economy, we have chosen to use references to "clients," "individuals," "persons," or "people" to refer in this specialized context to clients of state rehabilitation agencies who are blind (as defined above) and who have a form of diabetes. Such references will be clear from the context or else clarified in the text. This limited usage seems reasonable given the intended audience, and it will certainly preserve the patience of those readers with limited time for reading. One more caveat is in order. The information and advice contained in this publication is intended to serve educational purposes and is not intended to take the place of personal instruction provided by a person's doctor or health care team. Clients should discuss any changes in treatment with appropriate health care professionals. With this fact in mind, the editors and contributors hope the material will shed light on a number of issues surrounding diabetes, dispel some of the mythology and misinformation about the condition, and serve as a stimulus to further research. Finally, where reviewers wished to make observations about articles written by others, they appear as footnotes at the end of each article. This seemed the fairest method of sharing those comments without violating the integrity of authors' contributions. The National Federation of the Blind (NFB) is pleased to produce this monograph in partnership with the Rehabilitation Research and Training Center (RRTC) on Blindness and Low Vision at Mississippi State University. A central part of the mission of both organizations is to serve people who are blind by providing sound and helpful information on all aspects of blindness and services to blind persons. This project is an outgrowth of our commitment to do so. Final editing was done by RRTC staff in conjunction with NFB staff. This work grew out of a realization that, although there are many specialized texts of high quality available to the diabetes professional, there has long been need for reference material on "the diabetes experience," written to reflect the accomplishments of diabetics. With the increasing complexity of health care comes a strong temptation to specialize and compartmentalize--and consequently to dismiss as "unscientific"--the patient's personal experience with the condition. "Us and them" thinking is usually counterproductive, but much more so when the clients's compliance with best medical knowledge is critical to the preservation of health. Passage of the Americans with Disabilities Act in 1990, which defined both blindness and diabetes as "disabilities," has only heightened the need for understanding of both in the population at large. Recognizing that learning about the condition is the key to successful self- management, many diabetics study extensively, becoming well-versed in the specifics of the condition. However, many rehabilitation professionals (both counselors and teachers) lack personal connection to the condition, and to them and their clients our book is addressed. Diabetes carries its own special baggage, and more so when coupled with vision loss. Diabetic retinopathy runs the gamut from almost undetectable "background" retinopathy, through "fluctuating vision" (a condition in which sight may change from functional to non-functional, and perhaps back again, within a few hours), to permanent and total loss of sight. Through all of this the daily tasks of self-management (which many carried out for years before losing their sight) must go on. And they do go on, as the following articles detail. Thanks to some fine pieces of adaptive equipment and their own (too often underestimated) abilities, your diabetic clients are fully capable of independently self-managing their condition. Having cleared that hurdle, they are productive members of society, fully capable of participation in the mainstream. The old ideas that self- management was a straightforward mathematical equation and that diabetes complications were proof of personal failure are being discarded in the face of the truth. What is needed to advance this new and positive approach is a two-pronged attack: Mastery of the equipment and techniques that enable diabetics to manage their condition safely and efficiently and fostering of a positive attitude towards their abilities and capabilities. For if members of a particular group are taught to believe they can't do very much, how many individual members will defy their lessons? The instructor who communicates a positive attitude inspires clients to incorporate the same into their vocational and life-planning goals, and to achieve to their true capacities. The old stereotypes are wrong (they were wrong when they first appeared back in the Middle Ages!). Much of the material included in this book previously appeared as articles in Voice of the Diabetic, the free quarterly newsmagazine published by the Diabetes Action Network of the NFB. All were prepared by or for the Network. In 1985, moved by the facts that diabetes is the leading cause of new blindness in the U.S. and all diabetics are at risk of ramifications, members of the NFB founded the Diabetes Action Network. Furthering its goal of providing mutual support and information for individuals with diabetes, the Network began publication of the Voice in 1986. Voice articles are written not just by doctors and diabetes professionals, but also by Network members, people with personal experience, encouragement, and insight to share. Unlike the doomsayers who occasionally have dominated the field, the Voice is always upbeat and positive, helping to show persons with diabetes who are blind, those losing vision, and those facing ramifications that they are not alone and regardless of complications, they do have options. The Voice is the largest publication in the blindness and diabetes field, and the largest diabetes publication offered in accessible format (15/16 i.p.s. audiocassette). It is offered free on request. For more information, readers are invited to contact the National Federation of the Blind, 1800 Johnson Street, Baltimore, MD 21230; telephone (410) 659-9314; Fax (410) 685-5653. PART ONE: INTRODUCTION TO DIABETES Myths About Diabetes: What You Tell Your Clients NFB Diabetes Action Network It is human nature to fear the unknown. Tribesmen told stories of trolls and demons; early sailors kept watch for sea monsters. We're still afraid of not knowing--and we tell a lot of tall tales about diabetes! Scary stories fill a void when we don't know the truth, and they disappear when the truth is known. Here are a few myths about diabetes and how you might approach clients with the facts which dispel them. "I got it from eating sugar." Overindulging in sugar isn't good for anyone. Usually the preceding statement means sweets, which also have LOTS OF FAT, so the end result can be a serious weight problem, not to mention extra trips to the dentist. People who eat quantities of cakes and ice cream often miss essential nutrients found in other foods...but their bad eating habits do not cause diabetes.In fact, doctors and researchers are still unsure what causes diabetes. There appear to be a number of factors, some of them genetic. Once diabetes appears, gorging on sugar is a bad idea--but it DOESN'T cause diabetes. "I'm gonna' go blind." Although it is true that all diabetics are at risk for ramifications of diabetes, such as blindness, heart problems, and renal disease, it is equally true that only a small percentage actually experience the full force of such complications. The Diabetes Control and Complications Trial proved that the better the blood sugar control, the less the likelihood of ramifications. Anyone already experiencing ramifications of diabetes needs to achieve and maintain the tightest possible control to minimize their further progression. "My child will be diabetic too." Children and close relatives of diabetics are considered at increased risk to develop the disease. Children, brothers and sisters, and cousins of persons diagnosed with diabetes should all be periodically checked. Current statistics suggest that the child of a parent with diabetes may have, at worst, a 1 in 4 chance of developing it. It is important to remember that diabetes sometimes skips a generation or two, so having a grandparent with diabetes may be significant. "Since I don't have to inject, it isn't serious." A surprising number of people still believe this myth. Non Insulin-Dependent Diabetes Mellitus (type II diabetes) can produce destructively high blood glucose levels if it is not kept under control. Type II diabetes often grows more severe with time, so a person who starts with "a touch of sugar" will probably need to progress to diet- and exercise-based blood sugar control, then to oral diabetes medications. Many veteran type II diabetics find their "oral meds" have become ineffective with time, and they need to switch to insulin injections to maintain effective diabetes control. Type II is serious, and if one's numbers "aren't that bad," they may merely indicate the early stages of the disease. "I'm losing my sight; my kidneys are going; its all over for me!" The best answer for this antiquated myth is to look at the evidence. Having diabetes is not pleasant, but its ramifications do not present a bar to continued participation in the mainstream of life. With mastery of the proper skills and possession of the proper adaptive equipment, individuals with diabetes can continue to live full lives, even with severe ramifications. Many members of the Diabetes Action Network of the NFB are living examples of just how much is possible once one rejects the idea that blindness, kidney failure, or neuropathy means inability. Diabetes doesn't mean a quick death either. Many diabetics, even insulin- dependent, live well into old age. With recent improvements in diabetes care, younger individuals with diabetes should do even better. "I've gotta' eat that horrible diabetic diet!" Far from horrible, unless a person is a confirmed junk-food addict, today's diabetic meal plan is a well- balanced, sensible presentation that would be healthful for anyone to adopt, with or without diabetes. And gone are the days when anything with sugar was "off limits." Under today's system, all carbohydrates are counted equally. If those with diabetes want to eat things rich in carbohydrates, they "pay for it" by cutting an equivalent amount of carbohydrates from somewhere else in their diets. There is a lot of flexibility, and the rest is just a matter of care and moderation. "I don't need that meter; I can tell if I'm too high or too low." This myth is dangerous because it's sometimes true. Sometimes people can sense a "low" without a meter and take appropriate action. Sometimes they can't, and they wind up in the ambulance. Hyperglycemia is harder to detect by "feel," and either way, making do without regular blood glucose tests is like flying without a parachute: it is a gamble. Diabetics are wise to learn their bodies' signals that they are approaching trouble, but it is best to use the glucose monitor to be sure. "I can't exercise; the stress would make things worse." Physical exercise burns blood glucose, pulling one's numbers down, and decreasing the need for insulin or oral medications. Care is required to make sure one does not drop dangerously low or incur other complications like foot irritations (especially if there is decreased sensation in the feet), but such care is just an expansion of what one should be doing already. The benefits of a carefully planned and faithfully followed exercise program far outweigh the perils. Your client should discuss exercise plans and any adjustment in medications with a doctor first. One might consult with an exercise physiologist as well who has experience in the diabetes field. The above comprise just a sample of the myths of diabetes. There are hundreds--some scary, some dangerously rose-colored. There is no substitute for knowing the truth. Blind diabetics should pay attention to their bodies and keep ahead of what their diabetes is doing--there is no room for surprises. Consulting with a doctor or diabetes educator is a good way to check. What is Diabetes Mellitus?--Arturo Rolla, M.D. and Joan Stout Note: Arturo Rolla, M.D., is an endocrinologist at New England Deaconess Hospital and an associate clinical professor of medicine at Harvard Medical School. Joan Stout is a professional writer and editor. Diabetes is a metabolic disorder that occurs when the body cannot properly use glucose (a form of sugar), the body's main source of fuel. During digestion, most of the carbohydrates we eat are converted to glucose, which passes into the bloodstream where it is available to the cells for use as energy. Eighty percent of the glucose in the blood goes to the muscles. But in order for glucose to enter the cells and be used as energy, insulin, a hormone secreted in the islets of the pancreas, must be present. Without insulin, the body cannot convert food into energy. The cells that produce insulin are called beta cells. They are normally stimulated to produce insulin by the rising level of blood glucose. In that way, the body has a system by which the right amount of insulin is secreted for the right amount of glucose present. Once the glucose has entered the cells, the blood glucose level decreases, and the beta cells stop secreting insulin. Q: What are the different types of diabetes? A: There are basically two types of diabetes. In one type, the beta cells are destroyed by the immune system and no longer secrete insulin. This is called type I diabetes and is characterized by an absolute deficit of insulin. The other type, called type II diabetes, is due to "insulin resistance," an initial resistance of the body's cells to obey the orders of insulin. To overcome this resistance, the beta cells secrete more insulin, and glucose is eventually forced into the cells. Glucose is maintained within normal limits, but at the expense of increased insulin secretion by the beta cells. After many years of such increased secretion, the beta cells become "tired" from working overtime, and the fatigue process begins. This fatigue tends to be progressive and over time the compensation of insulin resistance disappears. At that point, blood glucose levels start going up. Type I diabetes is also called insulin-dependent diabetes (IDDM) and was previously known as juvenile diabetes. We now recognize that type I can appear at any age, even though it is most often diagnosed before the age of 40. Type I is an autoimmune disease, which means that the body's defense against infection, the immune system, attacks part of the body. In type I, the immune system attacks the beta cells in the islets of the pancreas and destroys them. The pancreas then produces very little or no insulin, and the patient needs daily insulin injections to live. Symptoms typically appear over a brief period of time, although the destruction of the beta cells may occur over a period of months or years. These symptoms include: Increased thirst and urination, weight loss despite increased hunger and food intake, blurred vision, extreme tiredness, and itching. Coma and death can follow if diabetes is not diagnosed and treated. Type II diabetes is also called noninsulin-dependent diabetes (NIDDM) and was previously known as adult-onset diabetes. Type II usually occurs in adults over 40, but it can appear at a much earlier age, including early adolescence (maturity-onset diabetes of the young, MODY). About 80% of people diagnosed with type II diabetes are overweight. In type II, the pancreas produces insulin, but the body is unable to effectively use it. Insulin resistance is common, and the patient may have large amounts of insulin present in the bloodstream. Symptoms of type II typically develop gradually, over a period of months or years. Symptoms include: Increased thirst, increased urination (especially at night), fatigue, weight loss, blurred vision, frequent infections, and slow healing of sores. Because type II can be present for many years before diagnosis, symptoms may include complications of diabetes, such as heart disease, kidney disease, nerve problems, or vision problems. Q: What causes type I diabetes? A: At this point, we do not know why the body's immune system attacks the beta cells and destroys them. The cause may be a virus, an exposure to cow's milk at an early age, genetics, or more likely a combination of factors. Doctors can determine who is at a high risk of developing type I by testing their blood for antibodies against the islets in the pancreas and by testing their capacity to secrete insulin. The hope is to prevent further beta cell destruction. Q: What causes type II diabetes? A: Most people who develop type II diabetes are overweight. Overweight people have excess adipose tissue in the body, and the extra fat increases their resistance to insulin, not only in the fat tissues but also in all the other cells. Diabetes is not caused by eating too much sugar, but being overweight increases the chances of developing type II diabetes. Q: Who gets diabetes? A: The following people have an increased risk for developing diabetes: - people with family members who have diabetes, - people who are overweight, - African Americans, - Native Americans, and - Hispanics. These risk factors are much higher for type II than for type I, although a genetic component is present for both types. For type II diabetes, risk factors include older age, increased weight, decreased level of physical activity, overfeeding or too rich diet, and family history of diabetes. Adults are much more likely to get type II diabetes than are children, whereas type I tends to appear more frequently in children. Q: How many people have diabetes? A: In 1995, the estimated prevalence of diabetes in the United States was 16 million people, about half of them not yet diagnosed. For type I diabetes, the estimate of diagnosed cases ranges up to 800,000. About 30,000 new cases of type I are diagnosed each year. For type II diabetes, the 1993 estimate was 7 million to 7.5 million diagnosed cases. About 595,000 new cases of type II are diagnosed each year. Approximately 4.2 million women and 3.6 million men have been diagnosed with diabetes. For children age 19 years or younger, the estimate is 100,000 cases. For adults age 65 years or older, the estimate is 3.2 million cases. Q: How is diabetes treated? A: Daily insulin injections are required to treat type I diabetes. Many people with type I take multiple injections daily. A regimen of three or more injections per day is called "tight control" or "intensive management." The insulin must be balanced properly with food intake and exercise (including regular daily activities). Frequent blood testing is performed by the patient to monitor blood sugar levels. This involves pricking a finger for a drop of blood, applying the blood to a test strip, and inserting the strip into a small machine that reads the strip and displays the approximate level of blood sugar. Type II is sometimes treated with diet and exercise only. Oral diabetes medications, which are not insulin, are also used. If these methods do not work, type II is treated with insulin. People with type II must also balance their exercise and food intake with their medication (whether oral medication or insulin). A weight loss diet is frequently a part of treatment with type II. Blood glucose testing by the patient is also an important part of treatment. Both type I and type II diabetes are best treated with a team approach, with the patient being the most important part of the team. The goal of treatment is to keep blood sugar levels as close to normal as possible to prevent long-term complications. Since most of the daily care is the responsibility of the person who has diabetes, patient education is imperative. Other team members should include a diabetes doctor (endocrinologist or diabetologist); specialists as necessary (ophthalmologist, podiatrist, etc.); a dietitian; and a diabetes educator. A 10-year study called the Diabetes Control and Complications Trial (DCCT) was completed in 1993. The study included over 1,400 people with type I diabetes and compared the results of intensive management with "standard" management. The participants who followed intensive management, keeping their blood sugar at lower levels, had significantly lower rates of eye, kidney, and nerve diseases than did the "standard management" group. Although the study focused only on type I diabetes, most doctors believe that people with type II will also benefit from keeping their blood sugar as close to normal as possible. Q: What are the complications of diabetes? A: Complications of both type I and type II include eye disease and blindness, heart disease, strokes, kidney disease and kidney failure, amputations, nerve damage, skin infections, and gum disease. Diabetes can also cause complications of pregnancy and congenital malformations. In 1992, diabetes contributed to at least 169,000 deaths. In 1993, diabetes was the seventh leading cause of death listed on death certificates in the United States. Q: How much does diabetes cost? A: In 1992, the total cost of diabetes in the United States was estimated at $92 billion. This includes $45 billion for direct medical costs (only those costs directly attributable to diabetes) and $47 billion for indirect costs such as disability, work loss, and premature deaths. Diabetic Eye Disease Prema Abraham, M.D. Dr. Abraham is director of vitreoretinal and retinovascular services at Black Hills Regional Eye Institute in Rapid City, South Dakota. Introduction Diabetes is a common medical problem which affects the body's ability to regulate blood sugar levels. Over a period of years, high blood sugar will damage small blood vessels in the body and often cause problems such as kidney failure, sensory abnormalities in the hands and feet, and eye problems. The focus of this section is to describe how diabetes affects vision, what specific factors contribute to visual loss, and the technological advances that are available today to evaluate and manage diabetic eye disease. Although in the worst cases, an individual may suffer permanent loss of vision in one or both eyes, it is important to remember that most people who carefully control their diabetes and get good eye care can prevent many of the visual complications of the disease. Diabetes is present in approximately 3% of Americans; however, individuals in special populations such as Native Americans and the elderly are much more likely to suffer from the disease. For example, nearly 50% of some Native American groups are affected, and among the nation's elderly, about 15% are affected. Because one form of diabetes (i.e., adult-onset or type II diabetes) may be present in a person for several years before the diagnosis is established, some of the preventable complications may already be in the early or moderate stages when the diagnosis is finally made and treatment initiated. What is Diabetes? Diabetes is much more than having an elevated blood sugar level. It is a complex endocrine disorder which can affect many aspects of the body's metabolism, changes in which can have detrimental effects on a variety of vital organs. Left unchecked, diabetes may result in complete kidney failure and require the use of hemodialysis. The disease also causes heart disease and is a potent risk factor for heart attacks. Nerve endings can also be severely damaged, leaving the patient with a painful burning sensation in the hands and feet or causing numbness in the same areas. This loss of sensation places the diabetic at increased risk of injury without being aware of the damage. The numbness, along with the detrimental effects that diabetes may have on the immune system, increase the risk of serious infection. Eye damage from diabetes may include any one or a combination of problems such as cataracts, glaucoma, loss of night vision, double vision, eye infections, fluctuating vision, and retinopathy--a broad category of problems affecting the retina. There are two categories of diabetes, one which often affects individuals at a younger age (type I) and the other which affects middle-aged and elderly adults (type II). Both types are associated with elevated blood sugars, but the complications of the disease may vary in severity and rate of onset and progression depending on the type. How Does the Eye Work? To understand how diabetes affects the eye, it is important to know how the normal eye functions. The eye works very much like a camera, with a focusing lens in the front and the film in the back. The retina plays the role of a camera's film, receiving the image of the object at which the camera is focused. The retina, which is actually a direct extension of brain tissue, transmits the visual information through the optic nerve to areas of the brain which process it into vision. In a camera, no matter how clear or strong the lens and how perfectly focused the image may be, if the film is not working well the camera will not take good pictures. Similarly, if the retina is diseased, vision will be impaired no matter how clear and strong the lens may be. Furthermore, if the space between the lens and the retina is obscured with blood or other material, vision will be impaired. When a diabetic goes to the ophthalmologist, the doctor looks carefully at the retina. With special instruments, the blood vessels which normally travel through the optic nerve can be viewed as they branch out and nourish the retina. One small but particularly important area of the retina called the macula, is sometimes referred to as the "sweet spot" of the retina. This "sweet spot" is the area responsible for detailed vision required for reading, driving, needle- threading, and other similarly detailed visual functions. The remainder of the retina is for side or peripheral vision and not useful for fine vision. In order to maintain meaningful vision for activities such as reading, it is essential that the macula remain healthy and unobstructed. If the macula does become damaged or covered with blood, the eye does not necessarily become blind. It is possible that the side vision will remain fully functional but reading and identification of faces will be extremely difficult or impossible. For example, it may be possible to perceive that someone is approaching, but without the "sweet spot", it will be impossible to identify that person visually. What is Retinopathy? Retinopathy is the general name given to diseases of the retina. In persons who have diabetes, it can take a variety of forms and may affect those with either type I or type II diabetes. Those with type I are usually free of retinopathy for the first 5 years after diagnosis because there is rarely much time between disease onset and diagnosis. On the other hand, because they may have had the disease for several years prior to diagnosis, those with type II may already have diabetic eye problems at the time of diagnosis or shortly thereafter. The principal problem of the retina caused by diabetes involves the very fine blood vessels which nourish the nerve tissue. High blood sugar causes these vessels to become damaged and then leak fluid and fatty material into the nerve tissue of the retina. The retina becomes swollen and does not function normally. This form of retinopathy is called background or non-proliferative retinopathy. The medical term for swelling is edema; when this process involves the "sweet spot" of the retina, it is called macular edema. Another more serious form of diabetic retinopathy is called proliferative retinopathy. Like the non-proliferative form, this form is initiated by high blood sugars over a period of years. However, in the proliferative form, the damage inflicted on the small retinal blood vessels results in impaired blood flow to the retinal tissue. Some vessels actually close off completely and deprive an area of the retina of much needed oxygen and other blood-borne nutrients. Consequently, the oxygen-deprived tissue sends out a signal which stimulates the growth of new blood vessels. Unfortunately, the new vessels are distinctly abnormal and are the source of many serious diabetic eye complications. How is Retinopathy Treated? As with many chronic conditions, the best management strategy is based on prevention. With diabetes this means careful and consistent blood sugar control. Equally important are frequent eye evaluations which may permit early detection and treatment of retinopathy. When the eye doctor examines the retina of a patient with diabetes and discovers evidence of retinopathy, the next step usually involves obtaining special photographs of the retinal blood vessels. This process, called fluorescein angiography, utilizes a fluorescent dye injected into an arm or hand vein which then circulates throughout the body. When this dye flows through the retinal blood vessels, a series of photographs can be taken with specialized camera equipment. The photos help locate areas of abnormal blood vessels and guide the treatment process. One straightforward method for managing leaking blood vessels is to seal them with a highly focused beam of laser energy. In effect, zapping leaking retinal vessels stops further leaking of material from the vessels, thereby limiting the detrimental effect on vision. When the angiogram identifies discrete areas of leaking vessels, the laser treatments can be confined to these specific areas. This is called focal treatment. When the leaking is not due to one or two specific areas, a broader treatment is required. When the problem of leaking vessels is widespread and excess fluid accumulates in the retinal tissue, it becomes necessary to apply laser treatment scattered over a larger area. This is called grid treatment because the laser spots are applied in a grid pattern. This method, like the focal treatment described above, is useful in the treatment of macular edema. In either situation, the goal of treatment is to stop the vessels damaged by diabetes from continuing to leak and to stop the progression of the visual impairment. Unfortunately, this treatment cannot restore vision that is already lost. The other, more serious form of diabetic retinopathy, proliferative retinopathy, is also treated with a laser. Whereas the treatments in the non-proliferative form are directed at sealing leaking vessels and not destroying tissue, the objective in the treatment of proliferative retinopathy is actually to destroy unhealthy, damaged retinal nerve tissue. To accomplish this, a deeper and larger laser burn is used. This may seem counterproductive to the preservation of vision but the outcome of these destructive treatments does ultimately minimize the cumulative loss of vision. Readers should remember it is the blood- and oxygen-deprived retinal tissue that stimulates the growth of abnormal vessels which never provide any benefit to the retina. Destroying the unhealthy retinal tissue eliminates the stimulus for the growth of new, abnormal vessels. These abnormal vessels are fragile and can bleed into the interior of the eye, obscuring vision. Patients with proliferative retinopathy may awaken in the morning with new floaters or other visual changes because of bleeding which occurred during the night. Because of rapid eye movements associated with dreaming, these individuals are particularly vulnerable to the breaking of the abnormal vessels during sleep. Treatment of proliferative retinopathy is accomplished by applying hundreds of destructive spots of laser across much of the peripheral retina. Even though there is relatively widespread treatment, there is very little, if any, sensation of fine visual loss because only the side-viewing retina is treated. Furthermore, the area of the retina being treated is already diseased due to diabetes. Patients may notice a reduction in side vision or night vision and difficulty with light/dark adaptation following this type of treatment. This treatment is called panretinal photocoagulation or PRP, and usually requires multiple treatment sessions to complete. As mentioned above, laser treatment of proliferative retinopathy is directed at preventing progression of vision loss and does not result in recovery of vision already lost. Today, new multi-wavelength lasers are available which permit the surgeon to select the most appropriate type of laser beam for the specific problem the patient may have. This flexibility helps the surgeon maximize the beneficial effects while minimizing the detrimental effects of laser treatment. Another complication of proliferative retinopathy is the formation of scar tissue in the eye associated with the growth of the abnormal vessels. As the scar tissue grows, it may pull on the retina and tear it off of the back of the eye. This is called a traction retinal detachment and can be quite severe. A traction retinal detachment may cause severe loss of vision, in some cases ultimately resulting in loss of the eye altogether. Panretinal photocoagulation, by destroying blood- and oxygen-deprived retinal tissue, reduces the stimulus for abnormal blood vessel growth and thereby limits the development of scar tissue. In turn, less scar tissue translates into reduced risk of retinal detachment. What Other Treatments are Available? In some cases, bleeding into the eye may occur despite laser treatment. If the amount of bleeding is significant, it can obscure vision. When this happens, the blood can be surgically removed in the operating room by a retinal surgeon. In addition to removing the blood from within the eye, this surgery has the added benefit of removing the entire jelly-like substance which normally occupies the space in the eye chamber. By removing this substance, the structure into which the abnormal vessels grow is eliminated and therefore, future abnormal growth is quite rare. The jelly-like substance is called the vitreous, and the procedure is called a vitrectomy. Vitrectomy combined with other microsurgical techniques is also the procedure used to repair traction retinal detachments. Conclusion Diabetic eye disease is an important cause of severe vision loss in patients under age 60. However, regular eye exams can detect problems in their early stages. Early detection means that treatment can be started before serious visual loss occurs. All patients with diabetes should have their eyes examined at least once each year, and individuals with more advanced disease may benefit from more frequent evaluations. These exams should be performed by an experienced eye care professional who will dilate the pupils with special eye drops so that the entire retina can be more easily viewed. If laser treatment or other surgery is required, one may then be referred to a retinal specialist. Through education and cooperation with medical and eye care professionals, the patient with diabetes can remain optimistic about successfully managing the disease and its ocular complications. A Note on "Brittle" Diabetes NFB Diabetes Action Network One of the most prominent features of diabetes is its uniqueness. No two diabetics respond in exactly the same way to food, insulin, or exercise; and no two individuals, even if they show the same test results, will suffer precisely the same ramifications. The disease is, by definition, unpredictable. Still, making allowance for surprises, we know the effects of more insulin, less insulin, more exercise, less exercise, more food, etc. For most people, most of the time, the "rules" work: "If I do this or do not do that, I can expect this result." But the rules do not seem to apply to some individuals, prompting use of the adjective "brittle" to describe their condition. The problem becomes separating the truly "brittle" from the non-compliant and the poorly controlled. Some authorities insist that if all diabetics diligently practiced "tight control" (as described by the DCCT), none would be "brittle." They are partially right; the numbers would go down, but some would remain. Some diabetics, even practicing tight control, find blood glucose level "overreacts" to minute changes in diet, exercise, and/or insulin. These individuals experience unpredictable rises and swoops in blood glucose within very short periods as the result of very small departures from schedule. Small changes "break" their control, and they are thus said to be "brittle." If a client practices tight control, complies with a schedule, and still experiences rapid, out-of-proportion blood glucose changes, he or she should talk to a doctor. In such cases, their diabetes may be "brittle," but their instabilities may be a sign of some other problem. PART TWO: SELF-MANAGEMENT New Dietary Guidelines for Diabetes Management Mimi Moore, MS, RD Ms. Moore, a registered dietitian, gave the keynote address at the 1995 annual conference of the Diabetes Action Network of the National Federation of the Blind, from which the following has been adapted. The conference took place on July 3, 1995 at the annual convention of the National Federation of the Blind in Chicago. Although it was directed to an audience of blind diabetics, the editors feel that rehabilitation professionals will definitely benefit from the information provided in this lively presentation. Diet is very important in the maintenance of quality of life. Progress in science has guided us in making the very best food choices in our daily menu planning. As the saying goes, "You are what you eat." Life span increases as we learn to eat more nutritiously. What About Diet and Diabetes? Research results have provided us with some new recommendations for diabetes care and management. Many of you have heard of the Diabetes Control and Complications Trial (DCCT). This was a 10-year project that involved 1,441 participants. Each volunteer was randomly assigned to one of two groups, the conventional treatment group or the intensive treatment group. After 9 years, the study was halted and results given: Complications of diabetes can be prevented or delayed with intensive management. One year ago, revised nutrition recommendations for diabetes management were issued and supported by the American Diabetes Association (ADA). The emphasis was placed on individualization of care. There is not just one standard plan of management for all type I and type II diabetics. What is Meant by Intensive Therapy? Modified care and management has developed through use of the health care team (nurse, dietitian, physician, pharmacist, counselor, and exercise physiologist may all be part of the team). This was one of the main factors in the success of the DCCT. Intensive therapy is now advised for optimal blood glucose control. Intensifying management means improving control by increasing daily blood glucose checks; using multiple injection therapy; and making continuous adjustments in the coordination of diet, exercise, and insulin or medication. Nutrition therapy is a necessary component in the daily plan for diabetes management. Long-term dietary goals include: * maintenance of near normal blood glucose levels; * achievement of optimal blood lipid levels; * providing adequate calories for reasonable weight maintenance, normal growth and development, pregnancy, and lactation; * prevention and treatment of acute and long-term nutrition-related complications (hypoglycemia, short-term illness, renal disease, hypertension, cardiac disease); and * improvement of overall health, incorporating guidelines, and nutrient recommendations for all healthy Americans. These goals are not accomplished by one single method of meal planning. Traditionally, the meal plan has been conveyed via the Food Exchange System, which provides a good basic foundation for understanding the nutritional principles of diabetes management. Variation in this method occurs with food choices made within each Food Exchange Group. Individualization depends on the amount and type of food eaten. In 1986, the ADA dietary guidelines recommended set nutrient proportions for nutrient composition of the diet: Up to 60% of daily total calories from carbohydrates, 12-20% of daily total calories from protein, and 30% or less of daily total calories from fat. The 1994 dietary guidelines recommend a shift in nutrient proportions. The distribution of carbohydrates and fat is based on the individual's treatment plan, with no mandatory percentages, and 10-20% of daily total calories from protein. The ADA position statement (published in Diabetes Care, May, 1994) follows research regarding blood sugar response to various sources and types of carbohydrates. The recommendation now states that the emphasis on carbohydrate intake should be on total amount versus type of carbohydrate. The two types of carbohydrate are simple (sugars) and complex (starches and fiber). In the past, we were all advised to avoid foods containing sugar or simple carbohydrates. Now, with scientific evidence for support, we have learned that it is acceptable to have sugar-containing foods as long as they are worked into the daily meal plan and not just added. This liberalization of guidelines has allowed much greater flexibility in day-to-day meal planning. How Do We Carry Out These Recommendations and Implement Intensified Therapy? The changes in carbohydrates and dietary guidelines coincide with recommendations for intensive therapy. Continual adjustment is the name of the game--adjusting food to insulin and insulin to food based on blood glucose levels. Greater lifestyle flexibility is an outcome. One is able to eat a meal or exercise "off schedule." Carbohydrate-counting has become a popular method in response to modified therapy. What is Carbohydrate-Counting? The focus is on the nutrient carbohydrate because it has the greatest impact on blood glucose levels. The other two energy-yielding nutrients, protein and fat, do not affect blood glucose levels to the same extent. Therefore, attention is placed on the food groups that contain carbohydrates. All foods are made up of a combination of six nutrients: carbohydrates, protein, fat, water, vitamins, and minerals. In turn, all foods are categorized into one of six groups: starches, meats, vegetables, fruit, milk, and fat. Because starch, milk, and fruit are the main carbohydrate-containing groups, they become the focus of meal planning. One Food Exchange portion from each of these food groups equals one carbohydrate serving (15 grams carbohydrate = one carbohydrate serving). This is where knowledge of the Food Exchange System is helpful. A person with diabetes can use the Food Exchange portions for reference. A specific number of carbohydrate (CHO) servings are assigned to each meal in creating the meal plan. For instance, three CHO servings at breakfast, four CHO servings at lunch, and six CHO servings at dinner may be one person's meal plan. Individualization is key. Every individual's meal plan will be different depending on preferences. One person may eat two fruit portions and one starch for three CHO servings. Another person may eat two starch portions and one milk for three CHO servings. Suppose you wanted a slice of cake. The food label on a packaged cake says 45 grams carbohydrate per slice. This would equal three CHO servings. Since the focus is on carbohydrate-containing foods, meat and fat are not counted for CHO servings. But one should not get carried away with portion amounts on these foods! Guidelines are given individually for these food groups. No restrictions are placed on moderate consumption of vegetables. If one eats large amounts of vegetables, they need to be counted. Three vegetable Food Exchange portions equal one CHO serving. How Does All This Fit Into the Total Management Routine? This is where the health care team is needed. Insulin doses are set for the usual carbohydrate serving meal plan. If more carbohydrate than the base plan is desired, more insulin is taken. If less carbohydrate than the base plan is desired, less insulin is taken. Each person's insulin adjustment dose is based on blood glucose values. It takes weeks of testing, record-keeping, and communication with the health care team to establish the appropriate regimen. I have gone into detail about carbohydrate-counting because it is the method that now seems best matched to intensive insulin therapy. The key is to find a system or routine best suited to a person's lifestyle and preferences, making it easy to maintain optimal blood glucose control. As a philosopher once said, "Man should eat to live, not live to eat." It's good to know that those times when one wants to live to eat, it is OK. It just takes a few minor adjustments in routine. Following are questions the audience asked Ms. Moore at the completion of her presentation. They are included here because the answers provide some information useful to the intended audience of this publication. Q: When you use the term "intensive insulin therapy," what does it mean? Is there a minimum number of shots per day? A: As per the DCCT, the term means three or more insulin injections per day to be counted as "multiple injection therapy." "Intensifying insulin therapy" could mean going to two shots per day if you currently take only one--then you are "intensifying" it. But when we use the term "intensive insulin therapy," we are talking about pump therapy (where you have continuous injection) or three or more shots per day, and blood glucose monitoring four or more times per day. Q: What about a type II on just oral medications? What does "intensive therapy" mean for me? A: As far as the recommendations, these were made for type I diabetics. But we're assuming that they can also be carried over to type IIs because you still need to test frequently to know where your blood sugars are. That's important. You can still adjust your carbohydrate servings, so that's all a part of it. As far as working with your medication, that you need to do with your physician. However, you can still carry through many components of the intensive therapy. It's just that you don't have any insulin to adjust. Q: Does the ADA have a "recommended renal diet," or is that something to be developed individually between me and my doctor? A: That's a good question. It's still individualized, but the recommendation that protein be decreased is not as severe as it was in the past. Today, we're saying, for a renal diet, the target should be about 0.8 grams of protein per kilogram of body weight, which is about the American adult recommended amount. Q: In many situations, people don't get the kind of dietary advice they need, probably because they're on some sort of state Medicaid program. What do you recommend? A: As far as being able to obtain diet counseling with Medicaid, it is difficult. You could try contacting the ADA as a start. Find out what programs are available in your area. Which are hospital-based? As far as reimbursement, that changes constantly and varies from state to state as to item and amount reimbursed. For the best results, we need a team approach. We're seeing that education does help curb costs in the long-term. If you're able to take care of yourself, you're able to stay out of the hospital. We need to have more teams to provide better health care. The public health department usually has access to at least one professional, perhaps a nurse educator. There should be a dietitian too. Check with the public health department in your city--that would be a good place to start. Q: If a check of blood sugar shows it's high, is there any formula for how much insulin physicians think you should take, according to the amount your blood sugar is over the standard? A: There is no standard formula because it all depends on how you as an individual respond. You might come down a given percent per unit injected, but someone else might need less or more. It's very individualized. You would have to set up a program--establish some kind of scale--in order to know how much insulin to take when your blood sugar is past a certain level. Everybody responds differently, and there is no set answer. And if you as an individual are elevated, perhaps 180, not quite 200 (see below for norms), what you may need is exercise or dietary adjustment; eating less at mealtimes. This holds true for special occasions--times you wish to eat more--as well. Q: What are the "norms" for blood sugar levels? What are the current recommendations? A: For people without diabetes, the acceptable range is 60 to 110 mg/dl. For someone with diabetes, we recommend aiming for 70 to 120. Of course, the best range for you depends on your condition. You need to be careful of hypoglycemia, especially if you have cardiac complications. Depending on the individual person, what complications they have, and how active they are, the optimum range may change. With children and infants, it is very hard to detect hypoglycemia, so the ranges may be a little higher. Intensive insulin therapy is not recommended for children with diabetes under 2 years of age. Q: Those of us with diabetes who are on dialysis face two contrary sets of dietary requirements. When one says, "You can eat this," the other says, "You can't." It is hard to establish an individualized diet plan. Can you explain? A: The diabetic on dialysis faces the most frustrating of diets because there are so many restrictions on it. You can feel there's nothing you're allowed to eat. There is controversy about what the standards should be. Should protein be kept low? High? No animal protein? Plant only? How many calories? Until we know more about how diet directly impacts renal disease, there will continue to be controversy. You look at the "macro nutrients"--carbohydrates, proteins, and fat--but you're also looking at minerals too. You've got to go into it in depth and pay close attention to your food types and amounts. A higher incidence of hypoglycemia is associated with renal disease, and you have to figure that factor into the diet too. Traditionally, health professionals have said, "Treat hypoglycemia with orange juice," but then somebody comes along and says, "No more!", and you have to find something new. That's where it helps to work with the same dietitian, who knows you as an individual, long- term. But do recognize that as renal disease progresses, you will have to make changes in your diet. Q: You've talked about minerals. Why don't food labels mention potassium or phosphorous content? Where can I get that information? A: There is a book you can buy entitled, Food Values of Portions Commonly Used, 16th ed., 1994, by Bowes and Church. This guide lists all food products with their analysis. If you're on dialysis, you need your own copy. But the food labels don't have that information because the average American doesn't need it. Another source for the detailed materials you need is available from most dietitians working with renal issues. This is the information commonly called a "renal packet." It is a very difficult diet to follow because there are so many factors you need to coordinate. You may feel you have to follow it exactly, but really you don't. Just work toward some sort of balance each day. [Editor's Note: The NFB Materials Center in Baltimore has the ADA Food Exchange Lists in Braille or on cassette.] Q: Can anybody use an insulin pump? What are its advantages and disadvantages? How does one deal with the risk of infection at the injection site? For diabetics with cardiovascular problems, is an insulin pump a possibility? A: It should be an option, but the issue needs to be evaluated individually. In some cases, like pregnancy, the insulin pump is recommended because it does a better job of coping with the ups and downs and will provide tighter control. As far as the risk of infection at the pump site, you minimize that by frequent changing of your tubing, your catheter, perhaps more often than the recommended time. Some people are allergic to the adhesive tape used to attach the tubing, but that's another problem. If you are using the pump, you will need to test your blood sugars four to six times per day minimum. This is important. If you want the pump, you need to commit long-term to the testing. Some people don't like the feel of the pump at night. The insulin pump may not be for everybody. It is individually evaluated. It is one of the recommended ways to institute intensive insulin therapy. Q: If you are overweight, is there a safe way to lose weight while controlling both diet and insulin? Should I just go to my dietitian for that? Are there other resources? A: Start with your dietitian. The dietitian may connect you with a counselor who'll help you work on behavior changes, not just food changes. Any changes of this type, you'll want to be long-term. Plan on going "multistep," one step at a time. Set small goals. Lose 4 or 5 pounds at a time--this amount is advantageous! Q: What if I want some ice cream? How would I "count" it as a carbohydrate? A: Are you talking about regular or "lite" ice cream? We no longer have just the conventional, high-fat type out there. Today there are also ice milks, frozen yogurts, sorbets, and sherbet. All have varying degrees of fat. If you really want that premium ice cream, what will you leave out of your diet to balance all that fat? You have to exchange! For one half cup, you have to exchange one bread but also two or three fat servings. Somewhere in your meal plan you can eat less meat, so as to leave out some of that fat. If you want more for your dollar, have the sorbet instead, and leave off just a few pieces of bread. Sorbet is nonfat. And remember: Just because something is "fat-free" doesn't mean it is calorie-free or sugar-free! Even ice cream made with NutraSweet or sorbitol can be high in carbohydrate, especially if it has a milk base. Still another trap is "no sugar added", or "sugar-free". They contain carbohydrates because fruit has been added for sweetening. Sometimes the fruit-sweetened product contains more carbohydrates than does the sugar-sweetened one. Look at the total carbohydrate content on the label. Q: When I look at a box of cereal, I see listed: "Total carbohydrates, complex sugars, dietary fiber, and other carbohydrates." With the new guidelines, what should I be looking at? A: Cereal is a hard product to work with. There is so much variability, and the different cereals have different serving sizes. One half cup of one cereal may contain the same amount of carbohydrates as one third cup of another. I would start by looking at the serving size. If I want to eat a big bowlful, I'll look for a flake cereal. Next, I would look at fiber content. If I want high fiber, I will choose bran, wheat, or oats because the corn flakes or rice krispies don't have a high fiber content. As far as the new recommendations, what we're saying is that the total amount of carbohydrate is what matters more than what kind. If you want frosted sugar flakes, go for it, but then look at what your total carbohydrate serving is. That is more important to focus on than the sugar. If there are 36 grams of carbohydrates in a one half cup portion, that's going to count for two servings of carbohydrates. Look at the total amount of carbohydrates per serving. I would also look at fiber content and serving size. Q: How do I know if there's sugar in my food? A: Dextrose, fructose, lactose, corn syrup, and honey. . . are all sugars. If it ends in "--ose," it's a sugar. All simple sugars have the same calorie content per gram. With the old recommendations, when we used to watch out for different types of sugars, we had so much more to sift through. Was it corn syrup or was it fructose? Now, with the new recommendations, we are saying the type of sugar doesn't matter--you need to look at the total amount. There may be corn syrup in one product, fructose in another, but 15 grams of carbohydrate will react the same, no matter what form it takes. Q: How much carbohydrate per day should a person have? And what kind? If too much of the total comes from sugar, won't that burn off quickly and cause reactions? A: We used to say that up to 60% of a person's total caloric intake should come from carbohydrates. Now, we look at the individual. There are a lot of "if's" about total amount. When you're looking at carbohydrate intake, it doesn't matter about the source. If you have 30 grams, as far as its impact on your blood sugar, it doesn't matter whether it comes from sugar or starch. If you eat a mixed, balanced meal and stay on your program, you are at no greater risk for reactions than before. In fact, compared to fats and proteins, carbohydrates are the fastest to be metabolized. Q: Can you talk about sodium? How much should we have per day? A: As you eat more salt, you crave more salt. The average American probably consumes 6,000 mg per day. We recommend that a healthy American consume 2,400 to 3,000 mg of sodium per day; 2,400 mg, a "low sodium diet," is what diabetics should aim for. The more processed foods you eat, the more salt you are consuming. Convenience foods, fast foods, or anything processed usually has salt or sugar added. These alone can probably take you to the 6,000 mg mark. Q: I've been told intensive insulin therapy won't work for me because I have "hypoglycemia unawareness." Is that right? A: You have to do what is appropriate and safe for you. What we call "full-blown intensive therapy," with its increased risk of hypoglycemic episodes, may not be appropriate in your case. Perhaps you can intensify, improve your control, without going as far. Keep those blood sugars under the best possible control. [Editor's Note: One reviewer noted that if one is hypertensive, the goal should be less than 2,400 mg/day.] Review of Oral Diabetes Medications Peter J. Nebergall, Ph.D. Currently, there are an estimated 16 million diabetics in the United States. Perhaps 10% are insulin-dependent; the rest have type II diabetes, controlling their condition with diet, exercise, and oral medications. Oral medications are not insulin pills; rather, four classes of drugs designed to improve the body's utilization of what insulin is still present. These are: the sulfonylureas, metformin, troglitazone, and acarbose. Most "diabetes pills" are sulfonylureas, a class of chemicals that stimulate the pancreas to produce more insulin, effectively lowering blood glucose levels. Type II diabetics, those who need better management than diet and exercise can provide, often turn to these medications: tolbutamide, chlorpropamide, tolazamide, glyburide, glipizide, and new glimepiride for effective self-management. The sulfonylureas are effective, but only so long as the pancreas maintains some of its insulin-making capacity. But the sulfonylureas grow ever less effective with the passage of time. They drive the failing pancreas to greater effort, but the patient may well require ever-increasing doses. At some point, no further increase in medication will be effective; the pancreas isn't doing its job, and the patient needs to start injecting insulin. When the islet cells of the pancreas stop making sufficient insulin, insulin must be injected. Metformin, the second of the oral diabetes medications, works to raise the body's sensitivity to its own insulin. Used for decades in Europe, it can be prescribed alone or with the sulfonylureas. Metformin helps the type II diabetic make better use of the insulin he or she has left. Like the sulfonylureas, it becomes useless when the pancreas ceases producing adequate insulin. Troglitazone (trade name Rezulin, from Parke-Davis) is the third oral medication. Rezulin directly attacks the problem of insulin resistance, the increasing inability to process insulin, that is the chief component of type II diabetes. Intended for insulin-using type II diabetics, Rezulin enabled many to reduce volume and frequency of insulin injections. A few were able to discontinue insulin injection entirely. As with other oral diabetes medications, Rezulin's effectiveness depends on the presence of insulin. If sufficient insulin is not present, it must be injected, and Rezulin therapy will not change that fact. Where insulin supply rather than insulin resistance is the issue, Rezulin therapy offers nothing. As per who may benefit from use of this medication, Parke-Davis states: "Rezulin is indicated for use in patients with type II diabetes [who are] currently on insulin therapy, and whose hyperglycemia is inadequately controlled (HBA1C > 8.5%) despite insulin therapy of over 30 units per day, given as multiple injections...Rezulin should not be used in type I diabetes or for the treatment of diabetic ketoacidosis." Published data state that, although degree of renal insufficiency has no effect on Rezulin dosage, persons with hepatic (liver) disease should exercise caution. Other data suggest that, in premenopausal anovulatory women, Rezulin therapy may result in resumption of ovulation, and risk of pregnancy. There is further recommendation to proceed with caution if the individual is taking antirejection drugs such as cyclosporine or tacrolimus. Acarbose, the fourth of the current "oral meds", is completely different. A carbohydrase inhibitor, it temporarily suppresses the digestive enzymes which turn carbohydrates into glucose, slowing digestion and glucose absorption, keeping glucose levels more even. More a management tool than an antidote to insulin shortage, acarbose helps some diabetics keep a more constant blood glucose level. A "temperamental" medication, it has many side effects, and is less than universal in its utility. Problems Unfortunately, oral medications are often eventually insufficient. Many type II diabetics, diagnosed as young adults, at first successfully control their condition with diet and exercise but find they need the pills as they grow older. A number of years (and dosage increases) later, these diabetics have reached the limit of what oral medications can do for them; they are "maxed out" and really need to start injecting insulin. (Note: Regular, frequent blood glucose monitoring will show if they have reached the point where they should begin insulin therapy.) Here we encounter what the drug companies call "psychological insulin resistance." Some of this is plain old fear of sticking oneself with needles--nurtured by memories from our childhood in the bad old days of dull-as-nails reusable syringes. Many otherwise brave men would rather face a bayonet. But some doctors contribute to the problem when they don't make clear to the patient what the high glucose levels consequent to remaining on now- useless oral medications will bring in their wake. Yes, insulin is a powerful medication with risks if used incorrectly--but what in this world DOESN'T have risks if used incorrectly? The risks of remaining on oral diabetes medications once pancreatic insulin has diminished or ceased entirely are far greater than the risks of taking insulin. Oral Insulation Recent reports have mentioned insulin administration by mouth. The nature of insulin, and human digestion, make oral administration of insulin ineffective for blood glucose management--the insulin is digested before it can reach the bloodstream. The oral insulin administration here noted is taking place as part of several diabetic prevention trials. In one example, individuals considered at high risk for developing diabetes (but not yet "diabetic") are given oral insulin in an effort to misdirect their body's autoimmune attack on the Beta cells of the pancreas. Oral insulin, very "investigational" at this time, is not currently an option for blood glucose management. The Future Researchers at Johns Hopkins University are testing aminoguanidine, a new medication that may prevent or reduce some of the ramifications of diabetes. Swedish and American researchers are testing still another (APO A1 MILANO, covered in Voice Vol. 10, No. 4) that may help reduce diabetic heart disease. Aerosol spray insulin (for nasal administration) is being tested, and may someday supplant injection. Trental (pentoxifyline, from Hoechst Marion Roussel) is now available to treat "intermittent claudication", a painful circulatory ailment and frequent companion of peripheral neuropathy. ACE inhibitors, a class of blood pressure medications like Capoten (captopril), have been proven to deter and retard diabetic kidney complications. Other oral medications are constantly being evaluated for possible diabetic applications. Change is coming quickly. Diabetes and Exercise NFB Diabetes Action Network The image of the muscular athlete bathed in sweat, receiving the gold medal, is deceptive. Exercise, the pursuit of physical fitness, is not just for Olympians and professionals. The ancient Greek physician Hippocrates of Kos taught that a well-balanced lifestyle, with proper diet and appropriate exercise, was good therapy. But we seem to have lost something since that time. In our worship of convenience and pursuit of the latest technology, we forget that sometimes the old ways were good for people. Almost nobody gets enough exercise these days, but this deficit is more critical for the diabetic. Whether a person has insulin-dependent or non-insulin-dependent diabetes (IDDM or NIDDM, type I or type II), the end result is an oversupply of undigested glucose in the blood. This leads to hyperglycemia and opens the door to a whole host of serious, possibly life-threatening complications. Good diabetes control consists of getting blood glucose numbers down into the safe range and keeping them there. Exercise burns blood glucose. It is so effective that, coupled with proper diet, it forms the basis for certain types of diabetes therapy--the "diet and exercise" regimes followed by many type II diabetics. But exercise is not just for these people. No matter what type or degree of diabetes one has, regular physical exercise helps protect against hyperglycemia and ramifications, possibly lessening the need for insulin and/or oral medications. To the degree that it leads to weight loss and to maintenance of ideal weight, it can cut insulin resistance, leading to a reduction in the need for medication. It lowers blood cholesterol, reducing the risk of heart complications, and it cuts stress, keeping down the adrenalin level and improving diabetes control. Are these not reasons enough? Many people act as if exercise requires one to be fit before beginning it, as if the benefits must precede the act. "Oh, I can't do that; I'm not in shape." This belief is unfounded. Regardless of level of fitness, and regardless of ramifications, a program of regular physical exercise will be of benefit. Diabetics considering exercise programs should talk to their doctors; then they and their health care teams can plan realistic programs appropriate for them. What can those interested in getting started do? Although a lucky few get to work out in well-equipped gyms, they are not a requirement. Walking with dog or cane is high-quality exercise, and requires only a route to follow and the motivation to do so. Swimming provides a full-body workout while minimizing "impact," repetitive stress to the joints. Those in manual wheelchairs already know what a quality workout that device can provide. Electric wheelchairs merely require a little more creativity. A variety of home exercise equipment is available: treadmills, exercise bikes, rowing machines, and lifting machines. Individual circumstances may make one or more of these appropriate. Good exercise regimes are as varied as the people who follow them. A number of exercise physiologists have workout routines for people who must remain seated while exercising, and the health care team should be aware of them. Several are available as videocassettes. Exercise for those in chairs or after an amputation should present no more challenge than does getting dressed. There is one special consideration for those with diabetes who exercise. Since exercise burns glucose, hypoglycemia--low blood sugar--becomes a possibility. Diabetes is a balancing act between too high and too low, and exercise drops the numbers. One should take a glucose monitor along and test before starting exercise. Those results, and perhaps another test part way through a prolonged workout, can determine if one needs a snack. Testing again after exercise is advisable. As people learn their individual responses to specific types and amounts of exercise, they can better balance food and insulin intake. If they take along a source of quick sugar (glucose tablets, orange juice, lifesavers, cake-icing, etc.), they should be able to respond immediately to steep drops in blood glucose and keep themselves out of danger. They must remember to talk to their doctors about adjustment of insulin dosage. The ability to "feel" an oncoming insulin reaction varies from person to person. Some have little problem; when they feel "shaky," they have a snack. Others have greater or lesser degrees of "hypoglycemia unawareness," the inability to feel an oncoming "low." For these individuals, especially those who can't detect a low until they are almost unconscious, frequent glucose monitoring, rigid attention to schedule, and perhaps "buddy system" exercise can provide the needed margin of safety. There are other ways to improve safety. Wearing properly fitted athletic shoes of good quality, with appropriate athletic socks, should be prerequisite to walking or jogging. Afterwards, feet should be checked for blisters, bruises, or any other damage. Working out in public should include wearing appropriate medical identification and, if there is any doubt about visibility to passing drivers, wearing bright clothes. Exercisers should remember to give themselves warm-ups before and cool-downs after a workout. Having an exercise partner is a good idea--it also spurs motivation! The word exercise comes from an old Latin word meaning "training." The Romans knew that to have value, an exercise program had to be disciplined, with regular actions and on a regular schedule. Once people have established workout routines, they should follow them, conferring first with their health care teams and then setting realistic goals and sticking with them. [Editor's Note: One reviewer recommends that exercise not be undertaken when blood sugars are above 300 mg/dl. She also urges avoidance of exercises like weight-lifting and other jarring activities by those with retinopathies, nephropathy, and neuropathies, and discourages other forms of exercise resulting in rapid changes of blood pressure.] About Insulin NFB Diabetes Action Network Newly-diagnosed diabetics have many questions, like: What is this stuff I have to take? Is it a drug? Will it make me better so I don't have to take it anymore? What does it do? Why can't I just drink it or take a big shot once a month? And why are there so many different types? Will there ever be something better? Insulin is a hormone normally produced in sufficient amounts by the healthy pancreas. Its role is to facilitate the final digestion of glucose by the body. When insulin is lacking (as in the case of diabetes), glucose remains undigested in the blood. The body isn't being fed, and the high blood sugar can cause damage, the ramifications of diabetes. The two major types of diabetes (type I and type II, IDDM and NIDDM) are separated by presence of insulin. The pancreas of the type I patient has ceased producing insulin, and insulin must be injected. This injected insulin is a replacement and, barring the transplantation of a healthy pancreas, will need to be continued for life. The type II (NIDDM) patient has an impaired insulin supply. He or she doesn't have enough or has some difficulty assimilating it (insulin resistance) or experiences both conditions. Lifestyle and diet changes, along with oral medications, some of which stimulate the failing pancreas to produce more insulin, are used in treatment. Many individuals with type II diabetes find their insulin supply, already impaired, has lessened to the point at which they need to inject insulin. Insulin cannot be taken by mouth because it is digestible. Oral insulin would be obliterated in the stomach, long before it reached the bloodstream where it is needed. Once injected, it starts to work and is used up in a matter of hours. Depending on a number of factors, individuals vary insulin volume, type, and frequency to optimize blood glucose management. The existence of so many different formulations of insulin is partly intentional and partly an accident of history. Before insulin, individuals with diabetes just died. When the hormone became available in the 1920s, doctors realized patients' needs differed. As newer formulations of insulin became available, it was discovered that the best blood sugar control was achieved by use of a mix of insulins of different duration and time of onset (as described below). The earliest insulins were made from animals ("animal-source") but newer types are made "in the test tube" ("recombinant DNA origin"). The existence of so many different insulins helps the doctor tailor a dosage best for a specific individual. As new types of insulin are invented, they will help achieve an even better "fit." Many patients have specific questions about insulin use. Some of the most common are listed below: Q: How long before a meal should insulin be injected? A: With "Regular" insulin, it is recommended that one inject 30 minutes before meals. With Humalog (Eli Lilly & Company's trade name for quick-acting Lispro insulin analog), a 10-minute wait is sufficient. Insulin works far better when given sufficient time to do its job. Diabetes self-management requires keeping to the established schedule. Too much time or too little will cause problems. Waiting after injection for blood glucose to drop before starting to eat may limit the "glycemic excursion" (blood sugar rise) that follows a meal, but this approach means taking chances with possible hypoglycemia. Q: Do insulin absorption rates vary from one person to another? A: Yes. Some individuals get 16-20 hours out of an NPH/Lente shot, while others get 8-12 hours. One can experience day-to-day variation of up to 50% with the same dose. The same person, with the same dose and technique, may also see a day-to-day variation of 25-50% in time of insulin peak action. Q: Does exercise affect absorption? A: Yes. Exercise of a given muscle area after injection of insulin into that area will cause the insulin to be absorbed faster. Exercise, in general, burns up blood glucose, lessening the need for insulin to digest it and thus increasing the effect of injected insulin. Massage of the injection site after injection can help speed absorption. Q: Which injection technique makes the insulin work faster--Subcutaneous or Intramuscular? A: Intramuscular (IM) injection is faster. However, IM injection is not for regular use and has its risks. A doctor may use it in special situations, but day-to- day insulin injections should all be of the subcutaneous (SubQ) type. Mixing the two would inject another variable into diabetes control. Q: Does being a smoker change insulin absorption? A: Yes. Along with all the other damage it does, smoking decreases insulin absorption. Q: What are the absorption differences between insulin injection sites? A: The abdomen is the fastest, followed by arms and thighs (no data available on absorption rate in the buttocks). These differences may be used to prolong or speed up the effect of insulin for special circumstances, but it is best to keep injecting within one anatomical area for consistency in time of onset. Q: Does the speed with which I push the plunger of the syringe make any difference? A: No, velocity does not make any difference. Q: Does the angle of injection make any difference in absorption? A: The angle of injection (45 to 90 degrees) makes no difference, although some suggest that it may in cases of extreme obesity. Q: Does skinfold thickness affect absorption? A: The more fat present in the injection site, the slower the absorption. Q: I want to switch from animal-source to human insulin. Is there much difference? A: Human (recombinant DNA) insulins work faster than animal-source insulins of the same type, so you may need to recompute your daily doses. Talk to your doctor. Q: Why is "rolling" the insulin vial before drawing up a shot preferable to shaking it? A: The recommendation is to roll only the suspension insulins, NPH and Lente. There is no need to agitate Regular insulin. Shaking instead of rolling the vial would produce air bubbles. Q: How should insulin be stored? A: Insulin vials should be kept refrigerated until you are ready to start using them. Then they need to be kept in a cool place, away from extremes of temperature. Insulin is fragile, and exposure to extreme heat or freezing can destroy its efficacy. Q: How can I have a more flexible insulin regimen? A: Some people use sliding scales and algorithms for the regular dose, according to the amount of food taken at the time. Use of such a technique requires thorough familiarity with its details. Q: What is "buffered" insulin? A: Buffered Regular insulin is for use in insulin pumps. It acts just like other "R" insulins but contains a buffering agent to make it more stable for such use. Some people use conventional, unbuffered Regular in their pumps, but the manufacturers recommend use of the buffered variety. Q: What are the durations and peak times for the different insulin classes? A: The following chart is from Stop the Rollercoaster by Walsh and Roberts, with further data provided by Eli Lilly & Company. Note that times are approximate, and will vary between individuals. Many of the data in the body of the article were compiled by Arturo Rolla, M.D. of Harvard University, School of Medicine. . . . . . . . . . . . . . . Insulin Start Peak End Lows most likely @ Lispro 10 min 1 hr 4 hr 2-4 hr Regular 20 min 3-4 hr 8 hr 3-7 hr NPH 1.5 hr 4-10 hr 22 hr 6-13 hr Lente 2.5 hr 6-12 hr 24 hr 7-14 hr Ultralente 4 hr 10-18 hr 36 hr 10-22 hr Insulin Measurement Devices NFB Diabetes Action Network [Editor's Note: In articles which follow, including this one, the reader will be given information on specific aids and appliances. Although including this material, the editors intend no explicit or implicit endorsement of specific products.] Most diabetics, blind or sighted, want and need to achieve control-- independent self-management--of their diabetes. But if one cannot rely on vision to measure insulin accurately, he or she MUST have effective alternative techniques specifically designed for individuals with partial or complete vision loss. Many manufacturers have risen to the occasion; with the appropriate adaptive equipment, non-sighted self-management is a reality. Each person's abilities (and ramifications) vary, and it is important to remember that different devices best meet different needs. Some diabetics with fluctuating vision will find that at certain times of the day, they can rely on their vision to measure insulin accurately. At other times, their visual acuity may diminish, leaving them guessing at the dose of insulin or relying on sighted aid. The eye condition of a person with diabetes can change daily, making reliance on visual techniques unsafe. The following is a catalog of alternative devices for insulin measurement. Some are designed for those with partial sight. Others are intended for non-visual operation. A few are the simplest of home-made aids, designed by resourceful individuals with diabetes who are blind, some of whom are members of the Diabetes Action Network. [Note: Prices quoted do not include shipping charges.] Insulin Measurement Systems The Count-A-Dose: This insulin measuring device is manufactured by Jordan Medical Enterprises, 12555 Garden Grove Blvd., Suite 507, Garden Grove, CA 92643; telephone (800) 541-1193. Cassette instructions are supplied. Its suggested retail price is $49.95, although the NFB sells it for $40. (The reader will find information on vendors in the Appendix.) Designed for the Becton Dickinson (B-D) .5cc LoDose (50-unit) syringe, the Count-A-Dose holds two insulin vials and directs the syringe needle into the vials' rubber stoppers. The user can easily mix two different insulins, and the "T-bar" that holds the vials has clear and obvious tactile marks to aid insulin differentiation. Dose size is adjusted with the thumb-wheel, which clicks for each unit measured (clicks can be both heard and felt) up to 50 units. The device provides easy, reliable, and accurate non-sighted insulin measurement. [NOTE: The NFB Materials Center has a supply of the older, now discontinued, 1cc/100-unit Count-A-Dose. Operation is similar, but this device uses the B-D 100-unit syringe, and each click of the thumb-wheel draws 2 units. No audio instructions. Price is $40.] The Syringe Support: This device is manufactured in Canada by the Foundation Centre Louis-Hebert, 525 Boulevard Hamel Est, Aile J, Quebec City, (Quebec) Canada G1M 2S8; telephone (418) 529-6991. Instructions (standard print only) are bilingual. In the U.S., the Syringe Support may be purchased (cost $19.95) through Lighthouse Consumer Products, 36-02 Northern Blvd., Long Island City, NY 11101-1614; telephone (800) 829-0500. The Syringe Support uses only the B-D 1cc/100-unit disposable syringe and measures insulin in 1- or 2-unit increments, in doses of 1 to 100 units. To mix insulins with the device, it is necessary to remove vials from the apparatus. To draw a measured dose, the Syringe Support depends on a set screw with a raised flange, its only landmark, at 12 o'clock. One full turn draws 2 units. One half-turn draws a single unit. Although the dial lacks definite tactile or audio indicators, in most cases, any error would be fractional. Still, the Syringe Support performs best for those who must draw doses of greater than 10 units. The Load-Matic: This device is available for $49.95 from Palco Labs, Inc., 1595 Soquel Drive, Santa Cruz, CA 95065; telephone: (800) 346-4488. This device allows two different measurement increments: 10-unit and/or single units of insulin. It uses only 1cc/100-unit B-D syringes. Depressing the lever measures a 10-unit increment, and turning the dial one click measures a single unit. To mix insulins with the Load-Matic, as with the Syringe Support, it is necessary to remove and replace insulin vials from the device. Although an intriguing design, the Load-Matic features an overly complex operating drill, with many opportunities for user error. Ambiguous and incomplete instructions take a high degree of familiarity for granted and may confuse the inexperienced. Its 10-unit lever, if incompletely depressed, is capable of dispensing the unwary user an incorrect dose. The Load-Matic's cassette instructions tell the blind user to draw only about 700 units out of an insulin vial with the device since "this assures that you will never draw air into your syringe instead of insulin." The printed instructions lack this statement. The instructions make no provision for removing air bubbles from the syringe, which can easily be accomplished by drawing 4 or 5 units of insulin, reinjecting them into the vial three times, and drawing the full measured dose the fourth time. Insulin mixers need to do this only with their Regular insulin, the first they draw. Home-made Insulin Measurement Gauges The simplest insulin gauges are devices which allow the plunger on an insulin syringe to descend a set distance and no more. The distance corresponds to a measured dose of insulin; the gauge enables that dose to be reliably duplicated without sight. To draw a different dose, the user must use a different gauge and thus may need quite a collection. Gauges may be of a number of shapes (flat, corner-molding, tube, etc.) and can be constructed of many different materials (wood, plastic, metal, old credit cards, etc.), but most of them are rigid, flat, and several inches square. On one end of the gauge is an L-shaped notch. This L-notch fits on the plastic collar located between the flanges and the plunger of the insulin syringe. Further down the insulin gauge is the small slot where the plunger seats, once the correct dose for that particular gauge has been reached. An insulin gauge should be made to keep the slot very narrow to insure that when the plunger is seated in the slot, there is no play (which would allow a variation in the dose). The L-notch and the slot must both be on the same side of the insulin gauge. Although many people make their own insulin gauges out of all types of materials, commercial gauges are available. Meditec, Inc., 3322 S. Oneida Way, Denver, CO 80224; telephone (303) 758-6978, offers Insulgages, flat plastic gauges analogous to the home-made types described above but labeled in Braille with raised numbers. Priced at $9.75 each, these are cut for either B-D or Monoject syringes, and many sizes are available, one insulgage per dose. Use of insulgages in conjunction with the Holdease needle guide and syringe/vial holder (also sold by Meditec at a cost of $12.75) enables non-sighted insulin measurement. The best insulin gauges, home-made or commercial, are made from the most durable materials available. Insulin gauges constructed from cardboard or staples, however inexpensive, are NOT RECOMMENDED. They distort and break too easily. Help with constructing an insulin gauge can be obtained from the Diabetes Action Network. A more complex home-made insulin measuring device was designed years ago by Voice editor Ed Bryant. His gauge was a carefully carved block of wood that allowed precise syringe placement, non-sighted insertion of needle into vial, and reliable tactile duplication of preset doses. To change the dose, he had only to replace one wooden or plastic preset with another. It worked well, but he feels that, since most people do not have access to the necessary precision woodworking, they would be better served by the Count-A-Dose, which he now uses. (Note: The use of non-standard or home-made insulin- measuring devices should only follow a thorough check of such devices.) It is important to understand that insulin gauges are "cut" for a specific brand and size of syringe. Therefore, an insulin gauge that has been cut for a Monoject, Terumo, or other type syringe cannot be used and will not produce an accurate reading on a B-D syringe and vice versa. An insulin gauge cut for a 1cc B-D syringe cannot be successfully used on the 0.5 cc (Lo-Dose) or 30-unit B-D syringe for the same reason. Appliances and Holders The Insulcap, a color-coded, tactile-cue-equipped plastic fitting, attaches to an insulin vial and guides insertion of the syringe, holding the needle at the correct depth. The syringe won't shift and bend the needle since the Insulcap holds the bottle to the syringe, freeing both hands for the filling operation. Offered by Diabetic Insulcap, Inc., P.O. Box 34347, Las Vegas, NV 89133-4347; telephone (702) 363-0426, the Insulcap is sold in sets of two: one blue, without tactile cues and one orange, with tactile cues. Suggested retail price is $7.95. Individuals with low vision, arthritis, or other conditions causing unsteadiness may benefit, though those without sight would be better served by devices such as the Count-A-Dose. The Inject-Aid is a syringe/vial holder incorporating a preset that allows consistent non-sighted drawing of a set, pre-determined insulin dose. Note that insulin adjustment requires sighted aid. The Inject-Aid costs $7.95 and is available from George Wright Industries, 3741 Faulkner Drive, Apt. 301, Lincoln, NE 68516; telephone (402) 423-3253. The Uni-Cal-Aid is similar to the Inject-Aid but incorporates two adjustable preset stoppers, allowing two different doses or insulin mixing. It accepts all syringe types but any adjustment of dose requires sighted aid. Price $25 U.S. or $30 Canadian, available from Uni-Cal-Aid, P.O. Box 1000, Hope, B.C., Canada V0X 1L0; telephone (604) 869-5648. Pen Injection Devices The Novolin Pens. Novo-Nordisk Pharmaceuticals, Inc., 100 Overlook Center, Suite 200, Princeton, NJ 08540; telephone (800) 727-6500, produces 3 pen-type devices. They offer the "Novolin Pen," which retails at $40 (excluding insulin cartridge) and uses 150-unit "Novolin System" insulin cartridges (R, N, or 70/30 mix) and "Penneedle" replacement needles. This device delivers a measured dose of between 2 and 38 units, in 2-unit increments. Novo-Nordisk also offers "Novolin Prefilled" disposable syringes. These devices are smaller than a pen injector, hold 150 units of R, N, or 70/30 mix insulin, and are packed five syringes per package; suggested retail price is (package of five syringes) $19.10, comparable to the cost of cartridge replacements for the Novolin Pen. Novo Nordisk has a new pen injection device, the "Novo Pen 1.5." Similar to the Novolin pens, it uses the 150-unit Novolin insulin cartridges, and delivers insulin in 1-unit increments. According to the manufacturer of the Novo-Nordisk pens and the prefilled Novolin syringes, none of their devices are recommended for use by blind or visually impaired persons without sighted aid. The Autopen is a British-made insulin pen injector designed to use the Novolin system cartridges and disposable needles. In the U.S., it is marketed by Owen Mumford, Inc., 849 Pickens Industrial Drive, Suite 12, Marietta, GA 30062; telephone (800) 421-6936. It is available in two versions: a 1-unit increment (administers up to 16 units) and a 2-unit increment (up to 32 units) pen, differentiated only by color. Each is priced at $33.50. Becton Dickinson Corporation and Eli Lilly and Company offer, as a joint venture, the Humulin Cartridge System pen insulin injection system, the B-D Pen. Similar to the Novo Nordisk and Mumford pens, the system dispenses 150 units of R, N, Humalog, or 70/30 insulin, in 1-unit increments, from 1 to 59 units. Syringe Magnifiers The Insul-Eze 6000, manufactured by Palco Labs (listed above) is a syringe-and-vial holder incorporating a full-length 2x lens, allowing the insulin-drawing operation to be closely monitored. Insulin vials can be changed for mixing without disturbing the syringe. Adaptable, the Insul-Eze works with most types of syringes in the 30-, 50-, and 100-unit size. Cost: $11. The Truhand, a device similar to the Insul-Eze, is offered by Whittier Medical, Inc., 865 Turnpike Street, North Andover, MA 01845; telephone (800) 645-1115. It allows use of different syringe types and sizes and firmly holds the vial, while providing a 3x magnified view of the scale. Vials can be changed for mixing without disturbing the syringe. Cost: $29.95. The Magniguide is offered by Becton Dickinson Consumer Products, One Becton Drive, Franklin Lakes, NJ 07417-1883; telephone (800) 237-4554. It attaches to the insulin vial and provides 2.5x magnification to aid needle insertion, precise dose measurement, and location of bubbles in the syringe. The Magniguide is available (cost: $3.95) from Independent Living Aids, Inc., 27 East Mall, Plainview, NJ 11803-4404; telephone (800) 537-2118. The Ezy-Dose Syringe Magnifier fits all .5cc and 1cc syringes and clips to the syringe barrel, magnifying the scale 2x to aid precise dose measurement. Manufactured by Apothecary Products, Inc., 11531 Rupp Drive, Burnsville, MN 55337-1295; telephone (800) 328-2742, the device does not affect needle insertion, which must be done visually. Price: $4.95, available from LS&S Group, Inc., P.O. Box 673, Northbrook, IL 60065; telephone (800) 468-4789. The Cemco Syringe Magnifier, available in three sizes (to fit syringes of 1cc, .5cc, and .33cc), is offered by Cemco, P.O. Box 31, Scandia, MN 55073; telephone (612) 433-3374. The magnifier clips to the syringe and aids precise filling but needle insertion into the vial must be done visually. Price: $5 retail, or $42 per dozen (any combination of sizes). The Diabetes Action Network of the NFB is a support and information network for all diabetics. We have many members willing to share their expertise in non-sighted techniques of diabetes self-management. Anyone with questions about diabetes and blindness, should feel free to contact the Network and the other organizations at the addresses which appear in the Appendix. Blind Diabetics Can Draw Insulin Without Difficulty Ed Bryant A major aim of the Diabetes Action Network of the NFB and many other organizations is to provide support and information for blind diabetics so they might better maintain or regain independence and productivity. National support and information networks allow communication across a wide area, something important for individuals with diabetes who are blind or visually impaired and their families. With the trauma of sight loss, sometimes the newly blinded do not realize that most men and women who are blind as a result of diabetes CAN manage safely and accurately themselves through use of alternative techniques. I became blind from diabetic retinopathy about 17 years ago. When I first lost sight, I didn't use insulin gauges to help draw my insulin since I had never heard of such devices. Fourteen years ago, I designed my own insulin gauge, and I used it for approximately 3 years with no difficulties. I do not advocate the use of nonstandard or home-made insulin-measuring devices unless they have been checked out by someone knowledgeable in insulin-measuring techniques. Members of the health care community sometimes forget that, although a diabetic may be newly blinded, he or she has often been successfully self-managing the disease for 15 years or more. Most who have had type I a long time have had years of experience drawing their own insulin. Veteran blind diabetics often have more experience with adaptive insulin preparation devices than do many sighted health professionals. The following observations are only a small sample. Because of my experience with diabetes and blindness and my editorship of Voice of the Diabetic, I am often asked to evaluate insulin-measuring gauges designed for people who are blind or visually impaired. I have tested numerous measuring devices, and in my opinion, the Count-A-Dose from Jordan Medical Enterprises is suitable for a broad range of users. I hasten to add that no one instrument is ideal for everyone; however, the Count-A-Dose provides a very easy method of insulin dispensing. How to Get Air Bubbles Out of an Insulin Syringe There are techniques by which a person who is blind may draw and mix insulin without drawing air into the syringe. Like many others, I have used them successfully for years. I first draw 4 or 5 units of Regular insulin into the syringe and then inject all of it back into the vial. I then repeat the operation two more times. The fourth time, I draw the full amount of insulin needed from the first vial. Then, when I draw insulin from the second vial, I draw the exact amount needed. I have put this to the test; 100 repetitions without air bubbles. Diabetes Action Network Second Vice-President Janet Lee has twice performed the same test. In both cases, the complete absence of air in the syringe was independently verified. "Tapping the syringe to remove air bubbles," a common technique used by the sighted, becomes unnecessary. The 1 to 2 units of air in the hub of the needle (where needle meets syringe) are expelled during the procedure used with the first vial of insulin. I demonstrate this technique to nurses who are delighted to see that air bubbles are not present and the insulin measurement is accurate. Of course, long-term insulin users will be familiar with the need to inject as much air into the vial as the amount of insulin they withdraw, to facilitate getting the insulin into the syringe. For further information, users should consult their health care teams. How to Know When an Insulin Vial is Getting Low Each vial of insulin contains 10cc, 1,000 units. The maximum number of units used per day, divided into the vial's 10cc (1,000 units) capacity, gives the maximum number of days the bottle can be used. When I open a new vial of Regular insulin, I divide its 1,000 units by 20 units, the maximum I use daily, so one supply should last me 50 days. As a safeguard, I assume that the new bottle contains only 940 units (9.4cc), which should last a maximum of 47 days instead of 50. I measure my NPH insulin in a similar manner. As long as at least 60 units of insulin remain in the vial, the needle will remain submerged while filling, and there is no danger of drawing air. In drawing out the insulin, I keep the syringe vertical, needle straight up in the vial, so as not to draw out air inadvertently. Many consumers who are blind (and diabetes educators) are unaware of this point's importance--that the natural tendency is to tilt or slant while drawing, which can lead to inaccurate filling and air in the syringe. Many methods exist to determine how long a supply will last. One way to keep track of the amount of insulin in the container is to set aside the number of syringes needed for 940 units of insulin. Another might be to employ Braille, large print, tape recorders, or personal computers to record how much insulin has been used each day. Many diabetics who are blind like me realize the importance of keeping their blood glucose under tight control and follow regimes of insulin- mixing and multiple injections, both of which increase the need for precision. I have found the more precise the record of insulin drawn, the easier to predict safely when it is time for a new supply. Readers should note that though this method is not as precise, before drawing up insulin, users can gently shake the vial and, with practice, easily determine whether it is full, half full, or nearly empty. The Possibility of Inserting a Needle into a Blood Vessel Because injection sites are in fleshy areas and insulin needles are short, chances of inserting a needle into a blood vessel are minimal. The worst that can be done is to hit a small capillary, which would result in a small area becoming infused with blood--a hematoma. Again, it is unlikely the needle will be inserted into a small blood vessel. The amount of insulin entering the bloodstream via a capillary would be insignificant and cause no harm. Something to Think About I periodically have my insulin gauge checked for accuracy; it has always measured precisely. If a person is careful, difficulty in measuring insulin will not occur. I have found that inaccuracy is often the result of haste or carelessness. It is reported that insulin gauges are more accurate than sight. When the plunger is pushed firmly to the gauge, the same amount of insulin will be obtained every time. Sometimes my sighted friends make errors in drawing insulin. Perhaps they would be more accurate if they used insulin gauges! It is important to remember that syringes are mass-produced. Although there is quality control, some errors are made in syringe markings. If a gauge is used, the measurement will be accurate no matter what the syringe shows. At first hearing, all this may sound like a lot to remember, but it is not difficult. Marla Bernbaum, M.D., CDE, Assistant Professor at St. Louis University Medical School, Department of Endocrinology, concludes, "In our experience here, most patients with diabetes who are blind or visually impaired have been capable of drawing their own insulin with complete accuracy." Janet Lee, Director of the Independent Management for Blind Diabetics Program at BLIND, Inc., Minneapolis, MN, agrees: "In my 10 years of working with blind diabetics, hundreds of them, there have maybe been two who, because of a combination of disabilities, could not measure their own insulin." And Ruth Ann Petzinger, RN, MS, CDE, Diabetes Care Manager/ Educator at St. Peter's Medical Center, New Brunswick, NJ, confirms: "During the time I have been working with persons with diabetes and visual impairment, I've never had a patient who truly wanted to be independent with insulin administration or blood glucose monitoring who was not able to achieve these goals." Those testimonials are echoed by numerous specialists and diabetes educators. For example, Ann Reardon, RN, MSN, CDE, with the Georgia Department of Human Resources/Medical College of Georgia says, "In my experience, with proper training, almost all diabetics are able to prepare and administer their own insulin safely, regardless of visual impairment." Ann Williams, MSN, RN, CDE, Diabetes Program Coordinator, Cleveland Sight Center, and her colleague Marylin Teasley, RN, CDE state: "In the last 8 years, we have taught about 800 people who are blind or visually impaired to measure and administer their own insulin independently. Vision loss does not preclude safe and effective insulin self-administration." I have no problems managing and keeping my diabetes under control. I control it through the use of alternative techniques, some of which are described here. Many members of our organization, the National Federation of the Blind, use them daily to live active lives. With alternative techniques, blind diabetics can be as productive as when they were sighted. People who need the benefit of firsthand experience should ask for assistance. Many are ready, willing, and able to help. Those of us with experience want your clients to know that no matter what their diabetes ramifications, they are not alone and do have options. We in the NFB know that blindness is not synonymous with inability. Insulin Vials with Tactile Markings Traditionally, insulins have been packed in identical vials (or pen cartridges), with the different types distinguished only by the writing on the label. Most who are managing diabetes, blind or sighted, mix insulins, but how do they tell their R from NPH, or Lente, or new quick-acting Humalog, if they cannot read the labels? For decades, blind diabetics, and those experiencing fluctuating vision (a condition in which vision may go from adequate to unusable, and perhaps back again, in days or hours), marked their insulin types with tape or rubber bands or asked someone else to read the labels. Rubber bands break, and tape falls off. Sighted aids are not always available, and people who are blind are entitled to their independence. For 5 years, the Diabetes Action Network of the NFB campaigned to convince the Food and Drug Administration (FDA) and the insulin manufacturers to incorporate tactile markings on insulin vials. In letters, calls, and meetings with insulin industry and FDA representatives, the Diabetes Action Network pushed for permanent, easily detectable tactile markings on insulin vials, sufficiently prominent that individuals with neuropathy could detect them. Our labors have borne fruit. The FDA has agreed change is overdue, and FDA officials gave us full credit for making the critical meetings happen. Shortly, all insulin vials will likely carry tactile distinguishing markings, a series of raised horizontal bars on the label. Probably one bar will mark the contents as "quick-acting," two as the familiar "Regular" insulin, and three bars as one of the suspension insulins. A four-bar marking will probably be reserved for any new insulin class not yet developed. If all proceeds apace, the new insulin vials should be on pharmacy shelves by the latter part of 1998. Once older insulin stocks are used or discarded, the consumer should encounter only tactile-marked vials. This should help make the process of truly independent diabetes self-management much safer for individuals who are blind. I've Gotten Attached to My Insulin Pump Veronica Elsea Veronica Elsea is a professional musician with her own studio, and a member of the Diabetes Action Network of NFB. Here she provides, based on her own experience, a detailed explanation of how blind diabetics who are blind can independently use insulin pumps. With the recent awareness of the benefits of tight glycemic control, many diabetics may be considering the use of an insulin pump. Yet along with the curiosity, excitement, and optimism come some challenges for blind persons. They must often start by convincing their health care professionals that yes, they can make use of this new technology--a tricky proposition if they have never actually seen or used the device. I hope that by describing how I manage my pump, this challenge will be more quickly and easily met. I am totally blind, a type I diabetic, and I have been using the Disetronic (H-Tron V) insulin pump since September, 1991. The learning process was quick. I had the entire kit--pump, supplies, and manuals--sent to me ahead of time. I did not then own an optical scanner, so my husband read the manual to me, and I had the time to explore the pump privately. This process took one evening, and I found it very helpful. The pump is small, about the same size and shape as a little travel pack of facial tissues. It has only three buttons, two on top and one on the front. There are no complex menus or screens to learn. In fact, for a person who is totally blind, the training is usually very quick because most "training time" is spent learning the print symbols for "cartridge," "battery," etc. Everything the user does with the pump is confirmed by beeps. Pressing once on either top button will bring three short beeps to indicate the pump is running; one long beep indicates the pump is stopped. When in stop mode, the pump also beeps every minute as a reminder. So if I'm removing my pump and don't wish to wake my husband while I shower, I temporarily turn off the beeps. Batteries. The pump uses two batteries, which are very easy to install and remove. There is a low battery alarm which is described below. Filling the cartridge. The pump uses a glass cartridge, holding 315 units of Regular insulin. Filling it is a very "blind-friendly" process. I simply place the cartridge in its holder and attach a needle to one end and its plunger to the other. After removing the cap from the needle, I insert the needle into an insulin vial, upright on my table. I then turn the whole works upside down and grasp the holder in my left hand. I can then push the plunger all the way up and begin pulling it out, slowly and steadily, filling the cartridge with insulin. The holder prevents the plunger from being pulled out too far. The question most sighted people ask is about preventing air bubbles. I find it's easy to get air bubbles because it's hard to pull the plunger out evenly. So, after I fill the cartridge, I slowly push the plunger back in again--and surprise-- the air bubbles are very audible! I usually do this a few times, pushing and withdrawing the plunger, sometimes tapping randomly on the holder. When I push in and hear nothing, I stop, pull it back out, and that's it! I then pull the insulin vial off, cap the needle, unscrew the plunger and the needle, put a little cap on the cartridge, and lift it out of the holder. Sometimes just to be safe, I fill the cartridge in the evening and let it stand overnight before placing it in my pump the next morning. This allows the air bubbles to dissipate. Disetronic is now recommending this procedure for sighted pumpers as well. Priming the pump. Near the battery compartment there is a hole into which the cartridge fits. I insert what's called the "piston rod" into the cartridge, where the plunger had been. This piston rod is what moves, forcing the insulin out of the cartridge. Once the cartridge is in the pump, I pull off its cap and put on what's called the "gray adapter." It forms an airtight seal and has an opening in the top where the tubing is attached. By pushing a few buttons, I tell the pump it has a new cartridge, and it sets its display accordingly. The pump beeps when the process is complete. Getting insulin where it's needed. The insulin is delivered through a needle or cannula, which is placed anywhere you'd give an injection with a syringe. I use only my abdomen; I find it easier and more reliable. I use a Teflon cannula called "Tenders," made by Disetronic. I find them easy to insert and very forgiving. In fact, if a person has any neuropathy in the hands, these cannulas and cartridges may prove quite a blessing since they're fatter and larger than regular syringes. The "Tenders" are inserted at an angle, up to 45 degrees or so. I just hold it at a slant, push it in, and don't worry about it. As one might expect, once I insert the cannula and remove its insertion needle, it is held in place with tape. With the new "Tenders", the tape is part of the cannula, so I no longer find myself holding something in place while searching for a piece of tape somewhere on a table! It's designed for one-handed operation by a sighted person, which means it can, without vision, certainly be done easily and comfortably with two. Tubing. The cannula is connected to the pump through special tubing. One end of the tubing is pushed into the end of the cannula, and the other screws into the gray adapter, as mentioned above. Before I connect the tubing, it must be primed (filled with insulin). This is done very simply by pressing all three buttons at once. When priming, I hold the end of the tubing in my left hand, and extend one finger until it rests directly under the spot where the insulin will come out. When that finger is damp, I know my tubing is completely primed. I stop the insulin flow by pushing one button with my right hand. I then attach the tubing to the cannula. Priming is treated as a separate function because the pump keeps track of daily insulin usage, so the amount of insulin used in this process is not added on to the total. Insulin delivery. With a pump, one receives insulin in two different ways, the basal and the bolus. When the pump is running, it will automatically deliver insulin every few minutes, having been programmed (set) for an hourly rate. For instance, my basal rate for the hour at which I write this is 0.4 units. The pump then portions that amount over the hour. I can set a different rate for each hour or make many of them the same, depending on my needs. (I keep a list of my rates in a file in my Braille Lite.) The process of setting basal rates is one of counting beeps. With the pump stopped, I push one button to move from one hour to the next. The remaining two buttons allow me to go either up or down 0.1 unit at a time. There are special shortcuts (button combinations) for some tasks, such as setting all rates alike or repeating the same setting for the next hour, etc. And yes, if a person really gets lost, it is possible to just go back to "0" and start over. When it is time to eat, or if one needs to take extra insulin because he or she is "high" (i.e., has elevated sugars), the pump can be told to give a "bolus." When the pump is running, a press of either button on top will deliver 0.5 units of insulin. So if a person wanted 3 units, they would press the button six times. The pump will beep as one presses the button and then will repeat the beeps back before actually delivering the insulin. By the way, these buttons are designed to be felt through clothing, so one need not stop and fish out the pump. I have often given myself a bolus while standing in the buffet line, making my food selection. In the same manner, one can temporarily reduce the basal rate in cases such as extra exercise. Carbohydrate-counting. This is a skill learned as part of pump training. In my case, I take 1 unit of insulin for every 12 grams of carbohydrate, except in the morning, when 1 unit covers 10 grams. I worked with a dietitian to learn portion sizes and read food packages. There are many print books which list the carbohydrate and calories for various foods, and I'm hoping we'll shortly find this information on line. Alarms. The pump has alarms for low batteries, occlusion, electronic problem, "out of insulin," and end of use of your pump. Although the same beep sounds, the alarms behave differently. Disetronic has expressed willingness to make these alarms easier to understand by having the beep match the "error number." For instance, error 3 means a low motor battery. In the future, the alarm for this might be a repeating pattern of three beeps. But for now, we just have to learn what the beeps mean. An alarm will beep constantly until silenced. If nothing else is done, it will beep again in 1 hour. This process can go on for as long as 12 hours. I have learned that I usually get about 2 months' use on one battery set. So if I'm planning a trip, I usually just change them when I think it's about time, not waiting for the alarm. Incidentally, the pump does not forget the basal settings when one changes batteries. The occlusion alarm, on the other hand, will emit the same constant beep until silenced. But it will sound again every time the pump tries to deliver insulin, every few minutes. It also puts the pump in stop mode. The pump warns as one approaches the end of a cartridge. The user will hear one beep when there are 20 units of insulin left, (I often miss this one), two for 15, three for 10, four when there are 5 units left, and an alarm when it runs out. This alarm acts like the occlusion alarm, but it has of course been preceded by all those warnings. The display. I have not found any way to read the display successfully; it's too small to read with my Optacon. This display shows the amount left in the cartridge, the total amount of insulin used since midnight, the amount and time of the last bolus, and the current basal rate. It also shows symbols or numbers as one primes, installs a cartridge, sets the clock, and sets basal rates. At first, I used a calculator to keep track of my insulin usage, but now I know that under normal conditions, a cartridge lasts me about 8 days. Once in a great while, I just ask my husband to check a number, or to double check my readjustment of my basal rates. I rarely miss this display. The clock is also set by counting beeps. It can get a bit tedious, though, since one can only go forward; patience is required when changing back to standard from daylight time. Wearing the pump. The pump only weighs a few ounces, has very rounded edges, and is very rugged. Many people place the pump in a pants pocket or on a belt loop. I prefer wearing mine tucked in my bra or in a shirt pocket. If I'm wearing a very nice dress, I often put it around my waist. (One can buy all sorts of pouches for holding the pump.) It doesn't hurt to roll over on it, bump it, or anything. I find that I only occasionally startle someone who gives me a big hug and wonders what that "thing" is. With mine, I've gone swimming, hiking, shopping, dining, and more. Until the arrival of the "Tenders," I carried the pump into the shower every day. I would put it in a bag that I could hang on the faucet or clip to a shower curtain, and yes, the tubing is long enough to allow plenty of room for moving around. Tubing comes in different lengths, although I prefer the shortest, 31 inches long. Only once during an exuberant "good morning" did my guide dog reach up and catch her paw in the tubing. It's a weird feeling to catch the tubing on something, but it takes real effort to knock out the cannula. Questions or problems. I have found the people at Disetronic to be very helpful when I had a problem. They've done very well at giving blind-friendly descriptions of things over the phone, listening to my suggestions, and sending me things for trial purposes. Advantages. I really notice a difference in my control. I use less insulin, have fewer highs and lows, and just plain feel better. I also love the flexibility; I decide when it's mealtime and can easily make adjustments if I am surprised by things like a sauce they didn't mention, or a walk that was longer because some street didn't go through. I love the convenience of not having to carry around all those little bits and pieces. Here's one example: I regularly attend breakfast meetings. I test my blood before I leave home. Because I never know when breakfast will actually arrive, I wait until the meeting has started, then just reach up and push the button. People don't even notice that I'm doing it; their pagers and mobile phones are much louder. I feel very efficient and inconspicuous, just the way I like it. If I'm out and unable to test or don't get a valid test, I find the pump very helpful. I take the amount of insulin which will match the upcoming carbohydrate or familiar diet pattern, and know that it's easily straightened out later, just by pushing a button. I'm also not so worried about going out and getting in trouble from low blood sugars because there's no long-acting insulin. Once I eat something, I know I'll be okay. I sincerely hope that relating my experiences with the pump will promote constructive discussions with health care teams about whether or not the pump is right for blind diabetics, with considerations based on diabetes and not blindness. Note on suppli