Sharing Solutions Spring 2008 A newsletter for People with Impaired Vision and Their Support Networks Celebrating 15 Years of Sharing! When Sharing Solutions was first published in 1993, our hope was to build a national resource to support the exchange of information, experiences and solutions among people with vision loss, their family members and friends. Thanks to you — our more than 35,000 readers — our initial hope has become a vibrant reality. Over the years, you’ve enriched our content by suggesting topics, asking questions and sharing your personal trials and triumphs. And your feedback — about how valuable Sharing Solutions is to you and your support networks — is very gratifying. In this issue, our glaucoma experts bring us up to date on the diagnosis and treatment of this complex disease. And we include strategies for adapting to vision loss in the advanced stages of glaucoma. Our “Coast to Coast” features your heartfelt responses about how vision loss has impacted your life, how you cope and your advice to those newly adjusting. Our next topic focuses on the effects of culture, race, religion and/or ethnic background on your reactions and adaptation to vision loss. Finally, a nutritional “primer” highlights getting back to basics when it comes to healthy eating and living. As always, thanks for sharing — and here’s to celebrating 15 years together! Carol J. Sussman-Skalka Newsletter Editor Understanding Glaucoma by Nathan Radcliffe, MD, and Jeffrey Liebmann, MD Glaucoma is a progressive eye disease affecting the optic nerve (the nerve that carries visual information from the eye to the brain). While glaucoma is often equated with elevated eye pressure (intraocular pressure), optic nerve damage from glaucoma can occur in eyes with any intraocular pressure, although it occurs more frequently when the pressure is high. In glaucoma, progressive optic nerve damage can result in a gradual reduction of field of vision (the entire area that can be seen at any particular moment without shifting your gaze). At first, peripheral or side vision is affected. Unfortunately, vision that is lost due to optic nerve damage cannot be restored. However, the disease can be slowed and further vision loss prevented by lowering the intraocular pressure. While it’s possible for patients with low, normal or high intraocular pressure to develop glaucoma, regardless of the starting intraocular pressure, the mainstay of glaucoma management is to decrease intraocular pressure — the only proven way to slow its progression. Therefore, glaucoma is a “pressure-sensitive” disease of the optic nerve. There are many different types of glaucoma since different eye problems can lead to elevated intraocular pressure. Types are broadly grouped into two categories based on whether or not the eye’s natural fluid drainage system has been physically blocked by the iris: open angle glaucoma (when there is no physical blockage); and closed angle glaucoma (when there is). All types respond favorably to reduction of eye pressure. How Glaucoma Is Diagnosed Ophthalmologists diagnose glaucoma by evaluation of the optic nerve, retina and the visual field. In glaucoma, there is a specific pattern of optic nerve damage, called “cupping.” This term describes the hollowed out appearance of the optic nerve that occurs as a result of the death of optic nerve fibers. Since nerve fibers carry visual information back to the brain, death of these fibers results in damage to the field of vision. As glaucoma progresses, the cupping of the optic nerve progresses and the visual field becomes more damaged. Therefore, eye doctors monitor the appearance of the optic nerve by examining this structure and recording their findings for future comparisons. Photographs of the optic nerve are very helpful as they reveal its appearance in great detail. Several new devices use computerized laser and light to scan the optic nerve, including GDx (Scanning Laser Polarimeter), HRT (Confocal Scanning Laser Ophthalmoscope) and OCT (Optical Coherence Tomograph). These devices allow ophthalmologists to compare their patients to a database of patients without glaucoma and to follow changes in the optic nerve over time. Visual field testing also provides the doctor with valuable information, by requiring responses to light stimuli presented randomly to different parts of a patient’s field of vision. All of these technologies augment the clinical examination, allowing the ophthalmologist to effectively manage glaucoma. What Are the Treatments? There are several ways to lower intraocular pressure: with medications (usually eye drops), lasers or surgery. Medications work by decreasing the fluid (known as aqueous humor) produced internally by the eye, or by increasing the rate at which fluid leaves the eye. Beta blockers, carbonic anhydrase inhibitors and alpha adrenergic agonists decrease the production of aqueous humor. And prostaglandin analogues, taken once daily, increase the outflow of aqueous humor from the eye. Over the past decade, this class of medications has become a powerful treatment option. Generally, both doctors and patients prefer eye drops that are dosed only once or twice per day, since more frequent dosing can create compliance issues. For this reason, two eye drop medications are sometimes combined into a single bottle. Currently, the combinations that are available include a beta blocker with a carbonic anhydrase inhibitor or a beta blocker with an alpha adrenergic agonist. A patient who feels burdened by a complicated eye drop schedule may want to ask his or her doctor if any of the prescribed drops are available in a combination form. Since individual responses to medications vary, a trial of several different eye drops may be needed until the best one is determined. It’s important for the patient to tell the eye doctor about other medications, since systemic medications may affect glaucoma care. It’s a good idea for patients taking multiple eye drops to write down and review the eye drop schedule with the eye doctor and other medical doctors on each visit. Some patients find it helpful to keep track of which drops have been taken by keeping a diary or by crossing off a daily checklist. Finally, patients should communicate with their eye doctor about any problems: expense, side effects or difficulty putting drops in the eye (see page 7). Since there are many choices of eye drops and eye drop combinations, good communication will help patients and doctors find a therapy that’s effective, well tolerated and affordable. Laser surgery, such as argon laser trabeculoplasty (ALT) or selective laser trabeculoplasty (SLT), is another option for intraocular pressure reduction. Unlike eye drops, which have to be taken daily, a single laser treatment may work successfully for years. But since the results may not be permanent, laser surgery usually can be repeated. In the US, incisional surgery (performed in the operating room) is generally reserved for situations in which eye drops or laser therapy cannot reduce the pressure enough to prevent the progression of glaucoma. While there are many types of glaucoma surgery, most work by allowing more fluid to escape the eye through a new route created by the surgery. Some surgeries (such as trabeculectomy) make this escape route through an incision at the base of the cornea. Other surgeries (such as tube or valve placement) insert a small drainage device. Since all surgery has risks, patients should discuss these risks in detail with their doctor. “Neuroprotection” is a novel method of arresting glaucoma progression by protecting nerve fibers from death rather than by lowering intraocular pressure. Recently, Allergan performed the first Phase III study investigating the safety and efficacy of memantine (a medication used to treat Alzheimer's disease) as a neuroprotective treatment for glaucoma. Unfortunately, the results showed that memantine was not significantly better than placebo in preventing glaucoma progression. While this was a disappointment to ophthalmologists who were hoping to offer patients a pill that could arrest glaucoma, the promise of neuroprotection remains, and other candidate medications are being investigated. In the US, glaucoma treatment is usually initiated with eye drops. Regardless of which drops are used, it’s critical that patients adhere to a strict schedule. Doctors and patients must work together to develop a treatment plan that facilitates adherence to the medical regimen so that vision loss from glaucoma can be prevented or minimized. Nathan Radcliffe, MD, and Jeffrey Liebmann, MD, are ophthalmologists with the Glaucoma Associates of New York, and are affiliated with New York University School of Medicine and The New York Eye and Ear Infirmary in New York City. Glaucoma Questions and Answers Q: What Are the Symptoms? A: Initially, there are no symptoms. Your vision may appear normal for years, in spite of gradual damage from glaucoma. That’s why it’s so important to have annual eye examinations. Q: Am I at Risk? A: Although anyone can get glaucoma, the following people are at higher risk: • African Americans over age 40 • Everyone over age 60, especially Mexican Americans • People with a family history of glaucoma Q: How May I Be Affected? A: There are a number of ways, including: • Missing things in the periphery (sides, above or below), causing you to bump into people, knock things over or trip on uneven terrain • An increased risk when crossing streets, if moving vehicles are outside your line of vision • Diminished contrast sensitivity, which affects your ability to recognize faces and detect curbs or steps • Difficulty driving at night or on a cloudy day Q: What Can I Do? A: Vision rehabilitation experts recommend the following helpful strategies: • Focus light directly on the task; the amount of light may need to be fine-tuned to increase contrast • Enhance contrast and block UV light outdoors with yellow, light amber or light brown sunglasses — be sure the tint isn’t too dark, as it may reduce your vision • Consider coated (anti-reflective) or Polaroid lenses to manage glare outdoors • Experiment with print size that takes into account the extent of your field of view; larger is not always better • Turn your head to scan the surroundings in order to get all the visual information you need • Consult with a certified orientation and mobility specialist to learn techniques to move around at home or in the community safely • Follow your eye doctor’s advice and faithfully adhere to your medication schedule Coast to Coast: Readers Share How Vision Loss Impacted Them In our last issue of Sharing Solutions, we asked you to tell us about the most significant impact vision loss has had on your life, how you cope and for your advice for people who are newly adjusting. The topic stimulated lively and heartfelt discussions in support groups around the country. Here’s what you told us: • Most Significant Impact • Driving: Giving up driving can be devastating. One group member described it bluntly: “It’s like having your legs cut off.” The inability to drive represents not only a loss of independence but also a loss of privacy. A reader said, “I can’t go anywhere by myself.” Another summed up the difficult, gradual adjustment by saying, “I am accepting, over time, the things I cannot change.” To adapt, many people use public transportation, take taxis or rely on family and friends. Others moved to assisted living communities that offer transit options. • Recognizing Those Close to You: When you’re not able to see people’s faces or recognize their voices, it can be embarrassing and upsetting: “I can no longer see my husband’s face or the faces of family members. It hurts so badly.” One man was concerned about offending friends he didn't recognize. Readers strongly suggested letting people know you have vision loss and asking them to identify themselves when they see you. Even those who know you well may not understand what you can and cannot see. One reader made it clear, “Vision loss is not something to be ashamed of. You need to tell people about your condition.” • Reading: Even though there are many options that make reading possible, like large-print books, CCTVs, magnifying lenses, audiobooks, radio reading services and asking family or friends to read, many people reported that reading remains difficult. To make it easier, one woman told us that she makes sure to have a magnifier by the phone, another in her purse and yet another near her bed so she can have one handy whenever she needs it. • Traveling: Several readers shared that orientation and mobility training was a great help in getting around safely. Learning from a professional how to use a long cane has given many people a new level of independence. • Cooking: Cooking presents a different set of challenges. Several people praised the professional training they received that enables them to use their stove/oven and handle appliances/cutlery safely. “Keep it simple!” is a frequently cited motto, making crock pots and microwaves popular. People read recipes using a magnifier, CCTV or by listening to them on tape; and many use a large-print timer to keep track of cooking times. Visit www.lighthouse.org/livingbetter for free online courses that take you step-by-step through various safe food preparation techniques and other helpful information. • What You Wished You Knew! “It would have been nice to know that I was not alone in my new struggle,” one person said, echoing the most common response that readers wished they knew about support groups and how helpful they can be. “Being part of a support group has been a blessing,” is how a reader put it. Many people urge eyecare professionals to inform their patients that support groups exist — and are an invaluable resource. Others wished their ophthalmologists had referred them (sooner, or at any point) to a low vision specialist for prescription optical devices such as magnifiers and telescopes that improve daily functioning. A number of people didn’t realize they could continue many of their favorite activities, including one woman who initially gave away all her craft and sewing supplies before she learned new ways to enjoy her hobby. Others indicated it would have been helpful to know more about eye conditions, treatments and risk factors; professional vision rehabilitation services that restore safety and self-sufficiency; and the numerous adaptive products that make life easier such as talking watches, bold-tip pens and large-print check registers. • Your Advice Our request for advice resulted in an outpouring of thoughtful suggestions for those newly adjusting to vision loss: • Join a Support Group! This was the most frequently cited recommendation. Meeting others who understand what you’re going through truly does make a difference. As one support group member shared, “We learn from each other, we laugh with each other and we learn to cope with our situations.” Another reader urges, “Spend your time with people who are determined to continue enjoying life in spite of vision loss.” • Learn About Services and Helpful Equipment: “You can do almost everything you did before (except driving) but in a different way,” affirms one group leader. Seek out a low vision specialist and ask questions about magnifiers, telescopes and tinted lenses. Don’t hesitate to go back for another evaluation if your vision changes. Take advantage of vision rehabilitation training for help with marking appliance settings, managing medications and learning new techniques for performing tasks safely. In addition, there are also many specialty catalogues that feature helpful products from writing aids to adapted games — all of which provide practical solutions so you can continue to enjoy life. • Be Open: Your vision loss also affects your family who may not fully understand the impact of your eye condition. You may need to explain, for example, how you cannot distinguish facial features, or that placing light objects on a dark background can make them more visible. It may also be necessary to remind your family to keep paths clear so you can feel safe, or ask them to return things to their proper place after use. Family members are also making their own adjustments and may be apprehensive and uncertain about how to best support you. So they need your understanding as well. • Accept Help Graciously: You have to learn to ask for help and allow others to do so — which can be difficult. One reader shared, “One of the hardest things for me was asking for help. I overcame my difficulty because of my faith and the kindness of others.” Be specific about the assistance you need and what you can do yourself so others can provide necessary support but not over help. “You can always return the favor with a smile, a thank you, a card or a gift,” suggests one reader. • Stay Positive: Looking on the bright side isn’t always easy, but as stated so well by one of our readers, “You’re still the same person. Don’t let yourself become defined by your vision loss. You’re still funny, intelligent, resourceful, a friend, a wife, partner or husband, a mom or a dad, a good listener and so on.” Another reader reinforces the message: “Try to remember that your vision may be impaired, but your life doesn’t have to be.” Adjusting to vision loss is an ongoing process, as one reader aptly described, “You need to constantly adapt, whether it’s learning to use tactile cues, trying new ways to accomplish tasks or learning to trust your own intuition.” And try to focus on what you can do instead of what you can’t. A support group member summed it up this way: “Seek out other people with impaired vision who are coping well — and learn from them.” l Nutrition: Back to Basics by Eleanor E. Faye, MD, and Cydney H. Strand, RN How do we sort out what’s real and what’s not when it comes to healthy eating? One day, we learn that protein is bad and carbohydrates are good. Then we hear just the opposite. And fat has been getting a bum rap for years — until we discovered that there are good fats and bad fats. Margarine went from being a health savior to a source of dangerous trans fats. One answer is to look at what’s stood the test of time. If we go back to basics, healthy eating and good nutrition are not so complex. And remember that healthy eating affects your whole body, including your eyes. Let’s take a look at what’s always been healthy: Eat Your Veggies: Eating a variety of fresh vegetables has never gone out of style and is good for your vision. Vegetables provide a host of natural antioxidants (e.g., lutein, zeaxanthin, zinc and vitamin C) along with fiber to keep your digestive tract running smoothly. Choose from red and yellow peppers, any variety of squash (butternut, acorn, Hubbard), zucchini, carrots, tomatoes and yams. These sweet vegetables can crowd out our need for high-sugar foods. Add leafy green vegetables such as watercress, collard greens, chard, kale and mustard greens to your daily diet. Vegetables in the cabbage family such as broccoli and Brussels sprouts also have excellent antioxidant properties. Eat Whole Fruits: Make an effort to eat whole fruits instead of drinking fruit juices, which are high in simple sugars. Fruits provide fiber, vitamins and minerals not found in processed juices. Chew fruits well to satisfy your sweet tooth longer. If you drink juice, check the label to make sure it’s “juice” and not a “juice drink” flavored with extra additives and sugar. As with vegetables, choose fruits of various colors such as red grapes, green kiwi, orange melons or purple berries. Keep Your Carbs Complex: Eat complex carbohydrates such as whole grains (bulgur, brown rice, millet and oatmeal) and legumes (beans, peas and lentils). Restrict the processed foods you eat, especially bread, crackers and baked goods made with white flour. Avoid foods that contain high amounts of sugar. A healthy food like yogurt has been subverted by including fruit; one popular brand contains 40 grams of sugar (11 teaspoons) in less than a one cup serving! Also avoid high-fructose corn syrup (HFCS), an inexpensive sweetener that adds empty calories and no nutrition to sodas, salad dressings and many processed foods. Water: It’s important to drink water throughout the day — water rather than tea, juice and vitamin waters. If you have heart or kidney disease, or glaucoma, discuss fluid intake with your doctor. Consider a simple filter (on a pitcher or faucet) for filtering out particles and chemicals. Protein: Fresh fish that is baked, grilled or broiled is a healthy source of protein and omega-3 fatty acids. Be aware that farm-raised salmon and catfish have been found to contain high levels of PCBs (contaminants from their feed). Look for “wild salmon” caught in the ocean instead. Excessive consumption of any fish, including tuna may raise blood mercury levels. Fats and Oils: Monounsaturated oils such as olive, avocado, rape seed or canola are the healthiest. Cook with olive oil and use it on salads. Remember, oils are still “fat,” so even monounsaturated oils should be used in moderation. Saturated fats that are hard at room temperature, such as butter, are safe to eat in small amounts. Hydrogenated Fats: Trans fats are made when hydrogen is added to vegetable oil, a process called hydrogenation or partial hydrogenation. A major cause of arterial plaque, trans fats should be avoided. They’re found in packaged chips, cookies, baked goods and fast food. If you use margarine, select a brand low in both trans fats and saturated fats. It’s Not Only About What We Eat Sunlight: While over-exposure to sunlight is a risk factor for macular degeneration and skin cancer, moderate exposure to sunlight is an important source of Vitamin D. In the summer, it is safer to catch some sun in the early morning and/or the late afternoon. If you’re in direct sunlight at midday for more than 20 minutes, protect your eyes from ultraviolet light by wearing sunglasses with UV protection. Exercise: Exercise moderately and consistently, every day if possible. Walking is one of the best exercises and an important “nutrient” for health. Smoking: Don’t! Also, do your best to avoid second-hand smoke. Read Labels: When you’re visually impaired, reading labels, notoriously in small print, can be very difficult, if not impossible. If using magnification does not help, ask a friend or family member to check ingredients when buying processed foods. Or ask a store manager for assistance. Stay tuned! In our next issue, we’ll look at supplements. Share your questions with us by e-mailing sharingsolutions@lighthouse.org. Eleanor E. Faye, MD, is Medical Director, and Cydney H. Strand, RN, is Senior Clinical Educator, at Lighthouse International. Stay up to date on important advocacy initiatives Sign Up for a free advocacy newsletter at http://lighthouse.org/advocacylist or call (212) 821-9485 for a copy downloaded from our Web site Tips for Putting in Glaucoma Eye Drops Many patients have difficulty putting in eye drops. If you’re unsure about the right technique, ask your eye doctor to observe you at your next visit. Work with your doctor and your family to find a method that’s right for you. Many people find it helpful to follow these steps: • Wash and dry your hands first before you open the bottle • Tilt your head back • Hold the bottle upside down with one hand • With your other hand, pull down your lower eyelid to form a pocket • Place one eye drop into the lower eyelid pocket — one drop is all that the eye holds! • Close your eye gently — do not squeeze or blink • Press on the inside corner of your closed eye with your finger for about one minute • Be sure to wait at least five minutes before applying a second eye drop • Consider storing your eye drops in the refrigerator, as the cool feeling may help you tell if the drop is getting into your eye Adhering to your dosage schedule is critically important. Keep in mind that gradual loss of side vision from glaucoma does not cause pain nor is it immediately noticeable. Following your doctor’s treatment regimen is the best way to prevent vision loss. Thanks for Sharing … Karolina Smiley, Association for the Blind and Visually Impaired Support Groups, MI; Linda Scribner, League for the Blind and Disabled Support Groups in Angola, Auburn, Decatur, Fort Wayne, Kendallville and LaGrange, IN; Bobby Scheider, NJ; Theresa Molinaro, NY; John McElheron, Ionia County and The Way Eye See It Newaygo County Support Groups, MI; Kimberly Kuster, OASIS for the Visually Impaired Support Group, IL; Mary Eileen Hogan, Downriver Association for the Blind and Visually Impaired, Inc. Support Groups, MI; Margaret Hunerjager, MI; Caryn Goodman, The View Discussion Group, NJ; Cathy Ferrero, Ruth Pollitzer & Jean Licari, NJ; Edward Edwards, WI; Betty Cain, Low Vision Support Group Max II, SC; Phyllis Bierdz, Mayslake Village Low Vision Support Group, IL; Shirley Babcock, Albion Area Visually Impaired Peer Support Group, NE; Anne Ahland, Friendship Village of Tempe Low Vision Support Group, AZ Take Part in Our Next Coast to Coast What drives our responses to a life-changing event like vision loss? In our next exchange, we’d like to explore a variety of influences. Use the following questions as a guide at your support group meeting or during conversations with family and friends. • How has your culture, religion, race or ethnic background influenced your responses to vision loss? • In what ways have they helped, or hindered, your adjustment? • Does your culture have a particular view about vision loss? Please respond by September 19, 2008, so that your responses can be included in our next issue. Call Carol Sussman-Skalka at (212) 821-9481 or e-mail her at sharingsolutions@lighthouse.org. You can also send letters or tapes to Carol at Lighthouse International, 111 East 59th Street, New York, NY 10022-1202. L Our heartfelt thanks go to the Wallerstein Foundation for Geriatric Life Improvement for its compassion, commitment and generosity in supporting Sharing Solutions, enabling our growing number of readers to participate in, and benefit from, our national sharing network. Sharing Solutions Cynthia Stuen, PhD/DSW Senior Vice President, Policy and Professional Affairs Carol J. Sussman-Skalka, LMSW, MBA Newsletter Editor Karen R. Seidman, MPA Director of Education and International Programs Laurie A. Silbersweig Editorial Director, Marketing Jaine M. Schmidt Creative Services Director Lighthouse International Tara A. Cortes, PhD, RN President and CEO Lighthouse International is dedicated to helping people of all ages overcome the challenges of vision loss. Lighthouse International The Sol and Lillian Goldman Building 111 East 59th Street, New York, NY 10022-1202 Tel: (212) 821-9200 • (800) 829-0500 Fax: (212) 821-9705 www.lighthouse.org This newsletter is available in alternate formats and on our Web site at www.lighthouse.org. To add your name to our mailing list, send an e-mail to sharingsolutions@lighthouse.org, indicating your preferred format. © 2008 Lighthouse International Printed on recycled paper J05840/S08/8500/5-08 Lighthouse International The Sol and Lillian Goldman Building 111 East 59th Street New York, NY 10022-1202 Address SERVICE Requested