 | Glaucoma: What Every Patient Should Know |  |
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Take Home Points
Taking the step to meet with a Vision Rehabilitation specialist takes willingness to change
It’s what’s next after regular glasses don’t help
Reading can still be fun, but with changes in how it’s done
Safety in walking and living means keeping your independence
Whether you still drive or not should be determined with expert advice
Some years ago, Dr. Quigley’s godmother, whose art projects had always graced her home, developed a severe vision problem in her 80s. Unable to read normal print with standard glasses, she felt that it might be no longer possible to lead a “normal” life. Fortunately, two things made it possible for her, until her passing at 103, to continue to send lovely hand-written letters, to do her finances and to surf the Internet. First, she had the wonderful capability of adjusting to change. That isn’t easy for us. Persons whose vision has changed forever for the worse, can easily fall into the trap of feeling sorry for themselves. People keep searching in vain for a cure and a way to make it like it always was. We hear them just keep asking for “a different pair of glasses that will let me see normally.” There are no magic glasses. Godmother Millie was willing to try something new if it let her enjoy life more.
She fortunately had an eye doctor who recommended that she seek vision rehabilitation consultation and she lived in a city that has a fine office for that. Many eye doctors try their medicines, their lasers and their surgery, and, when no further “treatment” will help, the patient hears the message: “there’s nothing more I can do.” That’s hard for doctors to admit, since we spend our whole lives trying to help and (like everyone else) we’re lousy losers. However, it is not the end of the line. After the initial shock wears off and acceptance begins, the next step is to seek vision rehabilitation services.
No one wants to think of themselves as “low vision” or “blind,” and the images of white canes, seeing-eye dogs, and dark glasses may even invoke our pity, but, surprisingly, our research has shown that 37% of people seeking vision rehabilitation services nationally have only mild visual impairment and are simply not satisfied with their present visual function. Even a little vision problem can become frustrating when you just need to read the account number off a credit card. Our vision isn’t just our ability to read at distance or near. That kind of vision is called visual acuity, but it’s just one component of our total vision. The other important components include the ability to make out differences between various shades of contrast, use our peripheral vision, and see well in the presence of glare. Even if you have perfect 20/20 visual acuity, if you have trouble with any of these other parts of your vision, you may experience visual discomfort, and could benefit from many of the recommendations and vision aids at vision rehabilitation.
Dr. Kaleem’s dad is a busy engineer who is always crunching numbers on a computer. A few years after he was diagnosed with glaucoma, he started having trouble reading on his computer monitor because of glare on the screen. He was really worried about falling behind in his work and the stress made things worse. He also didn’t want to tell anyone about this because he didn’t want people to think of him as disabled. He went to see several eye doctors who told him that his glaucoma was well controlled and his visual acuity was 20/20. They didn’t really know how to help him. Then, he finally decided to take the advice of his daughter who had been trying to get him to see a vision rehabilitation specialist for years. The rehabilitation specialist did an evaluation to figure out why he was having difficulty with glare and then recommended an inexpensive filter for his computer monitor. Now he is back to work like normal! He later thanked her and asked her why she didn’t tell him about the vision rehabilitation specialist sooner! Sometimes your children will say wise things and it’s good to listen to them. It’s also important to talk to your doctor about functional issues you may be having and you can even ask them if they can refer you to vision rehabilitation.
We find that many of our patients simply don’t want to give vision rehabilitation a try. Our argument is that they have little to lose and a lot to gain. You don’t know what can be done to make your life better without finding out what’s out there. Understanding what treatments, practical aids, technology and training that physicians, occupational therapists, and orientation and mobility specialists have to offer, can be empowering. With that said, one visit to a vision rehabilitation clinic will not undo the effects of vision loss from glaucoma, nor will it cure you. Like any treatment, if you are told about things to do and you don’t want to do them, you can walk away. In fact, a vast majority of our patients who have gone to our Wilmer Lions Vision Center for consultation tell us that there were beneficial treatments and suggestions that improved the quality of their lives. Like any form of rehabilitation, success may involve change, and that may be a lot to ask for. This is where the rubber meets the road. A positive attitude, an open mind and good support can make a world of difference during this process.
Problems reading, driving, and walking in dimly lit restaurants are common complaints. Vision rehabilitation addresses each activity by using lenses, lighting, reverse telescopes, special filters, camera, cell phone technology, and adaptive strategies. Nowadays, there is a lot of equipment out there to improve visual function — magnifiers with LED lights, video magnification, software, etc. To assess rehabilitation potential and make treatment recommendations, specialists can be helpful in directing the approach before spending money on devices that are not right for you. Buying things off the Internet might sound simple, but you can’t tell what you need and everyone wants to sell you their product. We wouldn’t think of buying a new car without test-driving it first. Devices may not be the solution. Training on adaptive techniques and “low-tech” solutions may be what’s necessary. You really don’t need your vision for everything — someday we’ll be able to drive without it. For now, however, instead of getting frustrated with getting the toothpaste on the toothbrush, just squeeze the paste on your finger first and then wipe it on the brush. A vision rehabilitation specialist has only your best interests at heart and is the best person to direct this part of your care.
Before vision loss, you probably used reading glasses either as part of “bifocals” (now mostly progressively changing power lenses) or separate reading glasses. Glaucoma often leaves the ability to read individual letters or words pretty much intact, but constricts the usable area of reading vision to a tiny tube of good vision in the center. On occasion, you may notice that you miss the beginning of words or it is harder to keep your place when going to the next line of print on the left. When our glaucoma colleague, Dr. Pradeep Ramulu, developed special tests for continuous reading, he found that glaucoma patients start out okay, but slow down much more than others their age by 15 minutes into their reading. This is exactly what we had heard from patients over many years: “I get really tired quickly when trying to read.” This is where careful examination can make all the difference, as it may be dry eye or cataracts that are causing the problem, rather than the glaucoma. Fortunately, the ability to see small print is often retained, but it is the loss of contrast sensitivity, the sense that someone has taken some of the ink out of the printer that’s annoying. You may find reading red writing on a blue background is impossible. This loss of contrast sensitivity is often the culprit in problems driving at night and recognizing faces at a distance.
Vision rehabilitation specialists make things better through a variety of “work-arounds” and solutions, such as better ways to light the page you’re reading and moving the book to the optimal distance for what you’re trying to see. Task lighting is often the most effective solution to enhance reading. Directed-source lights, like the full-spectrum and LED, positioned properly and close to the book, may dramatically improve reading ability. Some of our patients even contract with electricians to make lighting modifications in their home that can make all the difference. For the most part, people with glaucoma need a lot of light, but undirected light can be troublesome in certain situations.
Glaucoma patients are very bothered by glare, meaning light that comes into the eye from the side or the top, away from the center part you’re trying to use to see. Indoor fluorescent lighting at superstores, driving in and out of shady areas or adjusting to changing light when walking out of a movie theater can be worrisome and even scary at times. Understanding the effects of changing light and preparing accordingly can be helpful. Glare outdoors is best handled by hats with a brim (baseball caps or a visor are great). Sunglasses that are too dark can be worse than not having them on. They cut down the light coming directly where you want to see, but let in light coming in from the side (the glare producing stuff). If you don’t like hats to block glare, get wrap-around glasses where either the lenses or the frames block light coming from the sides. Each person is different, and the choice of filter color and light transmission can make a difference. Glare evaluations can be performed as part of vision rehabilitation assessment.
If reading small print has gotten harder, magnification may be helpful and prescribed in the form of spectacles, hand-held devices and computer adaptations. For some with glaucoma, however, bigger print is not always better. If reading books and newspapers are important to you and magnification is not effective, then you may wish to attempt listening to talking books. They are read by wonderful actors and it is a great way to continue to enjoy the classics or the latest best sellers. Talking books are widely available and many local libraries have converted from the traditional cassette tapes to providing very easy-to-operate digital players. The National Library of Congress has an excellent selection of braille and audio books that can be downloaded. The digital tapes of interest are sent to your home so there’s no need to drive to the library. Because of computer use and the advent of Kindles and iPads, reading with vision impairment has been revolutionized. Best yet, when the eyes tire, turn on text-to-speech, sit back, relax, and listen. I always tell my patients, that there has never been a better time in history to live life with vision impairment.
The great thing about watching TV and using a computer is that you can make it easier with the right kind of lens correction and by changing the device. Often using glasses prescribed for the computer, changing your work distance, getting a bigger screen, or using the right kind of software that enhances the font or reads aloud will make the activity less frustrating. Understanding what is effective for you can make life more fulfilling.
Judging stairs, steps, and curbs and walking safely can be challenging with vision loss from glaucoma. In studies that Dr. Ramulu and others working with us at Wilmer have done, we find that glaucoma patients who have significant loss of vision walk more slowly and, unfortunately, bump into things more often. People comment that they are more cautious when walking because they are afraid of falling. Orientation and mobility specialists, occupational therapists specializing in vision impairment and physical therapists can assist with fall prevention and balance, thus improving your mobility safety. Your doctor or therapist may recommend something as simple as removing the bifocal and prescribing distance-only glasses. You can be more confident while walking after vision rehabilitation assistance by learning how to use your remaining vision, by scanning effectively within your limited view and by considering the use of a walking stick or cane when out at night or in unfamiliar places. Home safety is the key to avoiding a fall that breaks a hip and puts you in the hospital. You can have a therapist who visits your home and makes many helpful suggestions about how to live independently and as normally as possible with limited vision. Some of the logical things that we don’t immediately think of, for example, are the removal of cords that trip us up or sliding rugs.
The use of high contrast can also be very helpful. Try labeling things in bright colors to make it easier to see them. Things that are low in contrast are harder to see and can be missed. Dr. Kaleem had a step in her house that a lot of people kept tripping over because they couldn’t see it; it was made of a beige color wood. One day she took a piece of yellow electrical tape and put it at the base of the step and no one has tripped on it since. The use of a simple and inexpensive technique can make your home safer for you and for others.
Driving is one of the most important abilities for many in our culture, allowing independent living in our present home setting. But how safe are you driving with whatever glaucoma has caused in your vision? Do you know what you don’t see? Many people with visual loss modify their own driving by limiting themselves to driving in the daytime and or only in familiar areas. Even with these restrictions, critical errors may occur. In one study of seniors, our group found that a substantial number of glaucoma patients had given up driving entirely. For some of them, this was probably for the best, as they could not see well enough to drive safely. As older age is associated with slower reaction times and physical limitations, it may be a good choice to find other ways to travel and shop. However, some patients who we found had given up driving seemed to have vision and capability that otherwise should not have been limiting. Legal doesn’t mean safe and safe doesn’t mean legal when it comes to driving. Talk with your vision rehabilitation therapist. There are facilities available for testing your ability to drive with your present vision that will show you and experts that you continue to qualify to drive safely (or not).
A very common thing that persons with significant vision loss from glaucoma and other eye problems have is seeing things that aren’t there. As many as one third of those with major vision loss experience seeing patterns, shapes, objects, and even people that they know are not real. These are not a sign of dementia and are not hallucinations in the sense of having a mental problem. We’re always glad when a patient trusts us enough to mention this, as older people fear that if they tell their children what they are seeing that the family will think that they have “lost it”. These images are quite simply the product of your brain not getting visual stimulation from big areas of the view of the world from which the brain was used to “hearing." The phenomenon is named after a French doctor, Charles Bonnet. Patients described seeing patterns like the shape of tiles in a floor, like leafless trees against a winter sky, or images of realistic objects. As opposed to actual hallucinations, where the person being seen might talk to you, these are all visual things. It’s as if the part of your brain devoted to vision gets bored when it doesn’t get enough input. So, it plays back patterns and “movies” of past experience into the blind zones. This happens most often when we are not thinking about much, and staying very engaged in other activities makes it happen less. However, there is no way to stop it, despite some suggestions that strong psychoactive drugs can decrease it. We tell patients that once you understand what it is, you can hopefully “enjoy the show” without worrying that you’re losing touch.
Vision loss is scary and can lead to disability and depression in some cases. In our recent research, there is evidence of depressed mood in about 22-25% of people seeking vision rehabilitation services. Depression is more common among seniors overall, but having visual difficulties makes it more likely. Seeking psychological counseling and treatment is appropriate. Some of the frustration from vision loss can be decreased by seeking vision rehabilitation services and incorporating devices and adaptive strategies into daily life. Just remember, people born totally blind have fulfilling lives. The difference in glaucoma is often one’s ability to adapt, just like Dr. Quigley’s Godmother Millie and Dr. Kaleem’s Dad.
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