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Patient Education

There is Hope, There is Help; However. . .

You may be frustrated and feel like there is almost no hope, because you have an extremely serious vision loss. On the other hand, you may have fairly good visual acuity, but may also be discouraged because of frustrating vision challenges due to a visual field loss, a stroke, or an eye disease. Regardless of the cause of your vision loss, the type of loss, or the extent of your loss, you may wonder if there really is help, and may start to question if there is hope.

Be assured that indeed there is help, and there is hope. There are people who really do care. There are service providers who really can help. And there is reason to hope that you or the one you care about can continue to function, to a large degree. Most likely, no doctor, no surgery, and no pair of glasses can make your vision perfect again. But there are services, there are people, and there are devices that can help.

Perhaps the starting point is the desire to want to make things better. The key is to be motivated to want help. One ophthalmologist that I work with told me about 12 years ago that he finds that the patients who do best in low vision care are those who are motivated to want help. That was a “no brainer” remark, but it is completely true. If you don’t want help, or you don’t want to improve, the chances for making improvement are much more diminished. So the first “however” (which is part of the title of this article), which accompanies the fact that indeed there is help, is that “however, you need to want help, and to accept help, before there can be hope.”

Decreased visual acuity is not the only reason a person may have a serious vision loss. A noted ophthalmologist and retinal specialist, Donald Fletcher, MD, who has been featured here in VisionAware previously, makes a classic point: “Vision is more than acuity.” And conversely, vision loss is more than the loss of visual acuity. Vision problems can be due to decreased visual fields, whether it is a peripheral field loss, a central field loss, or the loss of half (or other variants) of the visual field. Peripheral field loss may be from glaucoma or retinitis pigmentosa. A central field loss may be due to macular degeneration, Stargardt’s disease, or a number of other eye conditions. A loss of half of the visual field may be due to a stroke, head trauma, or a glioma. Vision problems may also result from diminished contrast sensitivity function, which is perhaps the least discussed, yet one of the most significant causes of difficulty. Loss of contrast is generally present in macular degeneration (AMD), diabetic retinopathy, cataract, and a host of other eye diseases. Interestingly, a person can have pretty good visual acuity (e.g. 20/40), yet have greatly diminished contrast sensitivity function, or a nasty visual field loss from a central scotoma (“spot”). It may even involve a bothersome “ring” scotoma, where instead of a total area of loss, there is an “island of geographic sparring” near the center, where the person often tries to look to see faces or text. It becomes very frustrating, despite the fact that their visual acuity may be relatively good. So their visual acuity may be the least of their problems. Yet if they tell the doctor or the technician (or their spouse or children) that they have trouble reading, the technician (or children) probably think “you shouldn’t have that much trouble reading, since you have 20/40 (or 20/60) visual acuity.” Therefore, the technician or doctor probably doesn’t refer them for low vision care. And the spouse or children may not encourage them to get help yet. But they are indeed having real problems.

Because this is a hidden disability, and their visual acuity is still quite good, the person may begin to feel that no one understands. They may begin to believe that there is no help, and no hope. That may be hard to comprehend that they feel quite hopeless, if all that we consider is the person’s fairly good visual acuity. But if family members, technicians, or others were to see slides or results of the person’s visual field loss or their contrast sensitivity function, they would quickly realize why the person is indeed having trouble reading and doing certain tasks, despite their comparatively good visual acuity.

The help for this person may come in the form of improved illumination for all tasks, as well as enhanced contrast. It may come through eccentric viewing training, by learning to look off to the side, around their central “scotoma” or spot. It may come from the combination of a helpful magnifier or digital device and good illumination. For a person with a stroke and a resultant hemianopia (loss of half of the visual field, usually present in both eyes—homonymous), the best help may come from training in eccentric viewing and tracking, paired with tools like an inexpensive “typoscope” (less than $1), to help keep your place on the line. But the message is, regardless of the type of loss or extent of the loss, there is help, there is hope!

For a person with a very serious visual acuity loss, and perhaps also a serious loss in visual field and/or contrast sensitivity function, there is still help and hope. There is helpful training. There are incredibly strong illuminated magnifiers, microscopic spectacles, loupes, telescopic monoculars and glasses. There are some marvelous portable digital magnifiers that can be used anywhere to read almost any text, even with extremely poor vision. There are desktop closed circuit TV systems (CCTV’s) that have wonderful 24” HD monitors. Most people assume that the main function of a CCTV or a digital magnifier is to magnify print, which of course they do very well. But perhaps one of the most important benefits and advantages is that they enhance the contrast of anything being viewed. Thus, a person with pretty good visual acuity (e.g. 20/60 or 20/80) may not need a lot of magnification, but because their contrast sensitivity function is very poor, a CCTV or a portable digital magnifier is a godsend for them, because it makes things brighter, and enhances the contrast.

For those with almost no vision, there are a cadre of options with speech output devices. Some CCTV’s also come with OCR scanning and speech output. Other devices are stand-alone units with a scanner and speech output. Almost every month new options and devices are introduced, and it is always exciting to follow the latest new devices.

Which leads the other “however,” which again is part of the title. Sometimes a person with a vision loss wants help so desperately that they are willing to pay almost anything for a solution. They are almost looking for a miracle. News programs on TV or magazine articles often feature the latest head mount cameras for the visually impaired, or other things like implants, almost making them sound like a miracle solution for a person with low vision.

The lead ophthalmologist at one of the eye centers where I work got very concerned that some of her age 80-100 year old patients with low vision felt they got scammed by a person selling very expensive telescopic glasses, claiming that they would help them to read again. She had me write an article for the local paper about “What is low vision rehabilitation?” In it, I made the statement that help for low vision does not need to be expensive. So for my second “however,” don’t look for a miracle solution. Your eye doctor and service providers can’t make things perfect for you, nor can they bring your vision back to what it was at age 20. But they can help make things better. While there is help, and there is hope, it does not necessarily need to be expensive. And it will probably not produce a miracle solution.

Like success following a hip replacement, or in learning to play the piano, it takes practice, it takes persistence, and it takes patience. It takes hard work. But there is help. There is hope.

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