Los Gatos Weekly-Times

Photo Illustration by George Sakkestad

This is how Dr. Tim Coughlin, a Los Gatos optometrist, looks through the eyes of a patient with macular degeneration.

Sight Scene

Some are now seeing the world through strange- looking glasses

By Dave Clarke

'My, what big glasses you have, Grandma. And weird, too." If retold today, the classic fairy tale might tell a different story, especially if granny is one of a rapidly growing number of people, mostly over the age of 50, and the wolf is a capricious affliction known as macular degeneration or, in laymen's terms, low vision.

Granny's glasses may no longer be the ovular specs we remember our grandparents wearing (or even the hipster far-out versions worn in the '60s). What is evolving instead for some segments of the population is cumbersome high-tech headgear known as an L.V.E.S. (Low-Vision Enhancement System), which seems better suited to complex microsurgery than the simple tasks of reading a newspaper or negotiating a sidewalk.

The timing couldn't be better. The population is aging, and this technology can be a godsend to those afflicted with macular degeneration, an ailment that is generally age-related.

Our eyes separate vision functions into two types, central and peripheral. Normally, these disparate tasks are melded smoothly between the retina (the screen used to receive images at the back of the eye) and the visual cortex in the brain. Transitioning between the two is achieved with little or no thought.

But for those with macular degeneration, the macular cells--those million or so nerve endings hardwired to the center of the retina that allow us to read or watch television--have decayed. Viewers can be left with black spots or gaps in their field of vision, and a veiled film can distort even those larger images previously crisp and clear. Once-familiar faces become shapes without distinguishing features, causing dismay in old friends; strangers are mistaken for longtime acquaintances, causing confusion.

To those with low vision, men's rooms are sometimes indistinguishable from women's rooms, which upon closer examination are sometimes really just telephone booths. For the afflicted, the simple, reassuring step of making eye contact is a fond, fuzzying memory; knowing exactly what you look like is a luxury just beyond reach.

Affecting as many as 15 million people, age-related macular degeneration (A.M.D. or sometimes A.R.M.D.) is now the largest irreversible cause of legal blindness (vision registering 20/200 or worse) among people over 50 years old in the United States. With baby boomers hitting the mid-century mark in larger numbers every day, some researchers predict the condition may reach epidemic or near-epidemic proportions, an additional 6.3 million people being diagnosed over the next 30 years or so.

But if the numbers of those afflicted with A.M.D. are growing, so too is the technology to help them live "normal" lives.

Dr. Tim Coughlin, a Los Gatos opto-metrist, says the field is blossoming because of improvements in miniaturization, magnification, electronics and new headborne devices, such as video cameras. Fitting clients with low-vision enhancement systems is a growing part of his practice, Coughlin says.

Out of the Corner of Her Eyes

Bright, vibrant tourmaline eyes are the first thing one notices about Elaine Stanley. The president of the board of trustees of the Los Gatos Museum Association has eyes so clear and crisp in appearance, it is difficult to fathom that the vision she experiences through them is "like looking at an ink-blot test." Unlike people who develop macular degeneration in their older years, Stanley was diagnosed with myopic degeneration, a condition which can lead to macular degeneration, at the age of 22.

Since then, life for her ("like for most others in one way or another," she's quick to add) has been a series of adaptations and adjustments.

Driving is now limited to daylight hours, short distances and familiar streets. Measurable, steadily advancing vision loss colored her and her husband's decision years ago not to have children. Despite generous offers from her employer and her co-workers to help her compensate for the anomaly, increasingly fuzzy responses from her macula and a chronic weariness in the eyes were the overriding factors when Stanley sadly tendered her resignation from a gratifying 15-year career in human resources.

"It's depressing," Stanley says frankly, "all of a sudden having a chunk of your vision disappear." And though her doctors won't confirm it, she firmly believes the more she pushes herself to use her vision, the more it seems she loses precious sight. The effect of this "you use it, you lose it" quandary is a perpetual inner debate about how to use her remaining vision.

In Stanley's case, at least some of the answers were clear. Traveling the globe, literally taking in the sights she had always wanted to see, or see one more time while she still could, became a priority. Pursuing personal goals--learning to speak Chinese, ice skating, kickboxing--moved several notches up on the must-do list.

After making her decision to withdraw from the workforce, Stanley braved the realities of adjusting to life in a sight-diminished world. Enrolling at the Braille Institute in Southern California and completing the mobility training program offered by the state Department of Rehabilitation, she joined the legions who file clothing by color in their closets; who strategically fold currency by denomination; who have re-marked appliances to distinguish one setting from another. Stanley's life now comes equipped with a whole new range of devices--closed-circuit TVs to enlarge print on a page, special screens to enlarge computer monitors and voice-recognition software to interpret the information encapsulated in the digitized files. And while she's had to learn how to enjoy books in a different way--aurally now (a process she says is more time-consuming and, though still worthwhile, somehow less satisfying than curling up with a bound edition by the fireplace), Stanley refused to give up her love of books.

The once avid reader settled herself onto the board of the Association for the Stanford University Library, an organization specializing in preserving antiquarian books.

Working on a Cure

Three stages of the disease exist--wet, dry and pigmental. The pigmental form of A.M.D., essentially a blister under the retina, should receive regular observation from a qualified attending physician. The dry stage, while less serious, affects more people, blotting out patches of vision. The wet form, caused by blood vessels leaking fluid below the retina, though not as common, often requires immediate attention in the form of laser surgery, to cauterize the leakage and attempt to stem the loss of vision. A long-term success rate of only 50 percent for the surgery means effective treatment is still elusive in many cases.

Dr. Alex Irvine, professor and vice chairman of the ophthalmology department in the UCSF School of Medicine, says, "We have some chemicals that prevent cell death. If we could deliver enough medicine to the affected area for long enough, say time-released over a year or so," he continues, "we could inhibit the deterioration of the rods and cones in the eye."

Though frustrated by the lack of successful therapies he has to offer patients, he's optimistic that the substantial number of colleagues across the country engaged in research, both biochemical and genetic (researchers are only now developing concepts for genetic discovery and treatment), will yield effective tools in the next few years.

The disease, which, according to Irvine, seems partial to fair-skinned, blue-irised individuals, should be treated as soon as possible. Edges or corners which begin to appear wavy or rounded may signal the dry form of A.M.D. Cloudy vision may be a sign of the wet form of the disease, possibly requiring immediate laser surgery. Only recently, with limited success, has the procedure been used preventively.

While a second medical opinion from a qualified physician is always a good idea when serious quality of life issues arise, Irvine says macular degeneration is easy to diagnose. He recommends people not jump from doctor to doctor looking for other answers.

Coughlin says that the devices now available may look "oddball," but for now, they offer the best hope for those with macular degeneration to function normally.

Technology is liberating

"I have several patients with macular degeneration," Coughlin says, "who can actually drive cars with small telescopes mounted in their glasses." According to Coughlin, the telescope allows those who wear them to focus on specifics, such as street signs. Some patients wear small telescopes around their necks to use when they need to focus on something specific that's out of their range of vision.

For many patients, overcoming the psychological barrier of having to use bizarre devices is overwhelming. Some people say they can't play bridge any longer because it's embarrassing to have to use the devices. Then there are those who accept their condition and are happy to be able to play bridge again regardless of the strange-looking devices.

Meanwhile, optometrists and ophthalmologists say that avoiding exposure to bright light seems to help curb the disease's advancement. According to Coughlin, some studies also suggest that quitting smoking and eating a diet rich in antioxidants and green, leafy vegetables have may be helpful in prevention.

Camera Obscura

Not all with A.M.D. suffer without finding some icing on the cake. James Thurber, author of the whimsical Secret Life of Walter Mitty, derived no small pleasure from the "peculiar advantages" of his lifelong defective vision. He found "the kingdom of the partly blind is a little like Oz, a little like Wonderland." His was a world where bridges appeared to rise in the air like balloons; cats, it seemed, rolled across the street in striped barrels. More than one art historian has speculated that the distinctive view of the world credited to the impressionistic genius of Claude Monet owed its success at least partially to the gifted painter's distorted visual acuity.

In any case, if symptoms of macular degeneration begin, experts on both sides of the ophthalmologist's scope agree on several points. While biding their time as researchers scramble to find solutions, Irvine and Stanley suggest that A.M.D. sufferers explore the numerous magnifying and computer-related aids--especially those whose software can be customized to the individual. Patients who learn to use their peripheral vision better may also ease some of the challenges posed by the disease.

[ Back to Contents Page | Los Gatos Weekly-Times Home Page | Archives ]