Maurine Hegsted was only 52 when her doctor told her the problems she was having with her eyesight were more complicated than needing a new pair of glasses. She had macular degeneration.
Macular degeneration among people 60 and older is the leading cause of blindness in the United States. A rarer form can steal sight from children and teenagers.
It destroys central vision. Though someone with macular degeneration is unlikely to lose all peripheral vision to the disease, there is no cure. Still, treatments can minimize vision loss and sometimes even improve vision, said Dr. Michael P. Teske, an ophthalmologist at the Moran Eye Center. "We can usually hold ground."
The more common, less severe form for adults is "dry" macular degeneration, in which yellow fatty deposits called drusen appear on the macula, the central part of the retina. Blind spots, while progressive, are more gradual with the dry form. Less common and even more devastating, Teske said, is "wet" macular degeneration. Newly forming blood vessels behind the retina leak, killing cells in the macula.
At the time of her diagnosis, Hegsted, now retired from the University of Utah where she was a professor in the College of Nutrition, decided to hold onto the good news that she was unlikely to be completely blind. She "went to work learning to ride buses" while she could still see reasonably well. When her vision problems were becoming severe, she turned in her driver's license, which shocked the people at the bureau. Most people fight to keep their license, fearing a loss of independence.
Reading became very difficult. She got a hand magnifier and that helped. Next she lost her ability to see faces. "I don't know if I've passed a friend up or not."
She decided to educate herself about available help — and educate those around her about her limitations.
"If I talk to somebody, I say I'm talking to you but not looking at you. I look off to the side, because I see better that way.
"When we meet again," she tells them, "please say your name because I won't know who you are unless you have a very peculiar hairdo or something I can recognize."
She took classes at the Center for the Blind and found them worthwhile.
There are also support groups for people with macular degeneration.
In the years since she developed the condition, she's traveled extensively to places like France and China. She's gotten on with her life. She continued to work until just before her 70th birthday.
Hegsted set out to adjust to the disease from the get-go. She's unusual, according to Julia Kleinschmidt, who says that getting used to macular degeneration and not becoming socially isolated is a huge task.
"It's bad enough that you can't drive, which cuts down on your ability to get out and about," said Kleinschmidt, who has a doctorate and is a licensed clinical social worker at the Moran Eye Center. "Faces are blurred, so you may not acknowledge someone, and they think you're stuck up. Some people are no longer comfortable" going places "and pull into themselves. They get depressed."
To make the transition, Kleinschmidt says three major tasks must be accomplished: Let go of disruptive feelings. Access the services, tools and "sometimes the skills that can help you." And learn to deal with a sighted world. "Like it or not, you may have to become an educator," she said.
For people who see normally, macular degeneration's effects are hard to understand. For years Kleinschmidt heard variations on this theme: "I know mother doesn't see well and can't read, but I think she's putting on a bit. If there's a thread on the carpet, she sees it."
In fact, a thread in her peripheral vision would be perfectly noticeable. It says nothing about her diminished central vision, Kleinschmidt said.
A woman with macular degeneration got on an elevator with a guide dog. She hit the button for the floor she wanted and got off when she arrived. Two women in the elevator began to rant about the woman "pretending to be blind" when she could see the elevator button. Kleinschmidt told them about the eye disease — and that their interpretation couldn't have been more wrong.
Her message for people making the adjustment caused by vision loss is both simple and profound: All these things can be dealt with. As Helen Keller noted, humans are born with an endless capacity for making the best of things.
Teske notes that "people with macular degeneration do a lot more than they think they can. But they need help. Unfortunately, at a certain point the doctor says 'there's not anything more I can do, so goodbye.' They're left hanging. That's why a support team is extremely important. Anything I do probably will not make you better, what we have to do is get you to the point where you can function as best you can."
One of the most important tasks is finding services and tools that can help.
Kleinschmidt refers patients to programs that provide low-vision services, including a program by that name run by the state. Simple, inexpensive handheld devices like lighted magnifying glasses can make all the difference.
There are also higher-tech devices that help.
Steve Gerritsen owns Rocky Mountain Low Vision Services in Salt Lake City. And he sees people who have macular degeneration all the time.
They come in because they have trouble reading their mail or a newspaper or seeing straight ahead. They have blurred vision. They're sometimes frightened and usually frustrated.
So he shows them machines, from the simple to the more complex. There's the Merlin, for instance, put out by Enhanced Vision Systems. It magnifies visual material by up to 60 times and shows it on a 20-inch monitor — "far more magnification than most people with macular degeneration need," he said.
Some customers, like 87-year-old LaNell Maynard, use it to read newspaper articles that interest them. Maynard had always been independent before macular degeneration, she said. It was frustrating not to be able to pick up a piece of paper in the house and know what it is. Merlin solved that.
Other Merlin owners use the device to thread needles and do their fingernails, look at instructions on food products, read product warnings on over-the-counter drugs, Gerritsen said. They can see the amount due on bills or use it to help write checks.
There are portable "helpers" like the Prisma, a collapsible unit you can take along and plug into a TV somewhere. Or a PocketViewer by Pulse Data that provides seven-times magnification in a unit not much bigger than a calculator.
Enhanced Vision Services even came up with a unit called the Jordy that amounts to special magnification eye glasses. It works best indoors with controlled light. Outdoor lighting can be problematic.
No one device helps everyone. What will help depends on the nature of your vision loss and your lifestyle and what tasks you want to accomplish, Gerritsen said.
Prices vary widely. The handheld unit, for instance, sells for around $900, while the Merlin is more than $2,300. The Utah Assistive Technology Foundation can help those who need it with five-year, no-interest financing, Gerritsen said.
No cure is hovering on the horizon. But treatment and the knowledge base continue to improve.
There's some evidence that antioxidant supplements may slow deterioration. People who smoke have more rapid vision loss, so not smoking helps. Some centers are studying effectiveness of a light form of laser treatment that reduces the number of drusen found in dry macular degeneration. Studies are also being done on a process called rheopheresis, where patients are hooked up to a machine that filters out certain large molecules, thought by some to play a role in decreasing blood flow into the macula. It may help, but it's too early to say for sure, Teske said.
There's evidence that increasing the levels of two macular carotenoid pigments, lutein and zeaxanthin, found in dark green leafy vegetables such as broccoli and spinach and yellow and orange fruits and vegetables such as peaches, persimmons and corn, will protect the eye from oxidation and aging damage, as well.
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