Losing Sight, Then Losing Touch

When you’re past 80 and losing your central vision to macular degeneration, as the eight members of this support group are, life throws up plenty of roadblocks.

“We live in a do-it-yourself-type society,” lamented Doris Zaslow, who’s 92. “I can remember when, in a grocery store, someone behind the counter asked you what you wanted. Now, if I can’t see what’s on the supermarket shelf, I’m at a complete loss.”

Across the conference room table, Ruth Levine, 80, voiced more social concerns. “I’ve often thought I come across to people in my building as cold and unfriendly. Distant. But I don’t see them.” She wishes they’d walk up and say, “Hello, Mrs. Levine, I’m your neighbor.”

Macular degeneration, the deterioration of cells in the macula, a part of the retina, takes people’s central sight, making it hard to see faces or read text or see street signs. The risk increases with age: Only 6.4 percent of adults have intermediate macular degeneration in their 60s, and 12 percent in their 70s, the National Eye Institute reports. But nearly a quarter of the over-80 population is affected.

This painless disease takes two forms: dry and wet. The latter is more destructive, but drugs can reduce or prevent the progression of wet macular degeneration (so named because it involves blood vessel leakage). For the dry form, medicine has little to offer.

Small wonder that when given the diagnosis, “people feel anger, frustration, anxiety, embarrassment, all the emotions,” Dr. Roy Cole, director of vision program development at the Jewish Guild for the Blind in Manhattan, told me in an interview. Depression is common, too.

In the three and a half years that Rachel Meltzer, a social worker, has been leading this twice-monthly group at the guild’s office, its members have talked about a lot of tough stuff, from everyday problems (if you never learned Braille, you don’t know which elevator button to press) to fears of disability and dependence.

Yet most people with macular degeneration can still function reasonably well when they learn strategies that help them get around, discover a host of useful programs and devices from specialized glasses to adaptive computer software, and find others who understand their disappointments and accomplishments.

Esther Sternberg, 93, showed me her talking wristwatch. “The time is 2:20 p.m.,” it announced in an authoritative baritone. Mrs. Sternberg can read, too, using an electronic video magnifier or closed-circuit television. “I can put in any book, any letter or newspaper, and I can see in black and white or color,” she said. “But it’s an expensive device.”

Suzette Gabay-Antonio, 90, said, “It should be more affordable for people.” Such readers generally run $2,000 to $3,000, Dr. Cole said — and Medicare doesn’t pay for low-vision aids.

A support group can’t take the place of such vital equipment. But, said Dr. Cole, “it gives people a chance to share experiences, to learn from each other, and to see that you can do things you didn’t think you could.”

Happily, a very comprehensive Web site called mdsupport.org provides not only a ton of information but links to more than 120 affiliates that operate hundreds of support groups in 33 states (and more overseas), plus telephone and online support groups, Webcasts and more. Rehab facilities, vision organizations and medical centers offer support groups, too.

At the Manhattan meeting, other members urged Mrs. Levine to take pre-emptive action and explain to her neighbors why she seldom greets them.

“I tell people myself, ‘I don’t see well,’ ” said Mrs. Zaslow.

“I tell people I’m legally blind,” added Roslyn Gladstein, 86. (Nevertheless, she and Mrs. Zaslow and Mrs. Sternberg attend monthly art museum tours for those with visual impairments and other disabilities, led by specially trained docents. If you have to cope with macular degeneration, New York City is where you want to be.)

They’ve been hearing, for years, about promising new treatments and devices. “We’re sort of resigned to the fact that we won’t be here when these ideas come to fruition,” said Annabelle Greenberg, 88.

Resigned?

“You never know,” said the guy sitting next to her.

“Speak for yourself,” said Mrs. Zaslow.