Tuesday, December 28, 2010

Life can be good, even with vision loss

Jane E. Brody's NY Times column:

Jim Vlock is on a mission. Afflicted 15 years ago with macular degeneration, a retinal disorder that erodes central vision and thus the ability to drive, read, watch television and recognize faces, Mr. Vlock is determined to spread the word about the many devices that can help people like him live more fulfilling, independent and productive lives.

Mr. Vlock, now 84 and a longtime resident of Woodbridge, Conn., told me in an interview that he sought help at three of the country’s best medical centers: Yale, the Cleveland Clinic and Columbia. And though they tried to treat his vision problem, none told him there were ways to improve his life within the limits of his visual loss.

“These institutions attempt to cure, but they are not particularly interested or knowledgeable about providing ways to overcome low vision,” he said.

His wife, Gail Brekke, said: “We had been spending all our time focusing on a possible cure — stem cells, laser treatments, injections — we were willing to go to the ends of the earth. We didn’t want to live in a land of resignation. We thought there must be something out there to help. But like most of medicine, the specialists we consulted were not knowledgeable about helping you live your life without a pill or scalpel.”

Spurred by his distress over having to give up reading and television, as well as driving and playing tennis, Mr. Vlock, a retired steel executive who describes himself as “a proactive person,” found what he needed on his own. A technician who teaches people with visual impairment how to use computers suggested he seek help at the Veterans Health Administration’s medical center in West Haven, Conn., where he was entitled to free care as a Navy veteran of World War II.

With Mr. Vlock, I visited this full-service center, where he said he underwent “the longest and most comprehensive evaluation” he’d yet received — a full six hours of testing — along with a plethora of visual aid devices, including six pairs of specialized glasses for different tasks, a talking watch and a magnified travel mirror to help him shave.

Most important, he learned to use a computer with an enlarged keyboard and magnified screen for reading text and e-mail; if he can’t make out what’s on the screen, it will read to him out loud. (He has since donated three of these computers to the public library and local residences for the elderly.)

Now Mr. Vlock can again read and enjoy television, theater, ballgames and e-mail. Not only did the V.A. provide the tools to make this possible; it also gave him the instruction and training he needed to function well at home and at work, where he is a consultant to Fox Steel, the Connecticut company he previously owned.

He learned of still other services through a chance meeting with David Lepofsky, a lawyer in Toronto who has been blind since he was a teenager yet completed law school and a master’s degree at Harvard. In a long e-mail to Ms. Brekke, Mr. Lepofsky wrote, “There is no reason why, despite his vision limitations, Jim should not be able to read what he wants, including daily newspapers, in a relaxing way and without having to become a high-end computer scientist.”

With Mr. Lepofsky’s guidance, Mr. Vlock acquired a Victor Reader Stream, a device that downloads and plays all manner of audio books. He gained access to the National Federation of the Blind’s newsline; using his telephone touch pad, he can listen to articles from newspapers throughout the country as early as 8 a.m. each day.

“This was a transformative experience,” he said. “I’m now able to do all these things.”

The V.A. rehabilitation programs are meant to help blind and low-vision veterans and active service members regain their independence and quality of life and to function as full members of their families and communities.

Lisa-Anne Mowerson, acting chief of the agency’s Eastern Blind Rehabilitation Center in West Haven, calls the center “the best-kept secret.”

“It’s hard for people to find us,” Ms. Mowerson told me. “A person’s vision problem doesn’t have to be service-connected for them to receive care here. Their vision problem could be due to diabetes or glaucoma” — or, as in Mr. Vlock’s case, macular degeneration, a familial condition that had afflicted his father and two uncles.

There are 10 advanced-care vision centers for veterans around the country. The center Ms. Mowerson runs serves the entire Eastern Seaboard, with referrals from 13 veterans’ centers that provide more basic low-vision services.

“We don’t just give devices, we give training inpatient and out, at home and at work,” Ms. Mowerson said. “We may spend 20 hours with individuals to make sure they know how to use the devices properly and can cope independently, which takes training and practice. These devices are available in the community, but people are not trained how to use them.”

Mr. Vlock said, “There’s a dedication here — you don’t feel like you’re inconveniencing anyone.”

For nonveterans with visual impairments, more is lacking than just adequate training. Also absent is insurance coverage.

As with hearing aids, neither Medicare nor private insurance covers these tools and services, a failure of our penny-wise and pound-foolish medical care system that often ends up costing society far more in lost wages and personal care.

“The private sector has to step up,” said Kara Gagnon, director of low-vision optometry at the V.A. in West Haven. “Success is directly tied to the quality of the exam and the training — two hours doesn’t do it.

“We teach patients where their sweet spot is — the part of their remaining vision through which they can see best — and how to access it so they can see faces and read fluently. Too often we get patients who’ve been unable to read for 20 years, who’ve lost their jobs, their wives, their homes.

“Our philosophy is to get patients to do things for themselves, including cooking and laundry, so they can cycle out of depression and feel fulfilled. We ask about their goals, what they enjoyed doing before they became visually impaired. I can get them back to everything except driving a car and flying a plane.”