Barbara Simerl found her vision gradually getting worse, and eventually, glasses were of little use. She felt her twin passions of reading and needlepoint slipping away. “I knew it was bad when I couldn’t read my Kindle anymore,” Simerl recalls.
She reached out for help to a doctor who prescribed an expensive, binocularlike device that allowed her to read just one word at a time. His seeming indifference to the challenges she faced was the last straw. During one checkup, Simerl had enough. “I literally asked him to leave,” she recalls. “And that’s when I called Johns Hopkins.”
Her close friend’s husband was familiar with the Lions Vision Research and Rehabilitation Center at Wilmer and recommended she visit. Since starting at the center, Simerl has never looked back.
She was placed in the care of Judith Goldstein, O.D., associate professor of ophthalmology and director of the program, and Kristen Lindeman, O.T., a low-vision occupational therapist, who have continued to care for her and provide solutions to maximize her independence. Goldstein prescribed specialized high-powered lenses for Kindle reading, and Lindeman has since prescribed a desktop magnifier that helps Simerl read her mail and other essential documents. “It’s very personal for me,” Simerl says. “Kristen really cares. She’s come to my home several times.”
The mission of the low-vision program is to help patients to read, walk safely, drive, cook or manage their everyday activities to the best of their ability for as long as they can, says Goldstein.
Often, those solutions include technologies like audiobooks, high-powered glasses and machines that magnify text to the point the patient can read again. Other times, the solution involves teaching the patient to rely on other senses as much as possible. “We call it sensory substitution,” says Goldstein. “Replacing one sense with another.”
Home visits are a big part of the Lions Low Vision Center’s therapeutic activities, Goldstein says, because making modifications to daily living requires a therapist to see patients in their everyday environment.
Simerl has now been a patient for many years and has become a donor to the Lions Low Vision Center. Her gifts have allowed the low-vision team to completely renovate one of its rehabilitation rooms, and she has included the Lions Low Vision Center in her estate planning.
“Mrs. Simerl has made an enormous difference for all our patients,” Goldstein says.
Verdell Clark’s path to the Lions Low Vision Center was similar to Simerl’s. As she grew older, she noticed her vision was getting worse but brushed it off. She would repeatedly return to the drugstore for reading glasses of ever-higher magnification, but soon, even they were not sufficient. Turning to a nearby clinic, Clark learned her prescription —3.25, she remembers distinctly—was too great even for the clinic to fulfill.
“For something that high, they told me I had to go to ‘low vision,’” Clark recalls them telling her. “I didn’t even know what ‘low vision’ was.”
She did some research, and that led her to Wilmer. Goldstein says that most low-vision patients have not always had vision problems. Many patients have conditions that are age-related and that gradually progress over time, so the ongoing adjustment is often the hardest part.
In addition to recommending technology use and retraining strategies, Wilmer approaches low vision in another significant way: through networking. Initiatives involve building a social circle to help strengthen people’s confidence and adjustment to vision loss. As with many medical conditions, there can be a stigma associated with low vision, and people can feel profoundly isolated.
It helps others with low vision to have role models like Clark and Simerl to see that they can succeed and remain independent, says Lindeman, adding, “It lets them know that they are not alone.”
She recently initiated a program—known as the See Us Network, or SUN—designed to bring together people with low vision and educate the community about the spectrum of vision impairment that defines low vision.
SUN features a strong mentor-mentee aspect in which newer patients are paired with established patients so they can learn from each other. They meet in person and use the internet, phones and social events to keep up communications with each other. Anyone can be a mentor or a mentee. “In fact, many people are both, helping others while being helped themselves,” Lindeman says.
Clark is a member of SUN. She serves on the board and as treasurer of the network. Her husband has even gotten involved. The experiences of that “second-tier” low-vision support community are just as important to the strength of the group as the patients themselves.
“These people know what low vision means to their loved ones,” Lindeman says. “And they have lots of ideas on how to help.”