Jay Copp 2015-04-16 05:15:29
The Chicago Lighthouse takes to the road and displays its low vision tools, devices that help people reclaim their lives. Escorted by a friend, Mary Parenti, who keeps her white hair closely cropped, traveled to a sprawling retirement center near Chicago. She ambled past the center’s busy, noisy common room jammed with booths and tables of hospitals, pharmacies and dental practices touting their services for seniors. Her main destination at the annual wellness fair at Friendship Village in Schaumburg was the low vision road show of the Chicago Lighthouse. A few years ago Parenti woke up to go to her longtime job at IHOP and, to her shock, discovered she could barely see. She had to quit her job. Macular degeneration was the culprit. Now she can’t see out of one eye, and her vision in the other is terribly blurry. Parenti has moved beyond dismay, anger and resignation. She is making do. The magnifying machine she owns allows her to read and perform simple tasks like writing checks. But the machine is cumbersome, and she struggles to write neatly with it. Parenti walks without assistance, but at the low vision road show today are a brigade of walkers and wheelchairs, a tableau of snow-white hair, wrinkled faces and hearing aids. Demure and docile, grateful for attention, the seniors are here for what is not visible at all—their vision loss. It’s a loss that has led to other losses—connections with their normal lives, once taken for granted but now part of an irretrievable past. The room reserved for the Chicago Lighthouse showcases hundreds of items to make life easier for those with low vision. There are talking watches and meat thermometers, recordable labels that can be attached to food containers, CDs and clothes, and ergonomic pens that make wide, black lines. The prices are reasonable, the variety, design and utility impressive. Arrayed along two walls are the most useful and more expensive lifelines to the wider world: magnifiers, both desktop and portable. The fancier models, which cost thousands of dollars and like the other tools are not covered by Medicare, convert text to speech, smooth, mellifluous speech that enables users to read the newspaper, a novel, even a soup can or pill bottle. Low vision is disorienting, maddening and distancing, disconnecting people from normal routines, habits and other people. Low vision not only steals sight but also robs people of the vibrancy and richness of everyday life. Parenti huddles at a magnifying machine with Tom Perski, the Lighthouse’s amiable, low-key dean of rehabilitation. He knows Parenti is well beyond the denial stage. She’s here. Others probably should be. Or will be. “My dad has two close friends who now have low vision,” says Perski. “They’re depressed. They’re angry. He told them, ‘Call my son. That’s his whole career.’ But they’re so depressed and angry they can’t reach out. Not yet.” Many people diagnosed with low vision have a hard time accepting their predicament. “I understand the stages. They do ‘doctor shopping.’ They say to themselves, ‘Maybe if I go to another doctor, I’ll get a better answer,’” says Perski. Their families grasp at straws, too. “One of the first things the family does is buy a huge TV. But it’s better to sit real close to a smaller TV,” he says. Families often struggle with acceptance longer than patients. On this day Perski meets with a mother and son. The mother effusively thanks him for all his help and tells him how the magnifying machine has changed her life. The son, loving but misguided, asks Perski “whether something could be done” to help her regain part of her sight. Retina specialists in or near Chicago routinely tell their low vision patients about the Chicago Lighthouse for the Blind and its resources. But patients steer clear of it for a while. “People have a stigma about blindness," says Perski. "They'll say, ‘I’m not blind.’ Our actual name is the Chicago Lighthouse for People who are Blind or Visually Impaired. They say, ‘I’m not going there.’” Even when they finally muster the will to visit the Lighthouse or one of its road shows they’re often not ready to concede they need help. “They see a machine and say, ‘I’m not buying that. It’s too big.’ They push it away. They aren’t ready for the technology. By the second visit you see progress. On the third visit they have their checkbook out, and they’re ready to buy.” Four staff members of the Lighthouse made this trip to Schaumburg. The Lighthouse did 33 low vision road shows last year. As many as 100 people attended. The Lighthouse also dispatches occupational therapists to homes to teach people how to use their tools and to suggest changes or improvements to make homes safer such as getting rid of throw rugs. But the center of activity is the Lighthouse itself. The 110,000-square-foot complex in Chicago includes a vision clinic where patients receive exams, psych-social support services and occupational therapy. Each day 250 clients visit. Many others call its toll-free national help desk or listen to the weekly Beacon Show, a one-hour radio show for people with disabilities. A regular segment, “Tom’s Corner” features, of course, Tom Perski, who discusses his favorite gadgets and new tools. The Lighthouse staff drove to Schaumburg in a van purchased by District 1A Lions. Lions are huge supporters of the Lighthouse. The committee that directed the opening of a retail store for low vision tools at the Lighthouse a decade ago was named after a Lion. The (Bill) Strickfaden Committee, its name a testament to the influence of Lions, still helps oversee the store in Chicago as well as a new one in the suburb of Glenview. For longtime Chicagoans, Schaumburg is an ironic place to hold a low vision fair. A far northwest suburb, it was mostly undeveloped until the 1970s. Popular journalist Bob Greene poked fun at it as the “land beyond O’Hare [Airport].” Lots of young adults, including flight attendants and pilots, lived there and enjoyed the single life. Demographics have shifted not only in Schaumburg but nationwide. “The National Eye Institute calls it [macular degeneration] an epidemic,” says Perski. One sixth of the population over 65 has macular degeneration. It’s one in five for those over 75 and one in four for those over 85. With 78 million Baby Boomers to hit 65, the number of people with macular degeneration is expected to double by 2050 to a staggering 22 million. Those numbers have created a huge market. Perski attends an annual trade show in which companies display their low vision tools. The market is growing so fast that companies from Asia and Europe are now wellrepresented at the fair. A well-known expert, Perski served for three years as a consultant to the creation of the Prodigi, a state-of-the art, text-tospeech digital magnifier with a detachable tablet. The Schaumburg road show is busy enough today that Perski delays eating his sack lunch to attend to visitors. Gifted with a comforting manner, Perski quickly approaches visitors to quietly offer his assistance. When asked if they carry this or that, he ushers them to the table with the right device and shows the visitor how it works, answers questions and offers reassurance. Most visitors to the road show are from outside Friendship Village. Unfortunately, since the Lighthouse is selling products, a town statute prevents it from stuffing the mailboxes of Friendship Village residents. Ellen Lukey, a sprightly 90-year-old, is a Friendship Village resident. She’s interested in a magnifier. “Do I have to move the newspaper?” “The tray,” says Perski, deftly showing her how. “Is this the brightest it can go?” “No, you can’t make it brighter.” “Will it last for a while?” “It will last a long time. These bulbs are LED bulbs. They don’t get hot. They’re supposed to last 100,000 hours.” “Why is this one only $900?” “It’s a used model. It’s two years old.” Perski does the opposite of a hard sell. Customer satisfaction means all. “Try it for three weeks. If you like it, you can keep it. You have 30 days to decide.” Lukey decides to buy a magnifier, and a Lighthouse staffer will carry it to her room today and explain again how to work it. The average person with low vision will need six or seven tools— from handheld magnifiers to talking blood glucose monitors to CCTVs or desktop magnifiers, says Perski. “I ask people what are the most important things you want to do. I call it the top 10. Sew? Read the Bible? Read the newspaper?” he says. “I ask them to make a list when you wake up in the morning. Is it putting toothpaste on your toothbrush? Do you have a problem punching the numbers on the microwave? They might come up with 40 things. We’ll narrow it down to 10. With our resources we can deal with 8 or 9 of the 10.” Bernice McBride, 65, of nearby Arlington Heights, wants to be able to read more easily. She’s not happy with her magnifier. “It’s a pain in the neck. You have to keep folding the newspaper. You can get only one column at a time.” McBride once fixed her machine. She did it the old-fashioned way. “It was hard to read. I punched it. It’s been fine,” she says. McBride’s children have told her repeatedly that she deserves better. “They’ve been after me to do something,” she says without rancor. Today she’s only window-shopping and leaves without a purchase. Lavonne Verkade, sharp and alert at 93 and dressed in green with a jaunty St. Patrick’s sign on her walker, has come to see what’s available as well. “I can’t afford it,” she says of the fancy portable magnifier she is eying. “I don’t play the lottery.” Verkade uses a magnifier to read books and to peek at her recipe when baking cookies. It “takes twice as long” to make cookies now with her magnifier. But she likes to bake. As she sees it, she needs to bake. “I have a friend who drives me around. I pay him in cookies.” Parenti, the former IHOP employee, leaves with a promise from Perski to mail her a handheld magnifier. “How much?” she asks. “No charge,” he replies. Perski was able to surmise she was of limited means, and the Lighthouse has a small fund to occasionally assist patients. Among the last visitors of the day are the Thakkars, a father and daughter. The daughter translates for her father, who is from India. They flit from display to display, and Perski duly follows them and answers her queries. The father once tried glasses with a telescopic lens but would get a headache within five minutes of wearing them. “He can’t see faces. He wants to see faces,” the daughter tells Perski. There are no other options, he tells them. She asks about watching TV. Perski says he does it by sitting very close to the screen. She doesn’t understand. Perski explains he had lost so much vision he had to give up driving when he was 25. He can see shapes. Now 62, he’s been legally blind for more than three decades. “I guess he shouldn’t feel so bad,” she says, motioning to her elderly father. An inherited eye condition took Perski’s sight. “I went through all the stages—anger, denial,” he says later. His vision loss enables him to empathize with his patients. “I have a master’s in counseling. I do undercover counseling,” he says with a smile. “I have a huge advantage. I can say things maybe a counselor can’t. I can say, ‘I know how you feel.’” Perski often does not tell road show visitors about his blindness. Some never catch on: he’s that adept at moving around, handling objects and interacting with people. But he’ll volunteer it if he perceives it will help reassure or comfort a person. Perski understands that blindness is real but disability is relative. People who one day feel sorry for themselves may one day realize that’s not productive. He’s seen that realization happen in an instant. He’s invited to self-help groups a 10-year-old who is blind. “There’s no whining that day. ‘What can I complain about when I didn’t lose my vision until I was 78?’” Digital LION Read how the Lighthouse assisted the father of a wellknown Hollywood actress at lionmagazine.org. Watch an interesting video on the Chicago Lighthouse at lionmagazine.org.
Published by International Association of Lions Clubs . View All Articles.
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