Staying on the Move When You Have Wet AMD
If you have wet age-related macular degeneration (AMD), the loss of central vision can leave you nervous about leaving your home and enjoying the activities you’ve always loved. But you don’t have to settle for an isolated, limited existence! Mobility experts can teach you strategies to get you moving out in the world again, even as they train you how to use canes and guide dogs. Are you ready to get safely from point A to B, even with decreased color recognition, clarity, and contrast sensitivity—all hallmarks of wet AMD? Let us guide you.
What Is an Orientation and Mobility Specialist?
Unlike a low-vision therapist, who helps mostly with indoor tasks like cooking, cleaning, and reading, a mobility specialist takes you outside the home, teaching you skills that will help you figure out where you are—and how to safely get to where you want to go. Heading outdoors may feel daunting at first, says Jamie Maffit, COMS (certified orientation and mobility specialist), director of orientation and mobility at Salus University in Elkins Park, PA. “You may not see a step that’s right in front of you, or the end of the sidewalk where the curb is.” A mobility specialist prepares you for these challenges, and more.
Is Every Mobility Plan Unique?
Very much so! A mobility specialist will do an assessment of your specific needs, challenges, and visual impairment, says Yolanda Smith, COMS, an orientation and mobility specialist with the Alabama Department of Rehabilitation Services in Montgomery. Expect to answer a lot of questions, she says, about what you can and cannot see, if you’ve ever fallen, and whether you have other disabilities that could affect travel. You’ll then be asked to perform a few tasks, like climbing stairs or strolling down the sidewalk. Finally, you’ll share your goals and expectations so a mobility specialist can customize a plan for you.
Will a Specialist Walk Me Through My Day-to-Day?
Absolutely. A mobility specialist maps out routes and walks them with you, from your front door, to the bus stop, and beyond. You’ll learn techniques to safely cross streets, analyze busy intersections, and scan for cars with auditory cues, says Maffit. You’ll even go grocery shopping together, and learn to listen for the checkout, or detect the bakery by smell. (Hello, doughnuts!) Live in a senior community? You’ll memorize the best ways to get to the cafeteria and activity rooms, then back to your apartment. Your instructor will build your confidence until you can venture out on your own.
Will a Friend or Family Member Train With Me?
You’re not in this alone. Getting around with a partner is called the “sighted guide” technique, says Smith. Together, you’ll learn the “coffee-cup grip”—you grab your partner above his or her elbow, using four fingers on the inside of the elbow, with your thumb on the outside. Then you learn to tune into one another’s cues. For instance, you’ll notice a slight rise when your guide—maybe a friend, spouse, or family member—steps up onto a curb. Your guide trains to walk two steps ahead of you and give you verbal or physical warnings about any obstacles ahead.
How Do I Learn to Use a Cane?
Learning to use a “white cane”—lighter and longer than a typical support cane—begins with finding the right length and tip for you, Maffit explains. That depends on your height (you’ll get measured floor to sternum, adds Smith), stride, and personal preference. You’ll learn how to hold the cane in front of you and use your wrist to swing the tip as you travel. The cane should be in sync with your feet. “If the cane’s moving, your feet need to be moving,” Smith notes. This takes concentration at first but becomes automatic with practice.
What if I Don’t Want to Use a Cane?
The short answer? Don’t use one! Cane know-how is just one technique among many that a mobility specialist can teach you to up your independence game, says Maffit. In fact, even people with wet AMD who do choose to use a cane must first master what are known as pre-cane skills—including how to get around with the help of another person (your chosen guide), how to systematically search for dropped objects, plus self-protection techniques, says Smith. These skills alone can improve your ability to safely get around. So if you can’t see yourself with a cane, that’s cool. Skip it.
Will I Learn to Work With a Guide Dog?
You may need to go to a guide dog school—fur, wagging tails, fun!—where you’ll be trained to care for the dog and use it to guide you. Your mobility specialist can accompany you on your routes with the dog, helping you apply what you’ve learned to real-world travel, Maffit says. A guide dog is faster than a cane, Smith believes. “But it’s a big responsibility,” she adds. “And you’ll need orientation and mobility training first.” Big caveat: A guide dog is only useful and safe in the hands of someone who’s already well-trained in getting around.
What if I Panic When I’m Alone?
A mobility specialist will teach you how to solicit help—first with role-playing, then with supervised lessons. “It’s learning how to phrase questions,” Maffit says. “If you need to get across the street, you can ask, ‘Is this Main Street in front of me?’ By saying ‘in front of me,’ you identify the street.” And when the person offers to help you cross? “Say exactly what you need,” Smith adds. “Often, people pull or push you where you need to go. It’s safer if you tell the person, ‘I’ll grab your elbow. I just need you to guide me.’”
How Can My Own Arm Protect Me?
Sometimes, you really are your own best defense. If you have wet AMD, a mobility specialist can teach you how to position your arm to act as a bumper against kitchen counters, table edges, chairs—anything you might bump into, says Maffit. “If your arm is positioned appropriately, you won’t get a table corner in the gut,” she promises. “And, if you shield your head in the right way as you bend down to find a dropped object, you’ll avoid a table corner in the face.”
How Do I Find Objects That I Drop?
Everybody drops stuff, but people with wet AMD might have difficulty finding what has accidentally fallen from their hands. A mobility specialist can teach you what are called “systemic search patterns” to help you find that lost item, says Smith. One technique is to place your hand on the ground and start making a small circular motion, gradually expanding the circle until you find what you’re looking for. Another uses both hands in a grid-like pattern—in and out, up and down, says Smith.
How Do I Find a Mobility Specialist Near Me?
Every state has an agency in charge of vision rehabilitation (find yours here through Vision Aware) that provides orientation and mobility services to those who are eligible, says Maffit. Military veterans can go through the Department of Veterans Affairs. But, be prepared: There is often a waiting list, simply because there aren’t enough orientation and mobility specialists to go around, says Maffit. Can’t wait? Some non-profit organizations also provide the service. Ask your eye doctor to help you find one, or use the Vision Aware directory.
Will I Need a Referral?
Unfortunately, orientation and mobility services are not covered by health insurance, says Maffit. So, no, you won’t need a referral. However, you will likely need to meet certain criteria to qualify. For example, many state agencies require you to meet the threshold for legal blindness, Maffit says. A low-vision examination by an eye-care specialist can help you determine whether you’d qualify, Maffit says.
How Much Does Mobility Training Cost?
If you arrange for a mobility specialist through the state, probably nothing, says Maffit—the cost of both the training and the equipment is covered. But if you hire an independent mobility specialist, it may set you back anywhere from $150 to $200 for the initial assessment, then $80 to $150 per hour for training—plus the cost of travel and any equipment you use, says Smith.
How Long Will I Work With a Mobility Specialist?
It’s up to you! You may train for weeks or months, depending on your goals. Once you’re trained, you can always go back to your specialist as your circumstances change and you need to learn new routes. Still, any amount of training—even just a session or two—can be valuable for people with vision loss. One of Smith’s students, an avid football fan who lost his sight, attended his first game in five years after working with Smith for just three sessions. That’s a goal we love to see accomplished!