How are you reading this article? Are you using a magnifying glass? As you read, are you experiencing pain behind one eye? Are you seeing the words clearly, or is the page blurring in front of you? If you’re having any of these symptoms, you’re not alone. More than 50% of all people with MS will encounter some vision problems at one time or another. Luckily, only a much lower percentage have serious long-term loss.
For me, the darkness descended slowly—as if a dark gray window shade were being pulled down over my eyes until nothing was visible. That, along with intense pain, was my introduction to optic neuritis and MS. After being put on high-dose steroids, my vision slowly returned. The 8th time optic neuritis occurred, my neurologist and I decided to try waiting it out without the steroids. My vision never came back. Sixteen years and 11 bouts of optic neuritis later, I have been left blind in one eye and with only central vision in the other. This is low vision—the diminished ability to see contrast and color values, to read, watch TV, or carry on many normal activities of daily living.
Tell your doctor immediately
Dr. Laura Balcer, assistant professor of Neurology at the University of Pennsylvania Medical Center, emphasizes the importance of consulting your physician, neurologist, or neuroophthalmologist at the first sign of vision problems: “It’s important to determine whether or not the symptoms are really MS related, and to explore immediate treatment options.” And Dr. Jinaan Al-Omaishi, assistant professor of Neurology at the University of Nebraska Medical Center, added, “Medical care to maintain vision in the good eye is also very important.”
Coming to terms with vision loss can be daunting, but after interviewing medical experts, others with vision loss resulting from MS, and health professionals—including my sister and coauthor Evelyn Katz, an occupational therapist—I have information that I hope you will find useful.
The 3 common types of low vision
According to Dr. Elliot Frohman, director of the MS program at University of Texas Southwestern Medical Center, the visual disturbances people with MS commonly experience are diplopia (double vision), nystagmus (involuntary jerky eye movements), and optic neuritis (inflammation of the optic nerve).
Among the 3, optic neuritis is the most common. Because the optic nerve transmits visual information to the brain, inflammation or demyelination (destruction of the protective myelin sheath covering nerve fibers) interrupts nerve transmission and may result in blurred vision, color blindness, decreased depth perception, blind spots in one’s visual field, pain behind the eye with eye movement, difficulty seeing low contrast, or difficulty seeing in bright light or semidarkness. Optic neuritis flare-ups are usually not permanent, and usually affect just one eye at a time per episode. Dr. Frohman said, “Most patients have significant recovery following episodes of optic neuritis.”
The most common treatment is intravenous corticosteroids. Steroids can’t prevent these vision problems from happening, but they are effective in hastening improvement and limiting the loss. Dr. Mark J. Kupersmith, director of Neuroophthalmology at Beth Israel Medical Center in New York City, said, “Most MS doctors would prefer their patients to take a course of steroids to bring their vision back quickly.” However, both Drs. Kupersmith and Frohman point out that the results of a large study of optic neuritis treatment showed little difference in the recovery of those who were treated and those who were not treated with steroids.
Diplopia and Nystagmus
Diplopia, or double vision, can occur without warning, while nystagmus, or involuntary jerky eye movements, is often preceded by dizziness. Both conditions result from weakness or incoordination of the eye muscles due to MS damage in the areas of the brain that control coordination of movements. Double vision may limit the stereoscopic vision needed for depth perception. In addition to eyestrain and headache, this may cause problems with walking and driving.
Pendular nystagmus, a rarer, chronic form of nystagmus, can be especially disabling, because the person experiences a constantly moving environment. The standard treatment for double vision or involuntary eye movements is similar to the treatment for optic neuritis: a course of corticosteroids for acute episodes.
Coping during a low-vision episode
For double vision, it’s often helpful to patch one eye or to use opaque tape over one lens on a pair of prescription eyeglasses. Prism glasses can also be helpful, but they’re quite expensive and may work for only a short time. More common adaptations, which can also be helpful for acute bouts of nystagmus because they make focusing easier, include mounted magnifiers, large-print books, and a variety of other large-print or high-contrast low-vision aids.
For optic neuritis, in addition to the common adaptations, you may also need to outline doorways, steps, and wall switches with tape or markers. High-contrast (dark on light/light on dark) or textured tapes like Velcro work better than color to distinguish objects from surroundings. Dark glasses and nonglare lighting also help make the most of temporary low vision.
Vision loss and depression
What if the vision loss isn’t just temporary? When I realized that my vision loss was permanent, I experienced a series of emotions: denial, anger, frustration, sadness and, finally, acceptance—about the same feelings I went through upon hearing my diagnosis of MS.
It is healthy and necessary to go through that process, but you should also be aware that vision loss can lead to real depression. Another of my sisters, Dr. Tina Render, who is a psychiatrist, told me, “People with vision loss are at an increased risk for depression, and their social isolation can contribute to it.” If you think you might be depressed, seek professional help. Therapy can help you come to terms with your loss so you can, in time, get on with living.
The 3 best guides
When modifying your environment to better mange low vision, you should think: contrast, lighting, and texture.
Contrast, the difference in the lightness or darkness of colors within an object or between objects, is essential for providing cues as to where an important object sits or where the edges of doors or steps are. Objects that are similar in brightness or darkness are very difficult to distinguish.
Low-level lighting or general diffuse lighting can worsen the situation significantly. Use lamps that can aim the light right where it’s needed. And try different types of lighting. Incandescent and halogen work best for me. Fluorescent light can produce glare. If you must use it, try substituting a fullcolor spectrum bulb. Eliminate glare by making sure that light won’t reflect off mirrors and shiny objects.
Textures of different types can further define edges, buttons, controls, and other objects within your environment. Masking tape, felt tape, Velcro, and Hi-Marks paint (which is available in assistive catalogs) all provide easily identified textures.
Specific living/coping strategies
When you’re on the go
My husband has a travel business, and we roam far and wide. Here are a few tips that really help me.
- When traveling, pack a magnifying mirror, a magnifier, a clip-on book light, a nightlight, and a small flashlight. For long hotel stays, take along a lamp bulb in a high wattage.
- Take along books on tape and music cassettes with a player.
- For peace of mind, find out where the accessible restroom is whenever you are in a new setting.
- At the movies, take both a flashlight and a light-colored sweater. Put the sweater on your seat when/if you get up, to help you identify it.
A social tip
I tell new people I meet that I don’t have complete vision, so they won’t think that I’m rude if they wave and I don’t respond.
At your desk
I’m a writer and lecturer, and do quite a bit of my work at home. Here’s how I handle it.
- Use adhesive-backed, large-print numbers and letters (called Zoom caps) on your computer keys.
- Add lighting to your computer or desk; there are even magnifying lights that clamp onto a desk.
- Relabel your files using a black felt-tip marker on white file folders.
- Larger numbers are available for your phone, or special phones can be ordered that are voice activated or with programmable numbers.
- Use Hi-Marks paint, which dries with a textured surface, to mark machine settings that you use often.
- Find out about low-vision computer enhancements.
In the kitchen
I always enjoyed cooking and baking, and was afraid I wouldn’t be able to continue. With adaptive equipment and safety lessons, I am still able to turn out gastronomic delights. Here are some ideas that work.
- Pare down what you have in your cabinets and shelves.
- Reorganize shelves, putting the items used most frequently in the front.
- Label refrigerator and freezer shelves for ease in retrieving things.
- Buy drawer organizers in contrasting colors from the items you store in them.
- If your budget allows, have dishes and glasses in both a solid light color and a solid dark color—and use with foods and beverages of the most color contrast.
- Buy a reversible cutting board (1 side black/other white) for safer slicing and chopping.
- Keep your fingertips curled under when slicing, or buy a pair of fish-cleaning steel-mesh gloves. They prevent cuts.
- Purchase measuring spoons and cups with large contrasting numbers, or practice measuring directly into your hand.
- Mark often-used appliance settings with textured paint or a glued-on bead or rhinestone.
- Differentiate bottled foods from bottled cleaning products by using different, distinctive bottles.
- Before turning on the stovetop, place the pan on the burner.
- Before reaching into a lit oven, use a fork or spoon to tap and feel where the rack is located. Long oven mitts offer burn protection.
- If possible, replace clear glass utensils with colored ones that are easier to see.
Looking your best
I worried that my low vision would prevent me from keeping up my personal care needs. Don’t worry. Even with vision problems, there are ways to accomplish almost everything. Once again, organize.
- Have someone help you go through your closet and remove the things you don’t wear. Then separate the rest by color, and develop a marking system.
- Hang belts, scarves, or neckties with the outfits they match.
- Sock and stocking colors can be identified by using a safety pin system: for black—no pins, brown—1 pin, navy—2 pins. Same for shoes, but mark the soles or insides with adhesive dots.
- For makeup, get an organizer, and develop a color-coding system.
- In the shower, soap on a rope is helpful, or use a wash mitt with an opening for the soap so that you won’t be dropping it and then having to find it. Put shampoo in a different bottle from the conditioner so you know which you are using.
Get involved in your local National MS Society chapter. Volunteers are always welcome, and you can arrange a flexible schedule. You’ll also have access to information on research, new medications being tested, and ways to cope with your MS.
A final thought
The future does seem hopeful for all of us who live with MS and its uncertainties and challenges. Someone wrote: “We have a choice every day regarding the attitude we will embrace for that day. I am convinced that life is 10% what happens to me and 90% how I react to it.” And so it is with you and me. Life can go on, and you can feel like the whole, competent person that you are.
Creating a rich life
Attitude: After conversations with many others who have had significant vision loss because of MS and are coping well, several themes came through. First and most important was attitude: Don’t focus on what you can no longer do; focus on what you can do.
Keep doing the things you enjoy: It’s very important to decide what activities you enjoy the most, and to find a way to make them “doable.” The key may be an OT (occupational therapist) with low-vision experience. OTs can help you modify the activities that are most important to your quality of life, or help you find adaptive devices that you can use, to keep doing them. You will need a doctor’s referral.
Organize! To make the most of your efficiency at home and in the office, organization is the key, and “de-clutter” is the watchword. De-clutter means pare down—give away, throw away, or sell all the stuff that you have accumulated but don’t really need. Then organize what remains in ways that work best for you.
Make choices! Sue Dacey, another OT, said: “All too often when people are dealing with an illness, they de-emphasize the hobbies and interests that they enjoy. But these things sustain their passion for life. When we are stressed, we need these outlets to help us cope.”
Ask for help! Vision loss does not mean that you have to let someone else do everything for you—but do ask for help when you need it.
Be patient. A friend with low vision commented, “You have to be patient and realize that whether it is losing mobility or losing your eyesight, it is going to take up to a year before you adapt to whatever is going on. At least it did for me.”
For additional information
Joyce Render Cohen and Evelyn Render Katz, OTR/L, live in Omaha, Nebraska. They often give talks on living with low vision and traveling with disabilities. Gayle Render Dinerstein lives in New York City, and does freelance writing.
This article originally appeared in the Winter 2001 (Vol. 19, Issue 1) issue of InsideMS. (Last updated January, 2004)