Coping

What You and Your Family Should Know After You Are Told You Have Macular Degeneration

When someone learns that he/she has macular degeneration, it is usually a big surprise, a frightening thought and very confusing. The trauma of losing even part of one's sight is daunting because we all know that our vision affects each minute of our life. Clearly, the world is not the same as it used to be and there are no easy answers.

Often decisions must be made and the patient and those who care about him/her frequently feel overwhelmed. It is important to remember that there are many ways of dealing with this disease.

Get More Information

Get materials and suggestions from your ophthalmologist. Medical professionals often have excellent patient education materials. The books, brochures and Web sites of reputable organizations can provide valuable information, as well. Many people find that speaking to others with macular degeneration, and their caregivers, is helpful in understanding how to cope with the disease.

People must train themselves to see things differently. As each issue arises, a solution should be sought to answer the need. In the past, one pair of glasses may have been of use for everything — now, one pair of glasses may be needed to read, while a different pair of spectacles may be necessary when writing or using the computer. A special computer may be the answer to receiving information.

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Low Vision Rehabilitation

Low Vision Rehabilitation helps people to make the most of their remaining vision through the use of specially designed optical systems, counseling, training and social services.

Research shows that millions of people are partially sighted and that no more than two percent use any type of low vision rehabilitation service. This type of treatment can make a difference to people's daily lives. Vision rehabilitation services can help to prevent falls, burns, and other injuries. It can positively impact healthy behavior in diet, exercise and disease management. The Alliance for Aging Research identifies vision impairment as one of the four leading causes of lost independence among older people. There is probably nothing more important that one person can do for another than to help with new information, education and the ability to increase one's dignity and self-worth.

A low vision counselor may help concerned family and friends understand what a person diagnosed with macular degeneration is going through, as well as educating them as they struggle to understand why a loved one cannot see them approaching but can detect a dime that someone has dropped on the floor or a speck of dirt that someone did not sweep with the broom.

The pattern of vision loss due to macular degeneration is different for each person; therefore it is vital to recognize that each person's visual impairment is unique to him or her. Because a specific magnifying device "worked miracles for your aunt," it may not be helpful for your neighbor - and - when it does not work, the affected person may feel badly. It is wise to have each person analyzed by a competent Low Vision Specialist who will help him/her to discover the most beneficial devices and services. Occupational therapists can help with activities of daily living by rearranging the kitchen cabinets, marking steps (dotting washing machine and stove dials, etc.). Healthcare research has shown that joining a support group can be very helpful. Joining people with the same concerns and problems, to discuss issues and solutions, enable those with macular degeneration to better cope with their situation.

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Community Resources

Learning about the resources in one's community can provide many additional helpful services. The search for solutions and examination of resources is focused on keeping the affected person as independent as possible. Often several ideas will have to be investigated to learn the best solution for the particular situation.

There are many sources devoted to enabling people to maintain their independence. The following list may be of help in developing creative solutions to everyday situations:

Large-print Checks

This request may be made with the manager or customer service representative of your bank. You or your bank may order a supply of large-print checks through

Deluxe Checking Company
Toll-free number 800-451-1455

Note: You must obtain your "routing transit number" from your bank or credit union before placing your order.

Reading Materials

The National Library Service for the Blind and Physically Handicapped (NLS) of the Library of Congress (LOC) has a program called "That All May Read." The Web site address is http://www.loc.gov/nls each community's regional library is the basic organizational unit in the network.

Example:

The Library for the Blind and Physically Handicapped
Free Library of Philadelphia
919 Walnut Street
Philadelphia, PA 19107-5289
215-683-3213

This organization makes every attempt to adapt its services to fill the individual needs of its "readers." There are no charges for services or equipment. Cassette players, disc players, lightweight headphones (for private listening) will be loaned. Cassettes, and recorded discs are available. Large-print books (some in foreign languages), disc magazines, cassette magazines, and hobby subject areas are also available. Call to request an application, which must be signed by your ophthalmologist or Low Vision Specialist.

All postage and handling of these materials (usually on a monthly basis) is free of charge.

Recording for the Blind 609-452-0606

Recording for the Blind, located in Princeton, NJ, will record books not available on tape, by request.

City, County or State Offices for Blindness and Visual Services can provide a great variety of services, once the legally blind person is properly registered.

Personal subscriptions to large print publications can be obtained from:

The New York Times Large Type Weekly
Reader's Digest Large Edition
Time in Large Print

Large Print Books

Barnes & Noble and Borders now stock an extensive collection of fiction and nonfiction large print books.

The Jewish Heritage for the Blind provides large-print editions of the High Holiday prayer book, Haggadah, etc. They are available free-of-charge (one per family) and can be obtained from:

The Jewish Heritage for the Blind
1655 East 24th Street
Brooklyn, New York 11229

Fax your request (with a note from your medical doctor or eye specialist confirming that you have a vision problem) to 718-338-0653

Lighting

A proper lamp is very important. An architect's lamp that uses a 100 watt bulb is often helpful. Avoid halogen lamps because of their glare, heat and the possibility of fire. The architect's lamp should be positioned so that the shade is between you and the reading material-not over your shoulder.

Low Vision Aids

Low Vision Aids can help people to increase the sense of competency that they feel they have lost. Low Vision Product Catalogues can be obtained from:

Gold Violin
Gadgets for Independent Living
1-877-648-8400
http://www.goldviolin.com

LS&S
Learning, sight and sound made easier.
1-800-486-4789
http://www.LSSproducts.com

Maxi Aids
Products for Independent Living
800-522-6294
http://www.maxiaids.com

Independent Living Aids, Inc.
Can-Do Products
800-537-2118
http://www.independentliving.com

It is important to keep in mind that these catalogs are most helpful to buy non-optical devices, such as watches, clocks, telephones, etc. A Low Vision Specialist should individually prescribe magnifiers and other optical low vision aids.

Free Telephone Information

Many Telephone Companies offer free Information and free dialing service if documentation from your ophthalmologist is provided.

Low Vision Computers and Devices

There are many "portable" magnifying devices, closed circuit televisions, video magnifiers, and video telescopes for reading enhancement and watching TV. They can magnify text, reduce glare and increase readability. Some models aid in writing, doing handiwork, viewing information on the computer, "reading" the labels on medicine bottles and cans of food. Personal reading machines convert printed text to high quality speech. They can speak text aloud from your books, magazines, business statements and other printed materials. A Low Vision Specialist can advise you concerning the best device for your particular need.

Making Your Home Safer

Markers can make your home safer! Marks can be made with white Velcro, or brightly colored stickers. Identify the most frequently used dial settings on your oven (350 degrees) or your thermostat as well as radio and TV settings. By painting doorways, stairs, switch plates, door knobs, etc. a contrasting color you increase the contrast and make any object more visible and therefore easier to see. Bright nail polish can help to distinguish keys.

Avoid multicolored backgrounds and fabrics - cucumber slices and peas on a flowered plate are more difficult to find than on a plain white plate. Pens, forks, scissors are easier to see on a plain colored table covering than on a plaid tablecloth. Decreasing pattern results in decreasing color confusion-it also increases contrast.

Transportation

In planning retirement, one of the suggestions has always been the consideration of living in a place with good public transportation. When vision is lost, people worry about being independent, getting around, often feeling it hard to ask for help. Public transportation, as well as taxicabs, can be a viable alternative to driving. It is also helpful to know that for the cost of maintaining a car (an average of about $6,500 a year by some estimates), one could spend $125 a week on cabs, public transportation or to buy gas for family members and friends who drive you places.

Making a weekly plan with a local cab company, Para Transit service, etc., to take you to the hairdresser, to lunch with a group of friends, religious services, etc., can help to maintain a "way of life."

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