Loss of Vision
Coping with AMD and vision loss can be a traumatic experience. This is especially true if you have just begun to lose your vision or have low vision. Having low vision means that even with regular glasses, contact lenses, medicine, or surgery, you find everyday tasks difficult to do. Reading the mail, shopping, cooking, and writing can all seem challenging.
However, help is available. You may not be able to restore your vision, but low vision services can help you make the most of what is remaining. You can continue enjoying friends, family, hobbies, and other interests just as you always have. The key is to not delay use of these services.
What is vision rehabilitation?
To cope with vision loss, you must first have an excellent support team. This team should include you, your primary eye care professional, and an optometrist or ophthalmologist specializing in low vision. Occupational therapists, orientation and mobility specialists, certified low vision therapists, counselors, and social workers are also available to help. Together, the low vision team can help you make the most of your remaining vision and maintain your independence.
Second, talk with your eye care professional about your vision problems. Ask about vision rehabilitation, even if your eye care professional says that “nothing more can be done for your vision.” Vision rehabilitation programs offer a wide range of services, including training for magnifying and adaptive devices, ways to complete daily living skills safely and independently, guidance on modifying your home, and information on where to locate resources and support to help you cope with your vision loss.
Medicare may cover part or all of a patient’s occupational therapy, but the therapy must be ordered by a doctor and provided by a Medicare—approved healthcare provider. To see if you are eligible for Medicare—funded occupational therapy, call 1—800—MEDICARE or 1—800—633—4227.
Where to go for services
Low vision services can take place in different locations, including:
- Ophthalmology or optometry offices that specialize in low vision
- Hospital clinics
- State, nonprofit, or for-profit vision rehabilitation organizations
- Independent-living centers
What are some low vision devices?
Because low vision varies from person to person, specialists have different tools to help patients deal with vision loss. They include:
- Reading glasses with high-powered lenses
- Handheld magnifiers
- Video magnifiers
- Computers with large-print and speech-output systems
- Large-print reading materials
- Talking watches, clocks, and calculators
- Computer aids and other technologies, such as a closed-circuit television, which uses a camera and television to enlarge printed text
Keep in mind that low vision aids without proper diagnosis, evaluation, and training may not work for you. It is important that you work closely with your low vision team to get the best device or combination of aids to help improve your ability to see.
Questions to ask your eye care professional about low vision
- How can I continue my normal, routine activities?
- Are there resources to help me?
- Will any special devices help me with reading, cooking, or fixing things around the house?
- What training is available to me?
- Where can I find individual or group support to cope with my vision loss?
Charles Bonnet syndrome (Visual Hallucinations)
People with impaired vision sometimes see things that are not there, called visual hallucinations. They may see simple patterns of colors or shapes, or detailed pictures of people, animals, buildings, or landscapes. Sometimes these images fit logically into a visual scene, but they often do not.
This condition can be alarming, but don’t worry—it is not a sign of mental illness. It is called Charles Bonnet syndrome, and it is similar to what happens to some people who have lost an arm or leg. Even though the limb is gone, these people still feel their toes or fingers or experience itching. Similarly, when the brain loses input from the eyes, it may fill the void by generating visual images on its own.
Charles Bonnet syndrome is a common side effect of vision loss in people with AMD. However, it often goes away a year to 18 months after it begins. In the meantime, there are things you can do to reduce hallucinations. Many people find the hallucinations occur more frequently in evening or dim light. Turning on a light or television may help. It may also help to blink, close your eyes, or focus on a real object for a few moments.
Coping with AMD
AMD and vision loss can profoundly affect your life. This is especially true if you lose your vision rapidly.
Even if you experience gradual vision loss, you may not be able to live your life the way you used to. You may need to cut back on working, volunteering, and recreational activities. Your relationships may change, and you may need more help from family and friends than you are used to. These changes can lead to feelings of loss, lowered self-esteem, isolation, and depression.
In addition to getting medical treatment for AMD, there are things you can do to cope:
- Learn more about your vision loss.
- Visit a specialist in low vision and get devices and learning skills to help you with the tasks of everyday living.
- Try to stay positive. People who remain hopeful say they are better able to cope with AMD and vision loss.
- Stay engaged with family and friends.
- Seek a professional counselor or support group. Your doctor or eye care professional may be able to refer you to one.
Information for family members
Shock, disbelief, depression, and anger are common reactions among people who are diagnosed with AMD. These feelings can subside after a few days or weeks, or they may last longer. This can be upsetting to family members and caregivers who are trying to be as caring and supportive as possible.
Following are some ideas family members might consider:
- Obtain as much information as possible about AMD and how it affects sight. Share the information with the person who has AMD.
- Find support groups and other resources within the community.
- Encourage family and friends to visit and support the person with AMD.
- Allow for grieving. This is a natural process.
- Lend support by “being there.”
*These facts are provided by the National Eye Institute (NEI) September 2015
An eye care professional who has examined the patient’s eyes and is familiar with his or her medical history is the best person to answer specific questions.
Photo licenses purchased by IMRF for educational purposes