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Living with Macular Degeneration

Reviewed by: HU Medical Review Board | February 2019

Living with any kind of vision loss - or chronic disease or condition - like macular degeneration can be challenging. Finding ways to cope with vision loss, maintain independence, have a social life, enjoy recreational activities, and go to school or work, are all part of adjusting to life with macular degeneration. With the help of adaptive devices, vision rehabilitation, and coping techniques, you can maintain your independence and keep doing the things you love.

Coping with vision loss

A medical diagnosis of any kind can be upsetting, especially if it means losing a sense like vision. Remember, there is no “right” or “wrong” emotional response.

As with any loss, you may have feelings of grief, sadness, anger, frustration and stress as the condition progresses and vision becomes more impaired. Some people even develop clinical depression or anxiety.1 This is all normal, and though you may feel isolated, you are far from being alone.

Emotional impact

Vision loss can impact your schoolwork, job, and ability to socialize. It can also make things you used to love a bit more challenging – all of which can have an impact on you emotionally, which is normal and to be expected

What can you do?

Talking to a counselor, psychologist, or social worker can help you develop coping skills and tools to adjust to life with macular degeneration. They can help you work through the stressors that arise because of macular degeneration and any general frustrations or feelings of grief or loss you may have. They may also be able to connect you to local resources or support groups.

Making healthy choices to protect your eyes

Even though you can’t prevent macular degeneration from progressing, you can make healthy choices which might help slow down vision loss and preserve your existing vision.2 Things you can do include:

  • Avoid smoking or minimize your exposure to secondhand smoke. Cigarette smoke might affect progression of the disease as it can damage or narrow the blood vessels, reducing the blood supply to your eyes.2
  • Protect your eyes from ultraviolet (UV) light when outside by wearing sunglasses and/or a wide-brimmed hat, even when it’s overcast. Especially for Stargardt disease, taking protective measures against UV light can potentially reduce lipofuscin buildup.3
  • Eat a healthy balanced diet consisting of leafy greens, yellow and orange fruits and vegetables, and fish.

Vitamin supplements

If you have Stargardt disease and take vitamin supplements, your doctor might caution you against taking one with large doses of vitamin A, as too much of this might speed up vision loss and cause more lipofuscin to build up.3

Nutritional supplements

For AMD, the Age-Related Eye Disease Study (AREDS) and the subsequent AREDS2 found that certain nutritional supplements could reduce the risk of developing advanced AMD.4 The AREDS formulation can be purchased over the counter or prescribed. Before taking any supplements, talk with your health care providers about whether this formulation is safe to take.

Adaptations and adjustments

Adapting activities and aspects of daily living can ensure your safety, provide increased quality of life, and allow you to do many of the things you love. Ask your eye doctor if they know of any adjustment classes for those with MD, or contact organizations that assist patients with low vision.5 An occupational therapist or certified low-vision specialist can also be a huge help in showing you how to make the necessary changes to make everyday activities easier on you.

Adapting your home

As your central vision decreases, there are things you can do to make your home environment safer and easier to navigate. This can include using contrast by paint landings different colors, placing dark objects against a white wall, or placing dark light switch covers on white walls.6

Other adaptations

Depending on the severity of your disease, reading from large-print books or newspapers might be helpful. There are also magnification tools for computer screens or for books. Other tools can include specialized clocks and timers, and ways to identify coins and bills when paying for things.7 Therapists can also teach you orientation and mobility tricks and techniques, or teach you how to use a cane or guide dog if necessary.

Assistive devices

These are many adaptive devices that can help individuals with vision impairment improve their visual function in order to perform everyday tasks. These can include magnifying devices, electronic reading machines, telescopic eyeglasses, and even electronic eyeglasses with video cameras that can be customized to assist visually in a variety of scenarios. Which device might benefit you depends on your degree of visual impairment and the specific task at hand.

Living with macular degeneration

If you or a loved one has been diagnosed with macular degeneration, don’t despair. There are many adaptive techniques and devices that you can utilize to cope with your condition.

Talk with your eye doctor about the current stage of the disease, what this means for vision impairment, the projected course of progression, and potential specialists that can help you or your loved one make the necessary adaptations to help make life a little more visually manageable.

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