Linda Tedesco knew something was wrong when her mother started asking her to come over to her house to help decipher food labels and thread sewing needles."I noticed my mom having trouble with her eyes when she started to fumble with easy tasks, Tedesco says. "The final straw was when her eye doctor told her there wasn't another prescription for her glasses. That was the best he could do. I knew we were in trouble, then."
So began a quest for answers that would end with a challenging diagnosis: age-related macular degeneration (AMD).
AMD is a progressive eye disorder that damages the macula, the area on the retina that is responsible for clear central vision. Initial symptoms of the condition are mild and include blurry central vision that makes seeing road signs, reading and recognizing faces more challenging, according to Marjan Farid, M.D., Vice-Chair of Ophthalmic Faculty at the Gavin Herbert Eye Institute, University of California, Irvine. The peripheral vision of someone with AMD often remains largely intact, even in the more advanced stages of the condition.
Diagnosing Age-Related Macular Degeneration
"The early and intermediate stages of AMD usually start without symptoms," says Farid. "Only a comprehensive dilated eye exam, usually given by an ophthalmologist, can detect AMD."
There are a number of different tests that doctors administer to determine whether a person has age-related macular degeneration
- Visual acuity test: Uses an eye chart that measures how well you see at different distances.
- Dilated eye exam: An exam that provides a better view of your retina (the back of your eye).
- Amsler grid test: A vision test that checks whether you are seeing unusual wavy lines.
- Fluorescein angiography: A test that makes it possible to identify leaking blood vessels (a sign of wet AMD).
- Optical coherence tomography (OCT): Like an ultrasound, OCT can achieve very high-resolution images of any tissues that can be penetrated by light—such as the eyes.
According to Farid, the first sign that ophthalmologists often see in people with early-stage AMD is the development of drusen—yellow deposits in the macula. As the condition progresses, scarring can occur on the macula, leading to the degeneration and eventual death of cells in that area of the eye.
Treating Age-Related Macular Degeneration
The type of treatment suggested for a person with age-related macular degeneration depends on which type they have: wet or dry.
Dry AMD is far more common and develops gradually over time. The progression of dry AMD can be further slowed by taking steps to safeguard one's vision such as wearing sunglasses and adhering to a specific dietary regimen known as AREDS2.
The onset of wet AMD is much different; usually heralded by a sudden, dramatic change in vision. Wet AMD occurs when blood vessels inside the eye begin to leak blood into the retina. A person with dry AMD can also develop wet AMD.
Treating wet AMD typically involves the injection of anti-VEGF agents such as Avastin, Eyelea and Lucentis. Laser therapy is also sometimes used for mild and moderate forms of wet AMD, but Farid says "Injections are becoming the standard of care in these patients because it is a small procedure that provides a good benefits as patients retain more vision or even gain a few reading lines again."
For those whose vision is almost completely obscured by wet AMD, there is a surgical treatment option. A doctor implants a tiny telescope into one eye, freeing up the central vision in that eye while allowing the other eye to provide peripheral vision. Farid says the surgery is similar to a cataract-correcting procedure, but warns that it comes with a certain learning curve because patients have to be trained in how to see properly with two eyes that are processing different images.
Living with Age-Related Macular Degeneration
When someone is diagnosed with AMD, the first question they often have is "Am I going blind?"
Tedesco vividly remembers her mother's reaction to AMD. "I will never forget the day my mom came out of the eye doctor exam room. We checked out and got into the car. She looked at me and broke out in tears," she says.
"AMD brings a lot of fear for patients," says Farid. "The answer is that AMD patients never go blind where the world is turning black. Rather, it's usually a diminishment in central vision that makes tasks needing ‘straight ahead' vision more difficult."
But just because total blindness is off the table doesn't mean that AMD patients and their caregivers don't face a difficult road as the disease progresses. At its worse, AMD can completely obscure a person's central vision, leaving them with only peripheral visual cues to navigate their world.
"Caregivers usually ask me about their loved one's visual function, in terms of how much the patient can do on their own and what level of care they may require. While AMD patients retain their ability to get around in the world due to their peripheral vision, many may need help with taking medications (to read the bottle), or help with making phone calls or writing checks—basically, those tasks that require fine straight ahead vision."
For Tedesco, balancing her mother's increasing needs with her work schedule and family commitments was tricky. "Scheduling mom's appointments, making sure she was okay, then making sure I was there for a game, or to make supper, or to make it home in time to freshen up and go to work was quite a balancing trick. My husband helped out tremendously. A lot of the times he had supper duty. It took all of us to make this work.
"To cope with my mom's condition, I put myself in her shoes. My dad has been gone only a short time, my mom cannot drive anymore due to macular degeneration, and now she is totally dependent on me. For a strong independent woman like my mom this was a death sentence," she says.
There are ways that people with AMD can cope with the ever-changing nature of their condition. According to Farid, you can't prevent or slow down AMD by eating certain foods or doing "eye exercises." However, avoiding alcohol and smoking will certainly help, as will consuming a diet that's rich in omega-3 fatty acids and antioxidants. Social engagement is also key; Farid suggests joining a support group for people with low vision and making use of technologies that help mitigate the effects of worsening eyesight.
Tedesco's mother was able to qualify for the telescopic implant surgery, which dramatically changed her life for the better. "It took time, but it was a remarkable change, not just to her vision, but her life," says Tedesco. "Besides being able to cook and sew again, mom can recognize faces, which I find so important for her safety in getting around in the world. But also seeing the faces of loved ones and friends—it's really restored her confidence in being part of social activities and enjoying her time with us."
There are many things Tedesco wishes she'd known before becoming a caregiver to her mother, but she says, "I'm not sure anything can prepare you to become a caregiver to anyone. Every situation is different, as is every person. I have learned much from my mom during this entire process, about myself, and the power of persistence and love."