My life with geographic atrophy

By Margret Krakauer, as told to Keri Wiginton

I recently changed my hobby from painting to writing. One of the first things I wrote for my memoir was: It’s a race between losing sight and losing hearing.

I am 79 years old and had cataract surgery ten years ago. That’s when my doctor diagnosed me with age-related macular degeneration (AMD). I started showing signs of geographic atrophy (GA) probably 5 years later.

I have been legally blind in my left eye since childhood, which has nothing to do with GA. But I learned early on to adapt to vision loss. I always wonder if my early vision difficulties helped me adjust to life with AMD.

But I think I reacted to my diagnosis like everyone else: I was shocked. I was afraid. I didn’t understand it.

I’m still worried about the vision loss, but I’m fine. I feel mentally prepared for the future, which until recently did not include treatment for GA. And maybe something will come into my life that will be even better than this newly approved drug or those that may soon follow.

Additionally, people who lose central vision in both eyes can still travel, work, cycle, and lead independent lives. Just knowing that other people with GA are doing all of these things is reassuring.

And who knows what will happen to me in the years to come. Maybe I won’t go back to painting, which I did for hours, but maybe I’ll go back to sculpture. It feels good to be able to think about that.

Life through my eyes

I have no problem cooking by myself. Menus can be tricky, although I haven’t eaten at a restaurant in the evening since before the pandemic. But I can enlarge the takeout menus on the computer or ask my husband to tell me the choices.

I can read most things with my regular glasses. I’m learning mysteries of nonfiction and fiction in a 10-week lifelong learning course. I found all but one of the books electronically.

And even though I prefer e-books, I can still read articles in print. I’ll just need a lot of light.

I have difficulty seeing in low light situations, both indoors and outdoors. We started brightening up the house, especially in the areas where I spend a lot of time. But I don’t drive after sunset. That’s because it’s dark, but also because of the way reflections from other light sources hit my eyes.

I slowly began to lose my ability to discern certain colors. For example, not all yellows are a problem. But the pale yellow looks white to me.

Sometimes the letters disappear from the right side of my field of vision when I read or watch TV. I guess it’s because I have more damage in that part of my macula. Sometimes if I blink or move my head, letters reappear. But it’s a little disconcerting to know that I have holes in my vision.

And when I look at the Amsler grid – an eye chart I use at home to test for vision changes caused by AMD – I can see wavy lines.

Many people with wet or dry AMD talk about dark spots. I see something similar if I’m in a room and the TV is on but the overhead lights are off. I’ll see a cloud of electrical noise or tiny dots that move a little.

But like everyone, I have good days and bad days. And my eyes get tired much faster than before. Some days I can’t read in the evening, so instead I watch stupid stuff on TV. And that’s very good.

Where to find help

I have been married for 53 years and my husband helps me in all kinds of ways.

For example, I wear hearing aids. He will clean them or change the filters for me because I can’t see enough detail to do it without a magnifying glass. Maybe it’s lazy of me, but he’s not complaining.

He will put needles in me because even though my acuity is 20/30, which is pretty good, small things are hard to see. The eye chart they use at the doctor’s office is not a good indicator of how I view daily life with AMD or GA.

When we go out, my husband points out steps, stones, or other things that I might not notice. And he still keeps me in the dark.

We also have this unusual flashlight that we use. It has several bulbs that diffuse a wide angle of light. We keep it in the car so we can pick it up if we walk somewhere at night.

I also feel comfortable asking my doctor for information about GA or any low vision services I may need. Even if he’s not the type to talk. And it suits me because I can come home and connect with people through my Facebook community.

I’m part of a group called Our Macular DeGeneration Journey. People are as nice as can be. And I learned all sorts of things about the world of GA through discussions with other members, including low vision specialists like optometrists and occupational therapists.

It was on Facebook that I first heard that new drugs were coming. And as for others in the GA community, this news felt monumental. I know there is no way to reverse my vision loss, but knowing there is a new treatment has given me a new lease of life.

I’m not saying that I’ve ever given up on living well with low vision. But I gave in to the idea that my eyesight would only get worse. Maybe now I have a good chance of having good eyesight for the rest of my healthy life.

Hope for the future

My retina specialist thinks I am a good candidate for pegcetacoplan (Syfovre) injection, the new drug approved to treat GA. I can’t wait to start getting the injections soon as I have noticed more blind spots coming and going in my left eye.

I’m also excited to start treatment soon as I’m almost 80 and I know that people my age are more likely to progress more quickly than younger people. I don’t know if it’s just because of GA or because the aging process causes us to lose more rods and cones.

I want to slow the vision loss as quickly as possible, because it’s not like I have two “good” eyes. And I will be much more disabled if I lose more sight in my right eye. But I’m much more hopeful about my future with GA. I feel this way not only because this new treatment exists, but also because I know that many researchers are studying this disease.

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