By Margret Krakauer, 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 my sight and my hearing.
I am 79 years old and had cataract surgery 10 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 the loss of vision. I still wonder if my early vision problems helped me adapt to 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 anxious about the vision loss, but I’m fine. I feel mentally prepared for the future, which until recently did not include GA treatment. And maybe something will happen in 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 AI are doing all of these things is reassuring.
And who knows what will happen to me in the years to come. I may not go back to painting, which I did for hours, but maybe I will go back to sculpting. It’s good to be able to think about it.
life through my eyes
I have no problem cooking myself. Menus can be tricky, although I haven’t eaten in a restaurant in the evening since before the pandemic. But I can enlarge the take-out menus on the computer or ask my husband to tell me the choices.
I can read most things with my usual glasses. I learn the mysteries of non-fiction and fiction in a 10 week continuous learning course. I found all but one of the books electronically.
And even though I prefer e-books, I can still read print articles. I just need a lot of light.
I have trouble seeing in any low light situation, indoors or outdoors. We have started to brighten 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 how reflections from other light sources hit my eyes.
I slowly started to lose my ability to discern certain colors. For example, not all yolks are a problem. But pale yellow looks white to me.
Sometimes letters disappear from the right side of my field of vision if I am reading or watching 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 seeing dark spots. I see something similar if I’m in a room and the TV is on but the overhead lights are off. I will see a cloud of electrical noise or tiny dots that move a bit.
But like everyone else, I have good days and bad days. And my eyes get tired much faster than before. Some days I can’t read at night, so instead I watch stupid stuff on TV. And it’s good.
Where can I 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 that without a magnifying glass. It may be lazy of me, but he’s not complaining.
He’s going to thread needles on me because even though my acuity is 20/30, which is pretty good, the little things are hard to see. The eye chart they use at the doctor’s office is not a good indicator of how I see everyday life with AMD or AG.
When we walk outside, my husband points to steps, stones or other things that I might not notice. And it 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 grab it 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. Although he’s not one to gossip. And I’m okay with that because I can go home and connect with people through my Facebook community.
I’m part of a group called Our Macular Degeneration Journey. People are nice as can be. And I learned all kinds of things about the world of GA by talking to other members, including low vision specialists like optometrists or occupational therapists.
It was on Facebook that I first heard that new drugs were coming. And like others in the GA community, this news seemed monumental. I know there is no way to reverse my vision loss, but knowing that there is a new treatment has given me new life.
I’m not saying I ever gave up living well with low vision. But I gave in to the idea that my eyesight would only get worse. Maybe now there is a good chance that I will have good eyesight for the rest of my healthy life.
Hope for the future
My retina specialist thinks I’m a good candidate for the injection of pegcetacoplan (Syfovre), the new drug approved to treat knee OA. I can’t wait to start taking the photos soon because I’ve noticed more blind spots going back and forth in my left eye.
I am also excited to start treatment soon as I am almost 80 and know that people my age are more likely to progress faster than younger people. I don’t know if it’s just because of GA or because the aging process causes us to shed more rods and cones.
I want to slow the vision loss as fast as possible because it’s not like I have two “good” eyes. And I will be much more disabled if I lose sight in my right eye more. But I’m much more optimistic about my future with GA. I feel this way not only because this new treatment exists, but because I know that many researchers are studying this disease.