By Margret Krakauer, as told to Keri Wiginton
I’ve recently switched hobbies from painting to writing. One of the first things I wrote for my memoir was: It’s a race between losing my vision and my hearing.
I’m 79 and had cataract surgery a decade ago. That’s when my doctor diagnosed me with age-related macular degeneration (AMD). I started to show signs of geographic atrophy (GA) probably 5 years later.
I’ve been legally blind in my left eye since childhood, which has nothing to do with GA. But I learned to adapt to vision loss early on. I always wonder if my early sight struggles helped me adapt to living with AMD.
But I think I reacted to my diagnosis like anyone else: I was shocked. I was scared. I didn’t understand it.
I still get anxious about vision loss, but I’m doing well. I feel mentally prepared for the future, one that until recently didn’t include GA treatment. And maybe something will come along in my lifetime that’ll be even better than this newly approved drug or the ones that may soon follow.
Plus, people who lose central vision in both eyes can still travel, work, bicycle, and maintain independent lives. Just knowing that other folks with GA do all those things is reassuring.
And who knows what’ll happen for me in the years to come. I might not go back to painting, which I used to do for hours, but maybe I’ll return to sculpting. It just feels good to be able to have that to think about.
Life Through My Eyes
I have no problems cooking on my own. Menus can be tricky, though I haven’t eaten in a restaurant at night since before the pandemic. But I can enlarge to-go 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 about non-fiction and fiction mysteries in a 10-week lifelong learning course. I found all the books but one electronically.
And while I prefer e-books, I can still read print articles. I’ll just need a lot of light.
I find it hard to see in any low-light situation, inside or outside. We’ve started brightening up the house, especially in the areas where I spend a lot of time. But I don’t drive after the sun goes down. That’s because it’s dark but also because of how glare from other light sources hits my eyes.
I’ve slowly started losing my ability to discern between certain colors. For instance, not all yellows are a problem. But pale yellow looks white to me.
Sometimes letters disappear on the right side of my field of vision if I’m reading or watching TV. I guess that’s because I have more damage in that part of my macula. Sometimes, if I blink or move my head, letters will reappear. But that’s a little disconcerting to know I have holes in my vision.
And when I look at the Amsler grid — an eye chart I use at home to test vision changes caused by AMD — I can see wavy lines.
Many people with wet or dry AMD talk about seeing dark blobs. 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 a lot faster than they used to. Some days I can’t read at night, so instead, I watch some dumb thing on TV. And that’s fine.
Where I Find Support
I’ve been married for 53 years, and my husband helps me in all sorts of ways.
For example, I wear hearing aids. He’ll clean them or change the filters for me because I can’t see fine details enough to do it without a magnifier. Maybe that’s lazy of me, but he doesn’t complain.
He’ll thread needles for 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 isn’t a good gauge of how I see everyday life with AMD or GA.
When we walk outside, my husband will point out steps, stones, or other things I might not notice. And he always holds onto me in the dark.
We also have this unusual flashlight that we use. It has several lightbulbs that shine 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 about GA or any low-vision services I might need. Though he’s not one for chitchat. And I’m OK with that 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 kind as can be. And I’ve learned all sorts of things about the world of GA in discussions with other members, which includes low-vision specialists like optometrists or occupational therapists.
Facebook is where I first heard that new drugs were coming down the line. And like other people in the GA community, that news felt monumental. I know there’s no way to reverse my vision loss, but knowing there’s a new treatment out there has given me a new lease on life.
I’m not saying I ever gave up on living well with low vision. But I did give in to the idea that my sight would only worsen. Maybe now there’s a good chance I’ll have good eyesight for the rest of my healthy life.
Hope for the Future
My retina specialist thinks I’m a good candidate for pegcetacoplan (Syfovre) injection, the new drug approved to treat GA. I’m eager to start getting the shots quickly because I’ve noticed more blind spots that come and go in my left eye.
I’m also excited to start treatment soon because I’m almost 80, and I know people my age are more likely to progress faster than younger folks. I don’t know if that’s just because of GA or because the aging process causes us to lose more rods and cones.
I want to slow vision loss as fast as possible because it’s not like I have two “good” eyes. And I’ll be much more handicapped 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 because I know many researchers are studying this disease.
Photo Credit: fstop123 / Getty Images
Margret Krakauer, 79, age-related macular degeneration advocate, Wayland, MA.