Losing My Vision: A Race Against Time and Sound

My Journey Through Geographic Atrophy

My life with GA

By Margret Krakauer, as told to Keri Wiginton

Life is like a race, and for me, it’s a race against losing my vision and my hearing. At the age of 79, I had cataract surgery, only to be diagnosed with age-related macular degeneration (AMD) soon after. It was like a thunderbolt from the blue – shocking, terrifying, and utterly bewildering. But I’m not one to back down easily.

Having been legally blind in my left eye since childhood, I knew a thing or two about adapting to vision loss. Perhaps my early struggles with sight prepared me to face the challenges of living with AMD. But facing this diagnosis was no easy feat. Anxiety keeps creeping up on me, reminding me of the possible loss of my vision. However, I’m mentally prepared for the future, armed with the knowledge that even without central vision, people with AMD can still lead fulfilling lives.

I’ve always been a creative soul, previously indulging in painting for hours on end. Now, as my vision deteriorates, painting might become a thing of the past. However, I have hope that I’ll find solace in other forms of art, like sculpting. It feels good to have something to look forward to, something to keep my spirit alive.

Life Through My Eyes

Despite the challenges, I’ve managed to navigate daily life with determination and a sense of humor. Cooking on my own is not a problem, although deciphering menus can be a tricky task. Thankfully, the computer allows me to enlarge to-go menus, or I can rely on my husband to read them aloud. Teamwork makes the dream work, right?

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Reading is still a joy, albeit requiring good lighting and the aid of my regular glasses. Recently, I’ve embarked on a 10-week lifelong learning course, diving into the fascinating world of non-fiction and fiction mysteries. While I enjoy e-books, I can also still read print articles, as long as I have an ample supply of light.

Navigating low-light situations, whether indoors or outdoors, is no walk in the park. To combat this, we’ve brightened up our house in all the areas where I spend most of my time. However, when the sun bids adieu, so does my ability to drive. It’s not just about the darkness, but also the blinding glare from other light sources that poses a challenge.

Color perception has started playing tricks on me too. Certain colors, especially pale yellow, appear white in my eyes. Sometimes, letters vanish from the right side of my field of vision while reading or watching TV, reminding me of the holes in my vision. However, with a blink or a slight shift of my head, they can magically reappear. It’s like a game of hide-and-seek, but with alphabets.

When I look at the Amsler grid, an eye chart I use to monitor changes in my vision caused by AMD, wavy lines greet my eyes. It’s a mesmerizing sight, like a surrealist painting come to life.

Finding Support in Unexpected Places

In this journey, the love and support of my husband have been nothing short of extraordinary. He’s always there when I need a helping hand, willing to go the extra mile. Cleaning my hearing aids, threading needles, pointing out potential hazards during walks, or providing much-needed illumination with our trusty flashlight – he’s my hero.

My doctor may not be much of a talker, but I don’t mind. Whenever I have questions about GA or low-vision services, I feel comfortable reaching out to him. And when the need for connection arises, I turn to my Facebook community, Our Macular Degeneration Journey. The kindness and knowledge shared among members, including low-vision specialists, create a supportive environment that feels like a lifeline.

It was through this community that I first heard about the breakthroughs in GA treatment. The news filled me with a mix of hope and excitement. Although I know my vision loss cannot be reversed, the possibility of a new treatment has reignited my zest for life and the possibility of maintaining good eyesight for the rest of my healthy years.

Hope for the Future

My retina specialist believes I’m an ideal candidate for the new drug, pegcetacoplan (Syfovre) injection, approved to treat GA. I’m eagerly awaiting my turn for these shots because blind spots in my left eye have been appearing more frequently. Time is of the essence, as I accelerate towards slowing down the progression of vision loss.

As an octogenarian, I’m aware that the aging process may amplify the challenges posed by GA. Slowing down this deterioration has become my primary goal, especially since losing more sight in my right eye would significantly impact my independence. This new treatment is not just a glimmer of hope; it represents the dedication of many researchers studying this disease. Their tireless efforts fuel my optimism for a brighter future.

Life is full of races, but with determination and support, we can overcome the hurdles in our way. Will I end up with a podium finish in this race against time? Only time will tell. But for now, I’ll keep running, embracing each day with a smile, and never losing sight of the fact that there’s always hope on the horizon.

Are you facing similar challenges or know someone who is? Share your thoughts and experiences in the comments below. Let’s continue supporting and inspiring each other on our unique journeys with vision loss.