Community Interviews: Living With Age-Related Macular Degeneration

As the MacularDegeneration.net community grows, we want to learn and share more about your experiences. We conducted a series of interviews with community members living with age-related macular degeneration (AMD). Read their stories below.

Meet Vivian

Diagnosis journey

As a nursing home nurse, I was very well versed in the symptoms [of macular degeneration] and asked to be evaluated, so it was not a surprise. But the retinologist found other disease processes that had to be rectified.

I had had a GI hemorrhage that caused me to become severely anemic, which caused my vitreous humor to become very sticky. This caused many retinal tears and macular holes in both eyes. Therefore, the macular degeneration took a back seat for a very long time. By the time we started dealing with it, I had already started having wavy lines and seeing double. I gave up my keys. My doctor and his staff were very supportive, and (before COVID) dispensed many hugs. He sent me to the local Lighthouse for the Blind even though I am not legally blind. They have been a haven of education.

How has macular degeneration changed your day-to-day habits and activities?

I can no longer read, sew, do crafts, or clean house. But… I have binoculars that allow me to see the birds at my feeder right outside my window. I hear much better. Sitting on my patio, I hear birds, coyotes, dogs, and much more. The wind in the trees and the rain.

I am lucky to have family nearby who take me where I want to go when my husband is busy. My niece takes me on weekly excursions because I want to see what I still see while I can. I have audiobooks. I have visual AI on my phone that reads labels and signs for me when I shop. I have 10X magnifying glasses to see better up close. My phone and computer have VoiceOver to send and receive messages. I am blessed.

What is 1 piece of advice you would give your younger self if you knew you were facing a macular degeneration diagnosis?

Advice to my younger me? Create many memories. Share those memories with anyone who will listen. Write them down. Buy that movie camera and use it. Eat healthy.

Get your eyes checked often. Be your own advocate! If you feel symptoms, tell any doctor you visit until someone takes you seriously. It took me several doctors to get one to do testing.

Meet Linda

Diagnosis journey

First diagnosed with dry MD about 13 years ago. Wet MD in my left eye in April 2019. As both parents had it, the diagnosis did not come as a complete shock. I know the very day mine became wet and was able to get my first injection 3 days later.

How has macular degeneration changed your day-to-day habits and activities?

Because I caught mine early before any loss of central vision, my activities have not changed.

What is 1 piece of advice you would give your younger self if you knew you were facing a macular degeneration diagnosis?

Never pick up a cigarette.

Advice for others with AMD

Maintaining healthy habits and regular vision checks are not habits only recommended by retinal specialists and optometrists, but also by those living with AMD. Read some of Vivian and Linda’s advice for others experiencing macular degeneration:

• My advice is to stay healthy and continue to go get checkups even if you think everything is OK. The doctor can see how the disease is progressing even if you do not have any new changes.
• Once you are diagnosed with dry MD, make sure you check your sight often using the Amsler Grid.

Your diagnosis journey

Would you like to share your macular degeneration story with the community? Do you want to compare your symptoms with others? Are you hoping to learn more about adapting and accessibility tools? Share your story or ask questions in our forums section to connect with others living with AMD.