My Journey With Macular Degeneration

I half-expected (well, three-quarters expected if there is such a thing) to eventually develop macular degeneration (AMD). My mother had the dry form and my father had the wet form.

Mum developed hers relatively early in life, and Dad developed his quite late. It was anybody’s guess what was going to happen to me.

Being diligent

When I needed reading glasses in my fifties, I went to an optometrist. She did a full check, including an OCT (optical coherence tomography). There were no signs of macular degeneration.

I saw her every year until I got the dreaded news about 5 years later. She said I had developed dry AMD in my right eye. She showed me the OCT scan and assured me there was no treatment.

A retinal specialist was not needed, according to her. I knew there was no treatment from my experience with my mother, so I stayed with the optometrist.

A scary appointment

A few years down the track, at what I thought would be an ordinary appointment, I got another shock. After looking at the OCT of the right eye, the optometrist said, “Your sight remains about the same in that eye.”

Then, before she looked at the scan of the “good” left eye, she said, “Now, the worst that could happen would be if we find it in the other eye too.” And, yes, you guessed it, we did find it in the other eye! I was quite shocked feeling that the worst had happened, when in fact, things could actually have been a lot worse.

I wasn’t very happy with her approach. She really should have kept her thoughts to herself at that distressing moment and dealt with the facts. That was my last appointment with the optometrist. It was time for a retinal specialist.

A doctor with a better approach

The retinal specialist was quite serious after she’d looked at my OCTs. But she also managed to be gentle and empathetic. She explained that I was in the early stages of dry AMD in both eyes. As she listened to me describe my family history, we both knew this didn’t bode well. But nothing is certain with this disease.

Doctor's recommendation

She explained about trying to eat a Mediterranean diet which included lots of fruits, green leafy vegetables and fish. She also wanted me to take the AREDs2 supplements, even though I was in the early stages. I could tell she thought I was high-risk for progression. A new Amsler Grid was given to me and I was instructed to contact her immediately if I saw any changes.

Coming out from that appointment I was worried. It was really sinking in now. The progression to 2 eyes frightened me. I had seen what had happened with my parents. I knew their many struggles and the support they eventually needed.

Coping with AMD progression

Was that in store for me? Their courage and optimism had kept them going. Could I find those qualities in myself?

Then I started to realize that because I had helped my parents adapt to their challenges, I knew a few things about coping with low vision. We learnt by trial and error with them, but I had some prior knowledge now.

Technology also bolsters my hopes of coping. My parents would have loved to have Siri or Alexa to help them, but you need learn to use these before you lose your sight. Not easy to do for people who grew to adulthood before the digital era.

Courage

So, I’m hoping I've inherited some courage along with my macular degeneration. This community also continues to give me great inspiration.

I’ve shelved my worry and fright for now, and I’ll try to keep them up there on the shelf and out of my daily life. I don’t want to spoil the days I have now by worrying about what might happen in the future.

Editor's Note: As of August 2023, 2 drugs known as complement inhibitors — Syfovre® and Izervay™ — have been approved by the US Food and Drug Administration (FDA) to treat the advanced stage of dry age-related macular degeneration, or geographic atrophy (GA).