A Decade on This Macular Degeneration Journey: What’s Changed?
Living with macular degeneration, I’m usually looking forward, trying to prepare for what might come in the future. Just recently I’ve realised that it’s been almost a decade since I discovered I had age-related macular degeneration (AMD).
I’ve decided to look back at this point and take stock of what’s changed in those 10 years.
My vision has changed over time
The most obvious change is in my sight. Up until recently, I’ve had little problem. Now I see wiggly lines on things like doorframes and windows inside and telegraph poles outside. Luckily, my better eye sometimes takes over, and things sometimes seem normal when I look with both eyes.
It’s harder to distinguish colors now. My television remote says push the green button to do something and push the blue button to do something else. Oh, dear! Which one is which? I’m not quite sure! I often end up somewhere I didn’t want to go.
Changes in technology, transportation, and entertainment
Driving at night is not something I do anymore. I wouldn’t consider driving after dark except very locally. I got caught in a traffic jam once on a freeway and ended up driving in the dark and through a storm. I had passengers, too. That was very scary, although they complimented me when we got home safely. I think they were just mightily relieved to arrive in one piece.
Increasingly, over these 10 years, technology has played a larger part in my life. Being able to ask Alexa to turn on the lights in my house and play my music is a real bonus. I can’t see well enough to tune into radio stations anymore, so this help is wonderful.
Bigger is often better with macular degeneration, and I’m loving my new large-screen television and the bigger phone that I recently purchased. I’ve enlarged and contrasted my fonts everywhere, and it really helps. Not wanting to go completely digital, I’ve started reading large-print books. I’m amazed at how much easier they are to read, although I still need very good light to do this.
New treatments and specialist care for dry AMD
Another change in the last decade has been in my medical professionals. I went from an optometrist to a general eye specialist and now see a retina specialist. I went searching for the most highly-regarded doctor in the field of macular degeneration in my city, and I think I have found him.
The recent release of new treatments for the late form of dry AMD is a big advance. This was unheard of 10 years ago. I hope they continue to refine it and work on other forms of treatment as well.
Managing other eye conditions
Additional medical issues with my eyes have occurred over the last few years. I developed cataracts and will need to have them removed in the future. My new RS says there is no immediate need, but they are growing.
Chronic dry eyes have also worried me. I need to use lubricating drops regularly to avoid blurry vision. I don’t want to worry that this blurry vision is due to a change in my macular degeneration.
I take my eye supplements "religiously" now. In the beginning, I skipped a dose here and there. If I was travelling, they often went by the wayside. Now, I rarely miss a dose, although I do worry about the amount of zinc I have taken over the decade. I’ve started taking saffron supplements, too. My RS said that would not do any harm and could possibly help.
Taking inspiration from others coping with AMD
Over this period, I lost both of my parents — in the last 2 years, actually. Each of them had macular degeneration – my mother with the dry form and my father with the wet form. They taught me a lot about how to cope with AMD, and they will inspire me for the rest of my life.
One of the most important steps I’ve taken in recent years has been becoming involved with this community. Writing and moderating for this group has taught me so much. Hearing how other people cope helps me to believe that I, too, will be able to cope when the time comes.
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 geographic atrophy (GA).
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