I Wish I Knew Then What I Know Now

Over the last couple of years, I’ve learned so much from our online community at MacularDegeneration.net. The shared stories have been a never-ending source of inspiration and information. The Facebook posts have provided support that can’t be gained from fact sheets alone.

What I wish I knew

I’m very grateful for what I have learned, but I wish I had found this community sooner.

My mother had the dry form of age-related macular degeneration (AMD) and my father had the wet form. I’ve been supporting my parents with their AMD journeys for decades. There are so many things I know now, from this group, that I wish I had learned earlier. I could have helped them more.

Supporting my mother

My Mother’s dry macular degeneration started before the advent of the world wide web, so we relied on what the doctor told us and any publications we could buy. We had never heard of macular degeneration.

Bad doctor

Her very first specialist told her she had come to him too late. He said he could have treated her if she came sooner. He made her feel it was all her own fault. This was very distressing for her.

I could have told her, if I had known then, that there isn’t a treatment for dry macular degeneration, and it wasn’t her fault. She’d never smoked or been overweight, so she hadn’t contributed to it in any way.

Lifestyle changes

If I knew then, what I know now, I could have encouraged her to take the AREDs supplements. I think they were talked about by a later doctor, but nothing was explained.

If I had been in this group then, I would have known to speak to her about trying to eat a Mediterranean-type diet. I don’t think her eye specialist ever mentioned diet.

From this group, I’ve learned more about the emotional struggles that people experience with AMD. I could have provided more empathetic support to my Mum. She never complained, not once, even though she was legally blind.

I came across MacularDegeneration.net when googling Charles Bonnet Syndrome, which my mother eventually developed. I certainly wish I’d made that discovery even sooner. But that’s another story!

Supporting my father

My Dad dutifully went off to his injections and never really talked about what happened when he was having the procedure. In the beginning he drove himself. Then I drove him or he took a community bus.

Preparing and recovering from injections

Later, nurses from his residential care home took him. Now, through this group, I have an idea of what he experienced. If I had known earlier, I could have helped him prepare for these shots and cope with any anxiety.

In this group I’ve learned that you can ask for extra numbing, or extra rinsing, if the shots cause discomfort. I could have told him this.

Uncertainty

We might not have phoned for an emergency wheelchair taxi to take him back to the specialist’s surgery when his eye turned red. We might have just phoned the doctor first. I might have been able to ask his doctor about using cold compresses or sterile drops after the injection to ease the discomfort.

When his shots paused for over a year, I thought that was good. Now I know that perhaps they had stopped working. Now I realize that I should have asked what was happening. Perhaps he could have changed anti-VEGF medications.

Looking back, moving forward

For the last 6 years of their lives, my parents lived in residential care, a two-days’ drive each way from me. As I gradually came to gather more knowledge from this Community, my access to Mum and Dad also decreased with the advent of COVID-19. It became more difficult to impart to them what I was learning about macular degeneration.

I just wish I had known then, all those years ago, what I know now. Perhaps I could have eased their burden just a little more. Thank you to everyone who has shared their stories along the way and helped us all.

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).