A woman is uncertain listening to different automated voices trying to make a decision.

Facing Uncertainties and Decisions With Macular Degeneration

Last updated: September 2023

They say "timing is everything," but with age-related macular degeneration (AMD), nothing is certain. There are many decisions to make, and it’s difficult to get the timing right.

Wondering about future living arrangements

One decision I ponder regularly is where should I live. Should I sell my big family home and buy something smaller and more accessible? I like living here and I don’t really want to move before I need to.

But I watched as my parents left it too long to downsize, and then the family had to do it for them.

At 90, and with a broken femur, Dad could no longer drive, and Mum was legally blind, so they couldn’t stay in their large home. They’d previously battled through a fire and a flood in this house, but now it was time to leave. The family helped them resettle with love and care, but they could have made their own decisions if they’d started earlier. I don’t want my family to have to make that decision for me.

Decisions about driving and vehicles

Another big question is whether I should buy a new car.

Well, who knows? I need one now, but I have no idea how long I’ll be able to drive for. That is one of the big uncertainties with AMD. Electric cars are probably the way to go at this stage, but they’re very expensive (although I have heard that Teslas can almost drive themselves on autopilot, and that could be helpful).

Utilizing household adaptations

Automating the house has been an easy decision. Having my smart assistant, Alexa, turn my lights on and off and play my music and the news is wonderful. Even if my sight weren’t deteriorating, I’d be glad to have this assistance. She helps with my television, too, but I think I have "too many Alexas." I have an Echo Show, an Echo Dot, and Alexa on my TV and phone. They seem to talk to each other, and sometimes I can’t get a word in! And I never know which one is going to answer me when I ask a question. I need to get them more under control!

Deciding on supplements

Another decision to make is which supplements to take for AMD. I’ve been on the AREDS2 supplements for about 8 years. My previous retinal specialist insisted I stay on these supplements, which have 80 mg of zinc per day. My new specialist seems to think 25 mg of zinc is sufficient, although he won’t clearly articulate this. A decision is needed here!

I asked my oncologist recently about taking turmeric. She said it was fine for me, and started to give me some suggestions about using it in cooking. Now I think there is a possibility that it might not be good for those with gallstones, which includes me. I’ll have to sort that out somehow!

Keeping track of vision changes with an Amsler grid

An uncertainty I face often is whether I have seen a change on my Amsler grid. This is not an exact science, and sometimes the little wiggles and blotches on the grid look different from day to day. Each time I look at it, I think, "Was it like that last time?"

I’ve marked what I can on a spare grid, and I try to make note of significant changes. I went back to the doctor once because I thought I saw a change on the grid. It wasn’t anything serious, but the doctor was glad I went back to see her.

Will my AMD progress?

The greatest uncertainty which underpins all my decisions is whether my dry AMD will advance to geographic atrophy. Or will it advance to the wet form? I don’t know, but I am aware I’m in the high-risk category for both.

No one gets a free ride through life without uncertainties to face and decisions to make. Having macular degeneration just adds that extra degree of difficulty. I hope I’m up to the challenge!

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