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A Day in My Life With Dry AMD

It’s been about 10 years since I was diagnosed with dry age-related macular degeneration. I’ve moved to the intermediate stage now. I suspect I’m tapping on the door of the geographic atrophy stage.

There have been many small changes in my day-to-day life, but I still do most of the things I want and need to.

More careful than I was before

Each morning I walk up the street for coffee at a café and to do some shopping. I walk much more carefully these days and look down more often than I used to. I step off the curb with caution, and I look more carefully for oncoming traffic than ever before. Those gray cars seem to blend in with the road, and I’ve nearly missed seeing a gray-colored car a couple of times.

Some of this is due to my sight not being as good as it used to be. Some is due to the dark sunglasses I wear to protect my eyes. And some is just due to age and needing to be more careful as I get older.

Deciding when and how far I can drive

During the day, I can still drive, but I avoid driving after dark. In the summer this is fine, because it’s light until about 8:30 PM. That’s enough time to have an early meal out. I can still drive long distances to see my family (a 2-day drive) because it’s an easy 2-lane divided highway for much of the way.

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After that, it’s a country road, and I have to look out for kangaroos and emus. I avoid the times when they are likely to be out, and I avoid leaving too early and catching the sunrise glare. I can’t drive into the sunrise or the sunset, so this is why the drive has now become 2 days.

Changes to errands, entertainment, and hobbies

Doing my own shopping hasn’t changed, but I sometimes use my magnifier on my phone to read small labels. Or I take a photo of the label and enlarge the photo to read it carefully. I’ve set myself up with online shopping, and I've used it quite a few times to become familiar with it. Once again, part of this is just the aging process, because too many groceries become too heavy to carry.

Going to the movies is something I love doing. I have tested their audio transcription headphones and listened to the movie described as I watch it. That’s a good service for anyone who needs it.

Luckily I can still use my phone and my laptop, although I keep increasing the font size and adjusting the brightness. Sometimes there are blank spots in what I read, but I work around that.

My big-screen television is my favorite device. I have noticed now that there are a few gaps and wiggles in the closed captions. They look OK with both eyes, but if I close 1 eye, I can only just read them. Watching the Australian Open tennis matches on television recently, I was quite shocked to see how bent and wobbly the sidelines had become!

Increasing awareness about public accessibility

Raising awareness of macular degeneration is important for me. I am very keen on the idea that it should be easier for people with low vision to get out and about and enjoy themselves.

This applies particularly to hospitality venues such as cafés, restaurants, and theatres. I often speak to venues about the tiny size of the font on their menus and the lack of contrast of the print. Tiny signs for the ladies' or men's rooms also come onto my radar. Many signs are so small that someone with macular degeneration can’t make them out from a distance in a big venue. They should be legible from the other side of the room.

Steps going into and out of premises are also on my hit list. A recent restaurant I visited had black steps leading up to an eating area without any colored safety strips on the edge of the steps. It was almost impossible to tell where 1 step ended and another began. My friend said the same, so it wasn’t just me.

I’m also advocating for our local bus to "stop on demand" when it’s safe, because it’s a long distance between the designated stops. That’s still a work in progress.

People with macular degeneration deserve to enjoy life

If people show an interest, I tell them about my macular degeneration. All of my friends know, but we don’t dwell on it. Few people seem to know anything about macular degeneration unless they have had it in the family. Unfortunately, many of my friends do have it in their family.

I wish people understood the real vision difficulties people with advanced macular degeneration face. When central vision is lost, peripheral vision is often retained. People with macular degeneration might make a comment about something they can see, and others assume, incorrectly, that there is not much wrong with that person’s sight.

Daily life could be made a little bit easier with some of these changes. People with macular degeneration deserve to be able to get out and about and enjoy themselves without unnecessary hindrances.

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