Adapting to Macular Degeneration Progression

Editor's Note: This article was originally written by Brown Eyed Girl, a MacularDegeneration.net Community Health Leader.

Over the 12 years I’ve had macular degeneration, I’ve progressed through many stages. I’ve gone from early to intermediate and now the beginnings of geographic atrophy. One of my eyes has developed the wet form.

I’ve made quite a few adaptations during this time, and recently I looked back at the things I’ve changed.

Adapting to vision loss with light and color contrast

In the morning, if it’s still dark, I have to put on most of the lights in the house. Without these, I cannot see what I’m doing. Even though it’s early morning, the place is lit up like a lighthouse. Low light is my enemy, but I miss the dreamy atmosphere of dawn with just a warm lamp on.

When I make my coffee now, I pour it into a white mug. With the dark coffee and a dark mug, I’ve spilled a few cups. The white mug is easier to pour into and to drink from. I can see how full it is. It’s also easier to see the white mug on my black bench tops.

Mitigating glare

Just as lack of light is my enemy, so is glare. I’ve had shutters put on the inside of most of my windows.

Previously, I had curtains, and they were either open or closed. I didn’t have enough flexibility to control the glare. If I closed the curtains, it was too dull.

The shutters have many more positions, and I can adjust them to what is most suitable at any time on any given day.

Embracing advances in technology

Then it’s on to the daily news. I now ask Alexa, my smart speaker, to read me the news, rather than looking at it on my laptop. Then I ask her to play my favorite music. If I’m cooking something for breakfast and need a timer, I also set it on Alexa. I can’t see the timer on my stove now, so she’s a great help. If I have an early appointment in the morning, I ask her to wake me at a certain time. This is so much easier than setting the alarm on my phone.

Getting clothes out of my closet is another difficulty. Even with the bedroom light on, I can’t see very well into the closet. I purchased some rechargeable sensor lights that come on when they sense the movement of my hands. Now I can see what I’m doing!

A new addition to my home has been a large-screen digital clock device that shows the day, date, time, and whether it’s morning, afternoon, or evening. It’s actually a clock to help people with dementia, but I find its contrasting colors and large print easier to read than other electronic devices I have.

A safer approach to stairs

Going up and down stairs is another behavior I have adapted. I will not go down or up a staircase at home or elsewhere without holding on to the railing. If I want to carry 2 things downstairs, I make 2 trips (pardon the pun!).

Previously, I would carry something in each hand and hope for the best. No more! A few close calls have got me out of that habit.

If I find stairs out in the community which I consider to be not properly marked, I always tell the management. I’ve come across black stairs with no edgings at all, and they look like one big black blob to me. Very dangerous.

Trading grocery shopping for curbside pickup

Labels in the supermarket have always been a problem. I have tried taking a photo of the label and enlarging it, and that works, but it is a slow process.

I’m doing "click and collect" now, where I can place the order on my laptop, drive to the shops the next day, and have it put directly in my car. This is a bit cheaper than home delivery.

Adjusting to nighttime and darkness

I don’t accept invitations to go out in the evening now unless I can be home before dark. This allows an early dinner out in the summer, but in winter it is a no-no.

I’ve been caught out in the dark before, and it rained as well, and it was very scary. I couldn’t see the dividing lines for the lanes, and the glare was very troubling. It's completely legal for me to drive, but I won’t let that happen again.

In the evening, all the lights in the main rooms are still on as I get into bed. I wait until I’m safely in bed and then I tell Alexa, "Goodnight." She turns all the lights off.

I'm managing my progression well

These adaptations have been made gradually — as I found I needed them — or as I discovered them. There will surely be more to come, but for now, I’m managing well, even with the progression of my macular degeneration.