By Judith Goldstein, OD, told to Keri Wiginton
Geographic atrophy (GA) can be visually confusing.
People often tell me that one minute they see something, and the next minute they don’t. For example, the word you read may be “she”, but you only see the “he” part. Or $129 may look like $12 and then $129 when you look back.
This leaves people wondering: Well, then, what’s the price?
In later stages of the disease, your central vision may appear to “whiten” or turn gray when looking directly at things or people.
It’s easy to get scared or upset when the visual information you receive comes and goes or isn’t clear. And for some, these sight problems can lead to feelings of depression or anxiety.
But what I see most often is that people with GA are really frustrated – everything takes longer; everything is slower. And sometimes they may need to rely on other people for day-to-day tasks, like paying bills or driving to the store. I find it’s this loss of independence that bothers people the most.
As an optometrist specializing in low vision, I help people manage the individual mental, emotional and physical impacts of their disease. What I emphasize to people is that no matter how much vision loss they have, there are ways to cope. It’s just a matter of finding the right solution for you.
The confusion that can come with geographic atrophy
I often explain to people that their lived experience may not match what they hear from their retina specialist. For example, your visual acuity according to the eye chart may seem very good, but you still read very slowly or have trouble spotting uneven pavement when walking down the street.
To get to the source of this disconnect, it is important to understand how this disease affects vision.
GA causes progressive and irreversible loss of cells in the macula/central vision and can lead to loss of vision. It’s the light-sensitive part of your eye that sees and transmits detail and color when you look straight into your eyes.
But the disease can also cause a “doughnut” of damage around the macula in the early stages. And you lose pockets of your visual field around the center. This can make simple tasks like shopping or reading labels more difficult. You may have to go back and re-read a lot, and numbers are often harder to read than words.
This happens because we don’t read one character at a time. We see a whole visual expanse. For example, you can read three characters to the left and maybe seven characters to the right whenever the center of your eye looks directly at a letter or number in a sentence.
Sometimes this leads to the frustration of family members. People will say they don’t understand how their mother can see a tiny wire on the floor, but she can’t read anything. And I try to explain to them that when she drops something on the floor, she sees it through the side of her eye. But if she looked at him directly, he would seem to disappear.
People with knee OA also have issues with contrast sensitivity, which is rarely measured outside of a low vision assessment, but contrast sensitivity is important when it comes to people’s faces. My skin can appear the same color as my lips, for example.
Tips for avoiding social isolation
A loss of central vision can affect socialization in several important ways. For starters, you may not be able to drive to parties or events, especially if they are at night. And when you go out, you might not be able to spot the friendly faces across the room.
Now imagine that you are older and making the transition to community living. You may be worried that people will think you’re snubbing them if you don’t say hello or show up again because you’re not sure if you’ve met before. You might be too shy to go out and meet new people or try new things.
But there are ways to improve your social life and well-being while living with SA.
Some essential things you can do are:
Go to rehab for low vision. As low vision specialists, we do not improve your vision. Instead, we tackle all kinds of activities and teach you how to adapt to them with low vision. Some of these modifications may take time to learn, but they can make everyday life with GA much easier.
Get your best corrective glasses. It may sound simple, but it’s actually not. Because it may seem like you should wear stronger reading glasses as your vision deteriorates. But it can amplify the good and bad sides of your vision. As your GA progresses, lower magnification may help you see better up close.
Control lighting. Consider wearing a wide-brimmed hat or a pair of custom tinted glasses to a party or event. You can see better if you control how light hits your eyes.
Ask your friends and family to support you. If you’re going to the grocery store or a social event, ask the person you’re with to let you know who’s coming your way. Ask your partner to say, “Hey, that’s Sally coming down the aisle,” for example.
Call a car. GA can make autonomous driving dangerous. But the good news is that there are plenty of ridesharing services and apps you can use with your smartphone, and some are aimed at seniors. There may also be community transportation options available if you ask your doctor or check with your local health department.
Find new ways to socialize. We will put people in touch with activities organized by local seniors’ or community centres, or in some cases we can put them in touch with volunteer groups who could come and read to them or organize other activities.
Connect online. The beauty of technology is that almost everyone I deal with has a smartphone. And many people play online games like Words with Friends. Maybe their playmate isn’t right in front of them, but they’re still spending time socializing.
Find the right solutions
If you have GA there are many ways to improve your ability to see and do things, but it is essential that you understand what is possible and what is not.
For example, you can use specialized devices to maintain your stamp collection or view paintings in a museum. And many people with GA get back to reading when they switch from printed material to tablet computers.
But you might have to let go of the idea that you can always drive cross-country at night in the dark while it’s raining.
Often, the key to well-being for seniors isn’t taking up new hobbies or socializing. It’s little things like keeping control over their administration. For some, that might mean setting you up with a tablet for online banking or helping you find new ways to manage your medications.
If you have GA, the most important thing is to think about what you actually enjoy doing and how you want to stay connected. There are low vision modifications you can do for just about anything. Even if it’s difficult, we can usually make it work if it’s something important to you.
How to spot depression in your loved one
Many people living with vision loss tell me they have their ups and downs, but overall they are doing well. When the balance is tilted towards more bad days than good days and there are other symptoms of depression (like sleeping too much or eating much less), this can be cause for concern.
The median age of the people I treat is around 77, and I don’t find that GA triggers depression in most people, but it may be enough of a driver if you add it to the physical losses that accompany age.
Although we have to be careful not to label certain behaviors as depression in older people.
For example, your loved one may not get out as much as they did when they were younger. But it may not be a sign that something is wrong. Many people in their 70s, 80s and 90s can be very happy spending time at home.
What’s important is to take a look at your loved one’s baseline. What was this person like before they started having vision problems?
Really talk to your loved one who has GA. Whether it’s your spouse, friend, or family member, it’s important to check in and have those conversations about mental and emotional health.