By Andrew Eller, MD, as told to Stacey Jones
If I were to use an analogy of the retina as a pair of blue jeans, you might think of the knee as the macula. We know the knees in blue jeans tend to get a little threadbare over time. Blue jeans wear out from use, but the macula does not seem to wear out from use. It's not because we read too many books or saw too many movies. It's just a natural aging process or, should we say, a more rapid aging of the macula.
When the thinning of the macula gets advanced, that is geographic atrophy. The retina is so thin that it looks like there's no vision at all. Over time, there can be one large [thinning] patch or there can be multiple, small patches, but over time they all progress. And the more they progress, the more they take out vision.
Let's say your fovea, or the very center of the macula, is fairly preserved. You could have 20/25, 20/30, 20/20 vision, but you've got a patch on each side. You can look at an eye chart and see. You can watch TV because you're looking straight at something, but you can't read. Reading consists of what we call “scanning vision” across the line of words.
All of a sudden, one word falls into that patch of atrophy and disappears, then picks up again. It might slide into a patch of atrophy on the other side of the center. And that word disappears. It’s very frustrating for people to say, “I can't read anymore.”
New medications, Izervay and Syfovre, reduce the creeping of the geographic atrophy patches by about 20%. Both of these medicines must be injected into the eye every month or so. Basically, forever.
There’s an Entire Team Behind Me
When my patients are starting to lose their functional vision, that is where our low-vision doctors come in. It's a specialty within optometry, and they work with what are called adaptive devices – everything from special glasses that serve as magnifiers, to actual magnifying lenses, to just maybe looking at an iPad or a Kindle with larger print.
Low-vision therapists ask, “What are your needs? What would you like to do?” Then they figure out what device is available that might help you and train you to use it. If you’ve had a stroke, they don't just give you a walker and say, “Go home and good luck.” And we don't just give somebody a magnifier and say that. If your center of vision is poor, you may have to look a little bit to the side where the retina is still intact but doesn't have the sensitivity to see well, and then you magnify that.
With geographic atrophy, if I look at your face, I might see your hair, your ears, and your chin, but the center is grayed out. If I want to really try to see your face, I'm going to look at your right ear or your left ear and use that. We call this “eccentric fixation” (when there’s a part of the macula other than the fovea the eye uses to focus on objects). Then, maybe I’d magnify that to get a better idea of what you look like, but looking straight at you won't work. Well, that takes training.
A low-vision occupational therapist is specially trained to teach patients how to use digital adaptive devices. This is being able to talk to Alexa or Siri and say, “What's the weather? Read my email to me, call this number or play this music.” If you fall, you can say, “Alexa, call 911.”
Social workers make sure a person is safe in their own home because as people age, there are balance disorders to worry about so that people are not falling down their stairs. The social workers go into patients’ homes and help them with cooking and those sorts of things.
For some people with loss of vision, depression may become a huge issue. All of a sudden, you give up your driving, you give up your reading, you can't watch your favorite movies. Since we've had the drug therapies, I don't see the profound loss of vision I used to, but there are still times when I will recommend a referral to a geriatric psychiatrist to help people deal with a slow decline in vision.
We have a whole staff, everybody from the front desk who does registration and our follow-up appointments to the technicians, who interview patients and ask how they're doing, taking their history and checking their vision. Today, we have some really amazing ways to image the retina, to take pictures that give us so much information, that we have a whole department of imaging professionals who do that type of testing.
It's all a wraparound. There are a lot of people involved in a patient’s care.
What Should You Ask Your Doctor?
Everyone comes in wondering, “What is my doctor going to tell me about my vision? I know it's reduced. I know I can't do things as well.” Everybody wants a prognosis. What can they expect? Will they continue to lose more vision, and if so, how fast? When can they expect to give up driving and reading? Frankly, there is no way for us to accurately predict outcomes. I could say in 2 years you're going to give up your driving – and I could be wrong. It could be 10 years before your condition progresses to that point.
My patients just want to know, “Where am I in this course of this thing, and what do you have for me? Is it mild, moderate, severe? What can you do to help me?” You should ask your doctor, “What’s available for me with this condition?” That's the main and best question people can ask.
Then patients will ask, “What can I do for myself?” I tell them whatever is good for your body is good for your eyes. What's good for your body? Sleep, healthy eating, healthy exercise. Those are the biggies. The No. 1 risk factor that we know of that's associated with macular degeneration is smoking. I tell everybody to stop smoking if they can.
As far as restrictions, they are going to be based on what to do to avoid injuring yourself. You probably shouldn't be working with sharp knives and definitely not driving your car. I've had patients come in where the wife will say, “He just sits in his car. He'll start it up. He'll back it out of the garage and then drive back into the garage, but he just sits in his car.” It's a hard thing to give up.
Another thing I tell my patients is that if you try to do something and you get frustrated, don't do it. If you pick up a book and want to read it but can't, don't just sit there and get frustrated. Try books on tape instead.
I feel one of my roles is to help people adapt. I say, “You have a medical condition that is challenging you. You have to rise to the challenge, and you have to keep your mind active. You have to keep your brain active. And if you can't keep it active by using your eyes, we have to find other ways to stimulate your brain.”
Show Sources
Photo Credit: Tom Werner/Getty Images
SOURCES:
Andrew Eller, MD, professor of ophthalmology, University of Pittsburgh Medical Center; director, Retina Service, UPMC Vision Institute.
American Academy of Ophthalmology: “What to Know about Syfovre and Izervay for Geographic Atrophy.”
National Library of Medicine: “Eccentric visual fixation.”
