By Abdhish Bhavsar, MD, as told to Sonya Collins
I take care of children and adults with all different kinds of retinal diseases, and patients with macular degeneration and geographic atrophy occupy a big part of my patient population.
One of the biggest frustrations my patients bring me in early geographic atrophy that involves central vision is when they start to have difficulty reading. This is especially frustrating for those who are avid readers. Losing the ability to read is very, very discouraging.
But with adjustments, many people who have small areas of geographic atrophy in the macula and the fovea can still read. The problem is that many of them are so discouraged when they hear there’s no cure that sometimes they don’t want to talk about these adjustments they can make.
But it’s really important to center the discussion on what they can do to manage the condition. I let folks know that the best way to manage macular degeneration when there’s atrophy in the middle part of their vision is with magnification, different lighting techniques, and different contrasts.
You can magnify print or increase the font size with a magnifying glass or on a computer screen, reading machine, tablet, or phone – whatever way you choose to increase the size of the print.
The next thing patients can do is to improve the lighting and contrast. Dark print on a white page with better lighting is so critical to helping people read. It’s amazing that just changing a light bulb in a desk lamp can help immensely.
At this point, I tend to involve the state vision rehabilitation services. If your state has one, they ask you what trouble you are having with daily tasks and they help. They will pick out different light bulbs for you, put them in different places, and recommend different magnification devices and other modifications so you can continue to function in many cases.
Another frustration for patients is that these are all extra steps they have to take before they can sit down to read – steps they didn’t have to take before. They can no longer just pick up something and read it. It’s an extra step just to keep track of where you left your hand magnifier. Some patients have come up with solutions for this by keeping magnifiers in every room in the house, in their purse, on their nightstand, next to their chair, and so forth.
Some people are also self-conscious about making these adjustments. They don’t want to read a menu in a restaurant with a magnifier, for example, because they are afraid they’ll be seen differently.
Social Frustrations
That leads to another frustration for people with geographic atrophy, which is social circumstances.
If you’re losing central vision, when you meet friends, you have to look away a little bit to be able to see their faces because the retina outside of the center part works better. So you’d have to turn away just a bit to see them. If your friends don’t know you have loss of central vision, they will think this is strange. They might think you are being rude looking away when they’re talking to you, or they might think something is wrong cognitively.
Many of my patients don’t want to tell people they have macular degeneration, but when it comes to your close friends and family, you should really let them know. That’s what I counsel patients to do.
Patients' Determination
On the other hand, I have many patients who wouldn’t let anything – including macular degeneration with geographic atrophy – stop them. I have learned so much from these patients about resilience and staying positive.
I have a patient who has lost a good amount of vision, and he is a farmer who still farms. Every time he comes in, he is smiling and saying positive things about life and how he keeps going. He tells me what he’s planting and what’s happening on the farm. It’s an inspiration to see him. That took some adjustment, but it’s such an important mindset, and it helps him stay healthy in spite of having macular degeneration.
Another patient is an avid sewer. She is a master sewer. She can sew anything and it looks wonderful. Nothing stops her. She’s like a locomotive. She’s still sewing to this day, but she had to adjust. Using lighting and magnification, and looking a little bit away, she can see the needle and the thread. And she creates exquisite work.
She sews these elaborate designs. She made something for me once – it was a banner with my name embroidered on it so perfectly that you would never have known she had macular degeneration. She has adjusted and overcome this shortcoming. She’s a great example and inspiration for us all.
Family Dynamics Can Be Challenging
Sometimes, it’s patients’ families who bring the challenges. They don’t understand why I continue to treat or monitor their family member. They say, “Why would we bother continuing to treat this eye? She can’t see anything.”
I have to explain to them that just because they can no longer read any letters off the reading chart, they can still navigate a room. They can still get around their house. They can leave my exam room and get themselves down the hall and out of the clinic. So we want to continue to monitor and protect the vision they have because they’re still using it. It is still useful to them. They are resilient and they are making it work for them.
Humor and Inspiration
And that part – going on and staying positive in spite of such great difficulty with daily tasks – I’ve been so impressed by that. I’ve learned so much from my patients who keep smiling and staying positive. My patients make me laugh all the time. They hang on to their sense of humor even when they have serious, dire issues going on with their eyes and other aspects of their health. My patients with macular degeneration and with geographic atrophy may be having a very tough time, but some of them keep going and keep making everyone around them better.
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SOURCE:
Abdhish Bhavsar, MD, Retina Consultants of Minnesota.
