Ask the Advocates: Treatment, Management, and Lifestyle Changes With Macular Degeneration
Everyone's different, we all know that. Still, knowing what's out there can help us better understand our options when it comes to managing or treating macular degeneration (MD).
For those with myopic or dry macular degeneration, treatment includes taking supplements to help support eye health. Anti-VEGF drugs may be used to treat some forms of myopic macular degeneration and age-related wet macular degeneration. To learn more about our community's experiences with managing macular degeneration, we asked our advocates:
What's your treatment and management plan? If a treatment does not exist for your MD, what specialists do you work with to help monitor your condition and adjust to a low vision lifestyle? How often do you visit a specialist?
Managing macular degeneration
"My treatment and management plan is pretty simple because there really isn't much that can be done for a person with myopic macular degeneration. Unlike wet AMD, I don't have the option of injections. So, I see my retina specialist once a year, and my optometrist once a year. If I have a change in vision, I see them both as needed.
Besides that, I am passionate about living a healthy lifestyle in order to give my eyes their best chance at being healthy as well. I eat for my eyes (lots of fruits, veggies, and protein - with minimal sugar). I also exercise, try to get a good night's sleep every night, and take care of my mental health. I research a lot and try to keep up with the latest breakthroughs with myopia and macular degeneration. I also made sure to research what specific vitamins I needed (and didn't need) in order to give my eyes the nutrients they require."
"I like to think I have assembled an 'eye team.' It’s comprised of my optometrist, my retinal specialist, and a low vision rehab OD that I have seen. I get an injection of anti-VEGF in my wet AMD eye every 4 to 6 weeks. Also I am well-looked-after by other medical professionals and I check my own status often with the Amsler grid." (Richard was diagnosed with geographic atrophy in one eye and wet AMD in the other.)
"I have dry AMD and see my retinal specialist twice a year. He performs an OCT scan to monitor for progression. My treatment consists of taking AREDS2 eye vitamins and hoping for the best. I try to follow the Mediterranean diet and protect my eyes from the sun."
"There are no treatments for my MD. I recently completed my participation with Georgia vocational rehabilitation services. Through them, I was able to receive low vision tools, receive tuition to school, receive computer and O&M training, and have since started a new career as a massage therapist." (Tiffany lives with Stargardt Disease).
"There’s not much treatment for dry AMD other than having 6-month check-ups with my retina specialist, taking eye vitamins, eating healthy, and managing my weight. My management of dry AMD is more mental and involves keeping a hopeful, positive outlook, in spite of my vision challenges. I try to focus on what I CAN see and not as much on what I can’t see."
"Since March of 2019, I was going every 6 weeks to be rechecked and through most of the next year and a half, I was getting an injection in the affected eye. I have been fortunate in 2021 to have had a good 6 months of no injection needed. The present plan calls for a recheck in 8 weeks. So pleased." (Debbie was diagnosed with myopic macular degeneration.)
"I see my ophthalmologist every 12 months. She says I can come 6 monthly if I like, but if I check my Amsler grid regularly, 12 months is fine. I visit my optometrist every 6 months, too, and she takes an OCT, so I don't go more than 6 months without having my eyes examined. I take AREDS2 supplements daily and eat lots of greens and colored vegetables." (Wendy was diagnosed with dry age-related macular degeneration.)
"With 1 eye 'dry' and 1 'wet,' I take my AREDS 2 type vitamins as recommended to help keep the second eye from advancing to wet. I see my retina specialist every 7 weeks for an anti-VEGF injection. This schedule seems to work best. He monitors my dry right eye closely as well on each visit."
Treating and managing macular degeneration can lead to lifestyle changes. We asked our advocates: "What lifestyle changes have you made since your diagnosis?" to learn more about their experiences.
"I now wear sunglasses all the time when I'm outside. Summer and winter, sunny and overcast. I also exercise daily for 2 reasons. I know that keeping my weight down helps to relieve pressure on my eyes and I know that exercise helps my body to release hormones necessary to absorb nutrients properly.
I also have a therapist who works with me extensively on grief of vision loss and how to keep anxieties at bay. I eat for my eyes, and have added in necessary nutrients like lutein and zeaxanthin while trying to eliminate sugar, processed foods, white pastas, and breads as much as possible."
"No more night driving or driving at dusk or dawn. My reading is on electronic devices versus books and magazines. Lighting in my house has been upgraded and I am very careful on stairs or in any situation where depth perception is important. This is because my dry AMD eye has gone into geographic atrophy (GA) and is 20/400 which is legally blind. By the way, its peripheral vision is as good as ever, it’s just the central vision I have lost."
"I switched to olive oil from canola. I eat a large spinach salad most days. I avoid simple sugars and eat whole grains. I walk 5-6 days weekly. I have lost a few pounds and try to maintain a healthy weight."
"I order groceries online now. Never thought I would be that person. I like picking out my own produce. Also, I’ve become more accustomed to rideshare and I eat a lot less fast food."
"Since my diagnosis, I’m much more careful about wearing good sunglasses. I have taken eye vitamins consistently for the last 9 years. I no longer drive at night or in unfamiliar areas when I might have to read addresses or small signs. Driving in the rain is another situation I avoid. Rather than getting together with friends for dinner, now we get together for lunch."
"Diet and exercise changes are the main ones. I aim for a Mediterranean-type diet which I manage most of the time. This diet is good for our overall health, so I try hard to stick to it. I walk a few kilometers every day, and I swim every day in the summer. The big lifestyle change that I am considering is moving to a smaller house in a walkable neighborhood. I don't want to leave this move until it becomes too difficult to accomplish."
"I started watching my diet more closely, especially including more antioxidants. Which helped me lose the excess weight. I had quit smoking before I was diagnosed, thank goodness. I had always been careful about wearing sunglasses, but switched to the kind that shielded better at the top and sides."
Learn more about treatments by type of macular degeneration.
Life with macular degeneration changes things, whether that means more trips to the eye doctor or dietary changes and supplements. How has life changed since your diagnosis? What's your treatment plan?
Do you feel that you've maintained independence with macular degeneration?