Living with AMD as Patient or Caregiver: A Mother and Daughter Share Their Story

The monthly BrightFocus Chats are an opportunity to learn about age-related macular degeneration (AMD) from a range of professionals: researchers, doctors, occupational therapists, social workers, and more. Recently, however, the Chat focused on the perspective of an AMD patient and her caregiver: Leona, who has advanced or “wet” AMD, and her daughter Sharon. They live in Portland, Maine.

Dr. William Li, the President and Medical Director of the Angiogenesis Foundation, began the discussion by noting that he met the two women at a summit on health needs of people with AMD. He commented that Leona, who has been living with AMD for decades now, has a unique perspective to share as she was diagnosed with AMD years before the current treatments became available in 2006, and now appreciates what they have to offer. These groundbreaking medicines called anti-VGF treatments, given by injection, work by blocking the abnormal blood vessels from growing into the eye. They’ve “dramatically changed the prognosis for patients affected by AMD,” says Li.

One Chat listener asked if the eye injections are painful.  Leona said that in years past, a certain antiseptic mixture stung, but that the injections themselves were not painful. “I don’t think that reluctance to getting injections should keep you from getting them.  They are very helpful and we’re very lucky now to have them.”

For Leona, the path to her diagnosis was a slow dawning. “I was still teaching, still working, and in the beginning just my ophthalmologist knew that I had AMD. It wasn’t evident to me, but it became evident. I retired a few years after the diagnosis, still driving and living my normal life.” Slowly it became obvious that she would “have to limit my activities.” Recognizing that she would need help, she moved to Portland, Maine, to be near her eldest daughter, Sharon.

Sharon, too, says that as a caregiver, it took her a while to realize the import of what was happening. “I would say I wasn’t as attentive to, ‘Oh my goodness, now we have to do a lot of things because life is going to change.’ I think it was a while before I realized how important it was to attend doctor appointments with her and to make some changes.”

Sharon says she would now advise other caregivers, “Go to every doctor’s appointment.  Attend every doctor’s visit or get somebody to attend and take notes, ask the questions that the patient may forget to ask. But, definitely, from the beginning, from the time somebody says “I think this is what I’m seeing,” take it seriously.”

Leona also has a cautionary tale for other patients. “I misread the symptoms partway through this odyssey, and I didn’t get to my eye doctor right away, thinking that the graying of my vision was from cataracts, rather than being a sign of my macular degeneration having gone from dry to wet, and I was having a bleed. And by the time I got to an appointment, I had lost some more vision. Who knows, but it might have been prevented.

“So, even if you don’t want to be one of those patients who calls with every symptom, I encourage you to be one.”

Leona and Sharon had many positive things to share, including the invaluable help of groups like the Iris Network, which provided mobility training for Leona. The group had occupational therapists and other specialists who helped her figure out where marks of street lights were, how to cross the street, and so on. “That was enormously helpful in keeping her independent so that she can leave her apartment in good weather and walk downtown,” adds Sharon.

Leona notes that as her condition has changed, so have the various forms of technology that help her maintain independence within the home: magnifiers, computers, reading machines, or labels on appliances.

Both women have advice to doctor’s offices. “I have a very strong recommendation that there be a social worker or clinical psychologist who can help with counseling,” says Leona. For both the patient and the caregiver who is suddenly thrust into a new role, there’s a risk of depression or anxiety. Medical practices would benefit from counseling or other support services for patients.

Leona recognizes what she has lost, but is still grateful for what she has: supportive family and friends, helpful community groups, and new technology. She also appreciates the “little things,” like being able to put a plug into a wall socket, or cooking, or operating the laundry machines.

“You just have to be patient. I have learned that I can’t do things as nearly as quickly as I used to, but to do them at all is still a triumph.”