Dorothy* just celebrated her 90th birthday. She was diagnosed with macular degeneration five years ago, and currently lives with her daughter’s family in Oregon. She continues to be active in community and church groups, but has had to give up some of her independence due to the macular degeneration.
What was your first sign that something was wrong? What symptoms did you experience?
I didn’t really have any symptoms. That's the thing with macular degeneration, there are rarely symptoms.
What was the diagnosis experience like?
It was back in 1994 when I went for my regular appointment with my ophthalmologist and he told me I had some bleeding in my retina. My doctor told me I had macular degeneration. I wasn't sure what all that meant, but he was very good about explaining it to me and gave me a lot of literature to read.
What was your initial and then longer-term reaction to the diagnosis?
It was pretty devastating. I was very worried about how it would limit me, and the things I like to do. I had my own house that I had lived in for over 60 years, and the first thing I thought about was whether I would be able to stay in my house. My daughters had been talking about me moving in with them for quite some time, so I knew I had a good place to go. I was able to keep things up at my house for a couple of years, but then I moved out to Oregon to live with my oldest daughter and her husband in 1996. I just get frustrated sometimes that the macular degeneration limits what I can do on my own—like driving a car.
How is macular degeneration treated?
I go to the ophthalmologist for my regular check-up every three months. Whenever there's a problem, they tell me that I have to come back in a few days to do the fluorescein angiography. That's where they photograph the blood vessels in the retina. Then the doctor looks at it and decides whether I need to have laser surgery or not. Sometimes they won't do the laser surgery depending on where the bleeding is. If it's borderline on the macula, which is the central vision spot, and they can't see the exact source, they won't do it—because they're afraid they can do more damage. So, sometimes I wait and come back in a month.
I've had laser surgery three times. The laser surgery is very nerve wracking, but it's not really painful. It usually makes for a long day. I have the exam in the morning, and then I wait for several hours before they do the surgery. I'm usually very exhausted by the time I get home. The surgery makes me have blind spots around the macula, which bothers me. But I know I have to have the surgery if I want to keep my sight. I don't have to take any drops or medications. The doctor tells me to look for symptoms such as looking at things with straight lines to see if the lines look wavy.
Did you have to make any lifestyle or dietary changes in response to having macular degeneration?
I've had to make lots of lifestyle changes. The biggest change was that I had to stop driving in 1998. I still fix my own breakfast and lunch, but I have dinner with my daughter’s family. I don't do a lot of baking anymore, which I really miss doing. My daughter takes me to the grocery store once a week, or I give her a list of things I need. I love to read, but I don't read as much as I used to. I have to read things in large print, so that limits me. I don't like losing my independence. I want to do things on my own.
I didn’t have to make any dietary changes.
Did you seek any type of emotional support?
No, not really. I just do what I need to do.
Does having macular degeneration have an impact on your family?
I came to live with my daughter and her family in 1996. Actually, I live in an apartment, which is attached to their home. They wanted me to come and get adjusted to a new place in case I lose my sight completely. It’s good that I have my own separate quarters because we don't always agree on how things should be done. But I appreciate all they do for me, and know this is how it has to be.
What advice would you give to anyone living with macular degeneration?
Continue to look for symptoms so you can save whatever can be saved. Your sight is so important. Be prepared to give up some of the things you like to do. It’s just a necessary part of having the disease.
*Not her real name
Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.
As told to Virginia Mansfield
Prevent Blindness America