Community Views: Macular Degeneration Symptoms that Bother Us

Symptoms of macular degeneration can be different for everyone, and sometimes they vary from day to day. Some are a minor annoyance but many can be quite disturbing.

Coming together to share:

We recently reached out to members of our Facebook community to find out more and asked:

The latest macular degeneration symptom that has bothered me most is _________.

More than thirty of you shared your thoughts with us, and here is what you said.

Loss of central vision

This is one of the more serious symptoms of macular degeneration and can occur in the dry or the wet form if the disease progresses. Some of you have a large dark area in the central vision, and others have numerous, smaller blank areas or grey spots.

“The center vision just about gone.”
“Small, greyed-out areas”.
“Losing center vision as wet has turned to dry..”

Trouble with driving and depth perception

Many people seemed to agree that one of the symptoms which worried them most was difficulty with driving. Some people have already lost their license or given it up voluntarily. Others have decided to drive only in daylight.

Many community members are worried each time their driver’s license test comes around.

“Driving is becoming more challenging.”
“I had a little episode while driving that made it a little scary to be on the road.”
“Depth perception ….. especially parking.”

Not recognizing faces

This is a difficulty faced by quite a few in our community when problems with central vision occur. It can make social interaction challenging. To avoid this difficulty, some people ask their friends to introduce themselves as they approach. Many of you just wave to everyone in the street to avoid appearing rude.

“Not recognizing people’s faces until they get rather close.”

Floaters

Whilst floaters aren’t necessarily a symptom of macular degeneration, many in our community have them. Sometimes they appear after injections, and other times they are a permanent fixture. Many people learn to live with them, but others find them very annoying.

“I have a new floater – a black circle.”
“One floater that looks like a little gnat that floats around my vision.”
"I have a new floater...a black circle with a bright center.”
“Black floaters and not seeing an item right away.”
“Those pesky floaters can be very distracting.”

Glare and change in light levels

Coming from outside to inside is difficult for many of our community. They find it difficult to go from a brightly lit area into a dim area. Whilst this is normal to some extent, people with macular degeneration take much longer to adjust to the change in lighting.

“Can’t see the sunlight coming in through the windows.”
“My vision is slow to accommodate for changes in bright light to dark.”

Reading, arts, and crafts

Many community members have difficulty with reading both at home, and when shopping. Others have trouble with their hobbies and pastimes.

“Not able to do arts and crafts like I used to and reading comments on FB.”
“I’ve noticed a reluctance in reading magazines.”
“Trying to read stuff on the shelves at the store.”
“Print in knitting and crochet patterns is very small.”

Blurry vision and wavy lines

“It’s blurry most of the time.”
“It’s pretty blurry.”

This is a comment that comes up a lot. Some people seem to have blurry vision all the time and for others, it is better some days than others.

We're in this together

Thank you to everyone who responded and answered this question. We appreciate hearing about the symptoms that bother you most, and how they affect your life. It helps to know we are not alone, and that we are all in this together.