Worried About Disease Progression? We're Here for You
Here at MacularDegeneration.net, many of our community members have expressed worry about the future, including possible vision changes and disease progression.
If you have experienced worry, anxiety, sadness, or other emotions about the possibility of progression, you're not alone. We've put together a few articles from our Community Health Leaders on the topic, and we hope you'll find comfort in your shared feelings and experiences.
Click the blue buttons labeled "Read the full story" under each quote to read more.
Noticing vision changes over time
Brown Eyed Girl: "The most obvious change is in my sight. Up until recently, I’ve had little problem. Now I see wiggly lines on things like doorframes and windows inside, and telegraph poles outside. Luckily, my better eye sometimes takes over, and things sometimes seem normal when I look with both eyes.
"It’s harder to distinguish colors now. My television remote says to push the green button to do something and push the blue button to do something else. Oh, dear! Which one is which? I’m not quite sure! I often end up somewhere I didn’t want to go..."
Wondering about our outlook
Debbie Havens: "By turning on the windshield wipers, I created a smear of grime, dirt, and water, thus obscuring my view even more. At the time, I remember thinking, 'Is it the windshield that is not clear, or have my eyes taken a dramatic turn for the worse?'
"Honestly, this new thought is scary for me. I wonder if this is the direction I am heading toward – a field of vision that is a combination of smudge and obscurity. Thus far, I am dealing with MMD in 1 eye. Is this what the outlook would be if I was afflicted with MMD in both eyes?"
The frustration of moving through stages
Sharon Moore: "My retina specialist diagnosed intermediate stage during my biannual visit. By this time, my blurred vision was much worse.
"Over time, other symptoms started. I noticed distortion, and colors began to fade. I also experienced falls caused by a lack of depth perception. When I closed my left eye, lines appeared wavy. I also developed a gray spot in my central vision.
"The intermediate stage was marked with frustration. I needed more light, and a magnifier was essential. Cooking was especially hard. I couldn’t read the recipe or see the markings on measuring cups.
"Now, I notice my left eye no longer compensates for the right. I see wavy lines and greater distortion..."
Was I scared? Yes!
Richard Hallberg: "I’m a 72-year-old guy that was diagnosed 9 years ago with AMD in both eyes — dry in one, wet in the other. I made an uneasy truce with this disease through the years, as I was quite stable with about 20/30 vision in both eyes for most of this time.
"Was I scared? Yes! However, my vision remained stable for such a long time that I became used to my lot in life. That is... until now! Just in this last crazy year we’ve had, my dry AMD eye went from 20/30 to 20/400! I am now legally blind in one eye..."
Accepting our diagnosis, despite the worry
Andrea Junge: "Acceptance is complex. Some days we feel a sense of serenity and normalcy, and then, BAM! The next day is filled with worry about the future.
"For me, acceptance is an everyday process. There may not ever be a permanent acceptance of all of the components of this diagnosis. But I do know that, over time, we learn to have a general sense of acceptance. We may not be okay with losing our central vision, but we can accept that it might happen.
"Acceptance simply means we acknowledge it and are as okay as we can be in spite of it..."
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