My Daily Life With Geographic Atrophy

By Sharon Moore

2 min read

My journey with age-related macular degeneration (AMD) began over 9 years ago. As I progressed from early-stage dry AMD to my current stage, geographic atrophy (GA) my life as I knew it has changed.

There have been many losses. Hobbies such as sewing and crochet were given up one by one. Some with GA do manage to continue the hobbies they love; my frustration outweighed the pleasure of some of my hobbies. Nighttime driving or trips to the city are now impossible on my own.

I have realized that focusing on my losses was bad for my mental health. I needed to find a way to hang on to my joy in life by focusing on all the things I can do with low vision.

Holding on to my hobbies and discovering new ones

My favorite new hobby is gardening. Low vision makes it a challenge, but not an insurmountable one. As my husband's health has declined, I have taken over care of the lawn and mowing. To my surprise, I love being outdoors.

Reading is my favorite hobby. I refuse to allow low vision to rob me of reading. Thanks to accessibility features on my iPhone and iPad, I can enlarge the text or zoom in when needed. I listen to audiobooks occasionally.

I enjoy cooking, and low vision hasn’t stopped me. I use bump dots for appliance settings. I am gradually replacing my appliances with Wi-Fi-enabled ones. This allows me to use voice commands with my smart speaker. With accessibility features, I can still read recipes. I have the option to have recipes read aloud to me if necessary.

Advocacy and connecting with the community

The opportunity to write articles and moderate social media and our online community for MacularDegeneration.net is my new passion in life. I love using my experience with AMD to raise awareness and provide information for those with macular degeneration. It is not uncommon for me to get phone calls from someone newly diagnosed since I share my journey on Facebook.

Last week I had the opportunity to film a video for another site about my life with GA. The video highlights the aids I use to manage my vision loss. I shared how my faith and strong family support help me cope. It is fulfilling to know my experience with vision loss may help someone else with macular degeneration.

What I wish others knew

Macular degeneration is an invisible condition. There are few outward signs that we can’t see what others do. I wish people had a better understanding of what life is like for those of us with vision loss.

If I ask for help with simple tasks, it’s because I simply cannot see. I can’t see which button to push on the elevator. I have trouble completing transactions on a keypad. I can’t see what you are pointing out to me. I may not recognize you if you are more than a few feet away.

I wish others knew our lives may be challenging, but we can live productive and meaningful lives. We just need a helping hand at times to overcome the challenges.

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ChrissyZ Member
I always love your postings. I'm not at that critical point (yet) but your tips will stay with me. I am having a shot for an arthritic hip on Monday and eventually, I will need a hip replacement. Sometimes the pain is so bad, I must use a walking stick. But whenever I go shopping, I use my cane whether I need it or not because people afford me more consideration when they see the cane and they are patient with me when I'm crossing from the parking lot to the store. I see, on Amazon, they have special collapsable canes for the visually impaired. They all have red on them which, I guess, signals that the carrier has vision problems. Using and carrying such a cane might alert others to your situation and cause them to be more helpful and patient. Just a thought. 
1. Sharon Moore Moderator
 <inline-mention username="ChrissyZ" user-id="6740984"/> I am glad to hear you find my postings helpful. I loved your tip about using your cane in public. I walk with a pronounced limp and use a cane occasionally. It’s a great idea to use it in public as you do. I have the collapsible cane like you saw on Amazon. I use trekking poles when I walk for exercise. They steady me preventing falls. A bonus is they take pressure off the knees and hips. It’s always a pleasure to hear from you. Warmly, Sharon Moore patient leader
evie Member
I have very similar issues. recently, I've fallen several times in unfamiliar places.. Painted white lines on asphalt look Exactly like white structural barriers to me. Am i no longer safe on the street?
1. Sharon Moore Moderator
 <inline-mention username="evie" user-id="4600277"/> falls can take a toll on one’s confidence. I am very self conscious walking in public areas. Physical therapy helped me regain my balance and strengthened my core. I have only fallen once in the past year. Have you considered using a cane in unfamiliar areas or anytime you are walking on uneven ground? I use trekking poles whenever I walk outdoors. I hope you find safe ways to continue being active. Warmly, Sharon Moore patient leader
evie Member
thank you. after the first fall i started using a support cane. i.m not legally blind...don't want to misrepresent myself, but i feel i'm needing...something more/ i'm in nyc...i dont know about trekking poles!
1. Sharon Moore Moderator
 <inline-mention username="evie" user-id="4600277"/> a cane should give you better balance. There are variations on the white cane that indicated the degree of vision loss. This article can help you choose the appropriate one for you. <a href='https://www.cabvi.org/articles/what-are-the-different-types-of-white-canes/' target='_blank' rel='noopener noreferrer ugc'>https://www.cabvi.org/articles/what-are-the-different-types-of-white-canes/</a>. Sharon Moore patient leader
Phyllisflemming Member
The author of this describes how I feel on a daily basis just beautifully. Kudos to her. I also love her positive attitude. Im not sure that I have fully accepted everything I am going through but I am trying. I am entering my second year of the new drug Syforve and so far no change. I am truly working on being positive. Thanks for this beautiful story!
1. Sharon Moore Moderator
 <inline-mention username="Phyllisflemming" user-id="4254683"/> thank you for your kind words. I am glad my story resonated with you. I have my days when coping is hard but most days I manage well. I am so glad that Syfovre has slowed your progression. I just had my second injection of Izervay for GA. Warmly, Sharon Moore patient leader

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