“The Beginning of a New Life”: Adapting to Macular Degeneration
By Maureen Foley, as told to Julia Roth, BrightFocus Foundation
Published on:
Macular degeneration runs in my family. I’m first generation Irish, and over the years I heard my maternal aunts and uncles talk about their vision problems. It didn’t mean anything to me until I was diagnosed with age-related macular degeneration (AMD) in 2013. Now it is in my generation; I have wet AMD, my sister has dry and wet, and a first cousin has dry.
A Surprise Diagnosis
I always had a career and was chief operating officer in the pharmaceutical industry. I led an extremely busy life with my husband until his death in 2011. A year later in 2012, the company relocated out of state. After dealing with all that is involved in the relocation of a company, I retired. I hadn’t been able to take care of myself for a few years and in 2013 decided it was time to do so.
I knew my vision had declined and thought I just needed a new prescription. I made an appointment with an ophthalmologist who took one look at my eyes and said, “You need to see a retinologist immediately.” Fortunately, one was available. I had my first injection that day and was overwhelmed by what was happening to me.
My initial reaction was, “Okay, I’ve got it and need to deal with it.” Keenly aware there were no treatments available for my aunts and uncles, I was grateful for current treatments for AMD.
Finding Perspective
I tried to stay positive and keep going. Even though I was doing everything my doctor instructed me to, including getting regular injections, my vision continued to decline. In 2019, I faced the devastating realization I needed to stop driving and did so voluntarily. Soon after, it was extremely difficult to hear a low vision doctor confirm that I am legally blind. I had begun to experience visual hallucinations, constant flashing and bouncing balls. I was no longer independent and would need to rely on help from others. I cried and knew it was the end of life as I knew it and the beginning of a difficult and challenging one. I was going to need to learn new ways of doing things and re-adjust. It is not easy and every day I learn something new.
Seeking Support
I had no idea where to turn after the diagnosis. Fortunately, a friend and neighbor shared with me a newsletter from BrightFocus Foundation. Since then, I have participated in the nonprofit’s monthly Macular Chats and Age-Related Macular Degeneration Community Circle group. I've been able to connect with people across the United States who are also living with macular degeneration. BrightFocus has been a huge part of my life.
In terms of finding other local resources, the Registry of Motor Vehicles was quick to notify me that I could no longer drive, but after that, it was hunting and scratching and talking to anybody who would listen to find out what kind of help is available and where to go.
Luckily, Massachusetts is very proactive. Within the state, there is the Massachusetts Commission for the Blind and the Massachusetts Association of the Blind and Visually Impaired. I was able to receive a handicap sticker so when somebody takes me driving, I have a legal parking space. Safety evaluations, white cane training and assistive technology both in person and on Zoom are provided.
A big challenge was I would constantly confuse a $1 bill with a $10 bill, or a $5 with a $50. A very simple suggestion is if one reverses the bill, the right corner has the dollar number in a larger size. I now file everything in my wallet upside down. I’ve even taught the tellers at the bank. Now when I withdraw money, they count the bills in the way I can see the larger numbers on the back of the bills.
I’m trying to learn everything I possibly can. There are days when I just wish I didn’t need to deal with it anymore. Unfortunately, that’s not the case. The reality is one who has low vision or is totally blind must keep trying.
Listen to a conversation with Maureen and Sheila, who is also living with macular degeneration, during a BrightFocus Macular Chat discussion.
Additional Resources
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BrightFocus Macular Chats: Live Conversations with Doctors and Vision Specialists
About BrightFocus Foundation
BrightFocus Foundation is a premier global nonprofit funder of research to defeat Alzheimer’s, macular degeneration, and glaucoma. Through its flagship research programs — Alzheimer’s Disease Research, Macular Degeneration Research, and National Glaucoma Research — the Foundation has awarded nearly $290 million in groundbreaking research funding over the past 50 years and shares the latest research findings, expert information, and resources to empower the millions impacted by these devastating diseases. Learn more at brightfocus.org.
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