Susan Talks About AMD and Self-Advocacy
Susan was working as a nurse at the Charlotte County Department of Health when she noticed her vision getting fuzzy. It was a gradual change, hardly noticable.
Then one eye suddenly began to bleed internally while at work. Her eye doctor diagnosed her with Age-Related Macular Degeneration (AMD,) a common cause of vision loss, particularly for those over the age of 55. Vision in one eye was lost, and for eight years her retina specialist has been trying to save some vision in the other eye. AMD is incurable, and its damage inside the eye cannot be reversed, but treatment can sometimes slow its progression, especially if diagnosed early with an eye exam.
Susan says, “I got to a point where I couldn’t go on working and it wasn’t safe to drive.” She now lives with her sister, but continues to be independent otherwise.
Fortunately, she heard about Lighthouse at a clinic visit and also from two friends, both of whom were Lighthouse clients. She was referred to Lighthouse Vision Loss Education Center in Sarasota, whose service area also includes Charlotte County. A Lighthouse certified instructor interviewed Susan and together, they planned the best course of training to fit her immediate needs.
Susan was introduced to daily living skills in the Independent Living Program and Mobility Training, which allowed her to navigate at home and in her community with minimal assistance as her vision changed. She learned tips, strategies and simple modifications to help with her daily routine.
When enlarging the text on her computer was no longer helpful, Susan received Assistive Technology training from Lighthouse instructors and learned how to use screen magnification and screen reading software to allow her to interact on her computer. She got an iPhone, which has accessibility functions built in, and praised the instructors who taught her how to use it and various apps.
“They’re amazing, they patiently talked me through step by step over the phone,” she said.
Susan still attends weekly Zoom sessions, learning from the tips and experiences of other vision impaired people also attending the sessions. She recommends Lighthouse to anyone she encounters with vision loss and speaks highly of the instructors who helped her adjust to life after the loss of her eye sight.
She says the most important single thing she learned is, “You’ve got to self-advocate. Keep following up with the doctors, take charge of your own case and get whatever training you can.”