“I was detected glaucoma back in 2012, I guess it was. I had several operations done. This is glaucoma by the way. My left eye is completely gone. My right eye, all I see is shadows. I can tell where the light bulb is, and that's about the best I can come up with. Can't see much else . . . I recognize that glaucoma is not a disease that you can identify very easily. I mean, it sneaks up on you and you really don't know what's happening.”
Everyone’s journey with glaucoma is different, and not everyone experiences vision loss like this. But many people relate to what Kenneth describes: the way glaucoma can unfold quietly, and how disorienting that can feel.
At Hadley, we hear these kinds of stories often. They’ve shaped the workshops, podcast episodes, and social-emotional support we offer.
Preparing for vision changes
Adjusting to glaucoma can be challenging. Hadley members mention that our free workshop series Living with Glaucoma helps them deal with glaucoma. It provides helpful tips and strategies for continuing to do things without relying so much on vision.
Connecting with others
Kenneth understood that to live with his vision loss, he had to find a way to stay connected to people. He shares in the Insights & Sound Bites episode “This can be a lonely business”:
“I would start out by saying that this can be a lonely business if you let it. And my first commitment to myself was to find either using my telephone or other technologies to maintain a link with the rest of the world. If you end up not doing that, then you're losing out, number one on time because time does not stop. And number two, there are so many, many people, so many, many things, so many organizations and so many practical things that you need to maintain a link with so you're not by yourself. It doesn't work.”
Communities like the public Facebook Living with Glaucoma Support Group and private Facebook Glaucoma Support Group provide places to ask questions and offer encouragement. They’re not hosted by Hadley, but Hadley members take part.
Hadley’s Donahoe Center for Support can help you connect with others walking this same path: 800-323-4238.
Share with family and friends
Many Hadley members say the workshop, Living with Glaucoma, is very useful for sharing with family and friends. The Share button below the video lets you share by email or copy the link; if you’re on your phone, you can share by text (SMS), too.
Partnering with your medical team
Regular checkups are essential for controlling glaucoma. Hadley’s Visiting Your Eye Doctor workshop and the video Eye Tests offer tips for preparing for doctor appointments.
Dr. Jullia Rosdahl, a glaucoma specialist from the Duke Eye Center, answers common questions about glaucoma, its risk factors, and treatment options, and Angela Delgado shares her story of living with glaucoma in the Hadley Presents episode Glaucoma Questions, Concerns, and Answers.
If you’d like tips for managing important conversations with your eye doctor, you may appreciate what Hadley member Judy Box has to share in the Hadley Presents episode Getting the Most from Your Eye Doctor.
Supporting eye health
Dr. Sophia Bakri of Mayo Clinic shares in the Hadley Presents episode Everyday Choices That Can Influence the Course of Eye Disease how small changes can influence the course of an eye condition such as glaucoma.
All of Hadley’s practical resources and emotional support are free. We’re here to help!
If you are living with glaucoma, what kinds of resources are you wishing you could find more easily? We’d love to hear from you in the Comments below.
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