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Group support when vision fades

Patients with vision loss share experiences, ideas, resources in OHSU Casey Eye Institute forum
Casey Eye Institute Vision Support Group
Participants in the OHSU Casey Eye Institute Vision Support Group look at assistive technology available from Irie AT, a vision support store in Corvalis, October 11, 2017. (OHSU/Kristyna Wentz-Graff)

When Lawrence Winans, Ph.D., faced some challenges reading small print and dealing with minor distortions to his vision, he started looking for answers.

After confirming he has age-related macular degeneration, he wanted to get plugged into sources of information on how to work around the condition without interrupting his lifestyle. He sought out an opportunity to discuss problem-solving with other people who also were learning to live with changes in their vision-

“I wanted to hear the tips and tricks other people had come up with,” said Winans, who is now retired from his career as a scientist at OHSU in Portland, Oregon.

Winans wasn’t alone. It was feedback from patients like him that prompted social worker Tara Albury, L.C.S.W., with the OHSU Casey Eye Institute, to pilot a vision support group.

The group was set up so that those with vision loss, as well as their family members, could share information, support each other and benefit from guest speakers as well as product demonstrations.

“People want to connect with other people who share their experience and discuss what they’re going through,” Albury said. “They can be working through changing roles in their relationships, feelings of loss and grief as well as feeling burdensome to the people who they rely upon for help.”

The support group setting is also conducive to trying out new tools. Albury schedules guest speakers for the group and recently brought in a representative from Irie AT of Corvallis, Oregon, so that participants could experiment with devices that enlarge entire pages of a book, read text aloud and provide large areas of magnification so users can pursue hobbies such as knitting. 

Demand for this kind of support group is climbing. Age-related macular degeneration remains the leading cause of adult legal blindness in the U.S., with the number of cases expected to surge in the next several decades as the population grows older and lives longer.

“Millions of people in the United States have this problem, but they are battling it alone. Our group is an opportunity to make friends and learn from each other to make life easier,” Winans said. 

For more information about the vision support group, contact Albury at 503-494-1618.

Information about the vision support group, as well as demonstrations from Irie and other vision aid dealers, will also be available at the Macular Degeneration and Vision Expo, which takes place Saturday, Oct. 28, from 9 a.m. to 4 p.m. at the Doubletree by Hilton Hotel, 1000 N.E. Multnomah St., Portland, Oregon.

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