Low-vision support group provides resources, friendship

November 24, 2018
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ADVANCE FOR USE SATURDAY, NOV. 24 - In this Nov. 9, 2018 photo, Tina Egge, a member of the board at the Poe Museum, uses a lighted magnifier to view the bust of Edgar Allen Poe on display in the garden of the museum in Richmond, Va. Egge, who has diminished eyesight, is a member of a low-vision support group. (Bob Brown/Richmond Times-Dispatch via AP)

RICHMOND, Va. (AP) — Mary MacKenzie held up the talking pill bottle that she had brought for show-and-tell at the low-vision support group meeting on a recent Wednesday.

Because she can’t see color due to her macular degeneration, an age-related disease that causes blurred and limited vision, it’s difficult for MacKenzie to sort her medications, she explained to the roughly 20 women gathered at the Stony Point Surgery Center. Because of this, she made a mistake on her medicines when she had bronchitis, delaying her recovery.

To demonstrate, MacKenzie pressed a button on the top of the pill bottle and a recorded voice announced the name of the drug and the prescribed dosage.

“It is a lifesaver,” she said.

The support group, which is sponsored by the MEDARVA Foundation, a Richmond-based nonprofit organization focused on improving life for those with low vision, launched in April under the leadership of Dr. Suzanne Kim, the director of the organization’s low-vision center at Stony Point Surgery Center.

Kim had seen the need for the support group in the struggles of her patients. Many of them, particularly older people, had trouble finding transportation, had lost a degree of independence and felt socially isolated. Kim, along with occupational therapist Mary Bullock, decided to start the group, which meets on the first Wednesday of each month, as a resource for people to connect, share their challenges with others who can relate, and provide solutions and tools that can help improve their lives.

The meetings have had a steady attendance of 15 to 22 people each month, Kim said. Attendees range in age from their 40s to 90s and have varying degrees of vision loss.

That’s one of the reasons Kim avoids using the word “blind” when describing the support group or the patients she treats.

“When (people) hear the term ‘blindness,’ they think ‘no vision,’ ” she said.“Everyone experiences vision loss differently.”

For November’s meeting, members of the group were asked to bring a visual aid tool that has helped them navigate life with low vision.

MacKenzie had brought her talking pill bottle. Others presented clip-on magnifier glasses, a smartphone app that magnifies text, the Amazon Echo and Google Assistant, and shared other tips, like downloading audiobooks.

Tina Egge said she downloaded apps from local libraries so she could listen to free books.

“I was an English teacher,” Egge told the group. Having access to the audiobooks “has really lifted my spirits.”

MacKenzie also brought bracelets labeled “VIP.” ″For visually impaired person,” she explained.

The 90-minute meeting was punctuated with humor.

“I can tell by your voices you’re very pretty people, but I can’t see anything,” MacKenzie told the group as she introduced herself.

“You’ve got to have humor,” said Bullock, whose son has no vision. She explained that she uses her own “off-kilter” humor to lighten the meetings.

That lighthearted approach showed itself in the suggestions that group members had given when Bullock asked for their opinion on what they should name the support group.

Suggestions included “Vision Insight Group,” ″Vision Inspired Group” and “Visionaires.”

And for a suggested tagline: “Oh say, can we see?”

Many in the group laughed at the suggestions that poked fun at their situation before the mood turned serious.

Kathy Noblin shared that she had suddenly lost her vision in August as a result of acute retinal artery occlusion — when an artery blockage prevents oxygen from getting to the retina nerve cells.

“I went on the internet trying to find support groups,” Noblin shared. “I couldn’t find anything.”

She suggested that the name of the group be straightforward, so as to make it as accessible as possible.

After discussion and a vote, the group settled on the name: the MEDARVA Low Vision Support Group. It was the same name it had been temporarily dubbed.

To conclude the meeting, Bullock went around the room with a microphone — as some of the members have difficulty hearing as well as seeing — asking attendees to introduce themselves.

Nearly every person shared a story of vision loss. For some, like Noblin, it was new. Others, like Ruth Perkinson, had been dealing with it for years. For some, it was age-related; for others, the cause was in their genes. Some could still see enough to drive, while others had no vision at all.

In spite of the differing circumstances, many expressed the same appreciation of having the support group.

“I think that’s what we all need,” said another member, Joanne Perez. “To know we have a sister that knows what we’re going through.”


Information from: Richmond Times-Dispatch, http://www.richmond.com