A patient’s perspective on what the retinal implant has meant to her
In psychophysical testing, Kathy B. demonstrates how her artificial retina implant allows her to walk along a white line to its termination.
A highly functioning person with a job, family, and household to tend to, Kathy B. doesn’t feel like she’s blind despite the fact that she’s had no vision for about 15 years. Nevertheless, she was excited when she recently was able to find the full moon in the dark, nighttime sky.
“We were out walking, and I looked upwards, scanning my head back and forth,” Kathy B. explains. “All of a sudden, I saw a big flash, and I asked my husband, ‘Is that the moon?’” It was, and she began thinking about how long it had been since she’d last glimpsed that luminescent celestial body.
Kathy B. is one of 10 people in the United States, 22 people worldwide, so far to receive the Argus™ II, a retinal implant with 60 electrodes being tested in clinical trials. The device is intended to provide rudimentary sight to blind people by stimulating the retina to send signals to the optic nerve and, ultimately, the brain, which perceives patterns of light and dark spots corresponding to the electrodes stimulated.
Her progress in learning how to decipher the meaning of the flashes that she’s seeing has been slow but steady. And although it’s still too soon to tell how much of an impact the prosthesis might have on her daily life, she’s encouraged for the future.
“I’m grateful to be able to give [the researchers] information that is helping to move this forward,” Kathy B. says, adding that she would undergo the surgery again.
Still in her early twenties when she began losing her sight, Kathy B. was certain that advancements in medical science would produce a cure for her disease within 20 years. Now 57, she notes, “Little did I know then that I myself would be involved in medical studies.”
Journey into Darkness
Until she was 23, Kathy B. had no vision problems whatsoever; she didn’t even wear glasses. When she started tripping over things, she went to an ophthalmologist, thinking it might be time for a pair of eyeglasses. As it turned out, it wasn’t that simple. For several months, nobody quite knew what was happening with her eyes. Finally, she received a diagnosis: retinitis pigmentosa, a hereditary retinal disease that first steals a person’s peripheral vision, eventually leaving only the central vision. In some cases, even that can disappear.
“They told me I would lose my vision—that it would go very slowly, but they didn’t think I would go totally blind,” Kathy B. recounts. “Unfortunately, I did.”
During the first 5 years, her vision deteriorated fairly quickly. She had trouble seeing at night and in dim light, and soon she no longer was able to drive. Then her vision stabilized for a time before it started getting worse again. Fifteen years after the initial diagnosis, Kathy B. was completely blind.
She had to give up her job at the University of California–Irvine where she worked in the physical plant department embossing and engraving campus signs and keeping key records for locksmiths. She then became a stay-at-home mother until the youngest of her three daughters went off to college. With her husband at work all day and her children gone, Kathy B. acquired a guide dog to help her get around on her own. She also learned how to read Braille at the Braille Institute, where she wound up with a part-time job as a receptionist.
Through it all, she has maintained her optimistic outlook. Not being able to drive or read print was hard for her. Knowing, however, that her children could have this disease, she believed she had to set a positive example for them.
“I didn’t let it affect my life,” Kathy B. says. “I really just went on as if I could still see.”
To this day, she does everything she possibly can on her own. As her husband puts it, blindness isn’t so much a disability, but rather an inconvenience for her. “It just takes me a little bit longer to figure out how to do something or get somewhere,” she explains.
In psychophysical testing, Kathy B. demonstrates how her artificial retina implant allows her to localize a bright square on a dark computer screen.
Kathy B. had been blind for nearly 15 years when she heard about the Argus™ II clinical trials from her mobility instructor. Deciding that at this point in her life she had nothing to lose, she opted for the surgery when she found out she was a suitable candidate.
At first, Kathy B. didn’t see anything. Then occasionally she’d see a flash of light. Now, she sees ‘percepts’ whenever there’s a strong contrast between light and dark, indicating that something is there. Through testing at the clinical site and using the device on her own, she’s learning to interpret what these percepts mean.
Progress has been slow. “Everyone tells me to be patient, that this will take awhile,” she says.
She’s not expecting much, certainly not any miracles. Still, “It’s always a nice surprise to actually be able to do something I haven’t been able to do” like sorting laundry, Kathy B. says. Against the light-colored carpet in her home, she’s able to pick out dark-colored clothing from light-colored clothing, separating it into piles. Likewise, if she’s walking down a sidewalk bordered by grass, she can walk straight down it as she picks up percepts from the edge of the darker grass.
Software upgrades to the unit are making it easier for her to see percepts in dim light, and their increased persistence is allowing her to see the angle of a line and determine its direction. In this way, she’s able to detect the edges of objects, such as doors or windows.
She also sees movement. “The light will move, so if a car goes by, I can tell which way it went,” Kathy B. explains. Similarly, when she watches a basketball game on TV, for example, she can discern which way a player is running down the court. “I can’t see the person, but I feel like I’m more involved in the game to even be able to pick up the movement,” she says.
Additionally, the implant is helping her at work. If she hears something, she can glance up, scan, and get a flash, indicating that someone is at her desk. “I can’t see the outline of the person’s body, but I can ask them if they need help because I know they’re there,” she says.
Kathy B. was the first person in her family to be diagnosed with retinitis pigmentosa. Her younger brother was next. So far, they’re the only two in her family with the disease.
While her daughters have been spared to date, future grandchildren might not be. “That’s why I really want to be part of this,” she says. “I’m definitely excited for the future; I think eventually this is going to be good.
“I find it pretty amazing to have this much hardware in my eye and not feel anything; my eye feels perfectly normal,” she adds.
Base URL: http://artificialretina.energy.gov
Last modified: Tuesday, May 15, 2018