S2E4: Jamika Porter – Navigating Life with Low Vision

In this episode, Hilary Stunda speaks with Jamika Porter. Jamika shares her personal story, realizing as one of six children that she couldn’t see as well as her peers, to adjusting to life as a school-aged young girl, to a college student and then graduate student, who received her Masters degree in communications.

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In this episode…

In this episode, Hilary Stunda speaks with Jamika Porter. Jamika shares her personal story, realizing as one of six children that she couldn’t see as well as her peers, to adjusting to life as a school-aged young girl, to a college student and then graduate student, who received her Masters degree in communications.

What she discovered along the way, after numerous doctors, was that the conditions she had ran in her family, which is interesting as RP is a rare genetic disorder, affecting only between 82,000 and 110,000 people in the United States. Her mother was one of nine children and four of her uncles also had some form of an eye condition as well as her grandfather and many of her cousins.

Jamika was diagnosed when she was about 15 when she saw a retina specialist. Before, she just kept getting new eyeglasses with a new prescription every year, or every six months or so. When she was 30, she started to seek treatment on her own just outside of regular eyeglasses.

Jamika says that growing up with relatives who also had eye conditions helped to prepare Jamika. Since her mother was almost totally blind, she learned how to do certain things that made life easier, like placing furniture in certain configurations.

Jamika tells Hilary how difficult it was growing up with Stargardt’s and RP and that she mainly kept it to herself as staying silent about the condition was easier than telling people what was wrong.  An eye specialist told her when she was 15 that she would probably be blind by the time she was 40.

The turning point was when, in her late 20s, she worked for a law firm that offered very good insurance. That’s when she started going back to the eye doctor.  After seeing a number of physicians, Jamika eventually found a doctor that treated her well and did not consider her a case study.

Jamika explains that she is learning to accept the Assistive Technology around her. She says that she uses her Kindle to read ebooks, and a Ruby device for everyday use. She continues, saying that to get around she uses Lyft and Uber and relies on a few friends and a sister who will come and take her places. But mostly, she takes care of herself.

What has served her the most is reaching out to friends for support when she comes up against people who don’t understand what she has and what she is going through. Learning that “everybody has some story.”

Jamika learned is that maternal grandfather probably had Macular Degeneration but considering he was born in 1890, no one knew. Recently Jamika had an aunt pass away who was 101. She recalls how she lived independently with her husband for years and that she managed because of the way she set up her house, the lighting and furniture and kitchen. She cooked and was able to take care of herself. Jamika hopes to live that way.

In the final part of this episode founder and executive director of The Support Sight Foundation, Dawn Prall speaks with Mike Wood from Vispero for the Product Spotlight.

For the past 15 years, Mike has been working with schools as well as with the senior market. Mike talks to Dawn about the Assistive Technology devices that Vispero makes for people who have low vision.

Vispero has been around since 1975. The name is the combination of two Latin words, one being Visio and the other being Spiro. Visio means the vision, and Spiro means hope. Mike tells Dawn how this is appropriate as their mission is to provide hope, determination and independence through all of their different products, whether it be hardware or software that support those with low vision.

Mike and Dawn talk about what some of the warning signs for those who think they might have low vision. Mike says it’s often something that can’t be corrected with lenses, glasses, or eye drops. If you have trouble reading even after you’ve had corrective lenses or have trouble recognizing faces or doing basic things around the house like cooking, sewing, fixing and repairing things. Or, if you start to notice that you might need more light, or are having a hard time matching colors of your clothing, feeling like the lights are dimmer in the room. Sometimes, if you’re still driving, you start noticing the problem with traffic signs or reading the signs of stores, as you driving by. These are all signs that you may have low vision and might want to go and see a low vision specialist.

Mike explains to Dawn that Vispero offers many different pieces of technology to help those with low vision get through the day. There’s the handheld video magnifier, The Ruby, that is great for reading tags at the grocery store or menus at a restaurant. But, if you’re at home, and you’re reading the newspaper, you might want a desktop magnifier like the Optelec ClearView See.

Dawn and Mike discuss some of the tools that people might benefit from when they have MacD: a handheld video magnifier, a handheld optical magnifier, a desktop video magnifier, or something that provides OCR capability which is optimal character recognition, which is basically scanning and reading so you can take text and then have it read back to you.

There are also other tools out there – software-based tools for your computer. Mike tells Dawn that for those who need to magnify what’s on their computer, or have the computer read things back to you, there is technology that can do that. All of these different products fall under different brands within the VISPERO company.

There’s Freedom Scientific, Enhanced Vision Optelec and the Paciello Group known as TPGI. Each one of these brands offer different products. Freedom Scientific, a computer software, is best known for JAWS ZoomText. They’re also known for their world-renowned handheld video magnifier called The Ruby. The Ruby comes in a couple of different sizes and functionality.

Some products also offer TTS – which is Text To Speech, which is like reading out loud. These products are good for helping people with low vision so they don’t have to strain their eyes. This, as Dawn says, is important because it’s important to remember that ‘You don’t see with your eyes, you see with your brain.’

Mike tells Dawn all one has to do to find the product differences, functionalities and price points is go to the Vispero site. From there, people can find what they need. For example, Mile says, Optelec is good if you need optical magnifiers, which are a glass lens-type of magnifier. It’s usually where people start out using a 5x, 6x, or 7x optical magnifier. The newer ones even have LED lights in them.

Mike explains that with optical magnifiers, the larger magnification you need, the smaller the lens gets. So if you have a 5x, it’s a larger lens. But then if you get up to 10 and 12x, it becomes a much smaller lens. At that point, Mike tells people that’s when you go over to those handheld video magnifiers until you graduate over to The Ruby.

Wrapping up the episode, Dawn and Mike concur that it’s all about helping people with low vision invest in devices that will help them. It’s not about regaining your sight, but performing tasks better. You see better because you’re using the device, and you’re regaining independence.

It’s about developing and delivering innovative solutions that will enable individuals with low vision to reach their full potential.

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