In this episode, Hilary Stunda speaks with Jamika Porter. Jamika shares her personal story, realizing as a child of 6 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.
Visperohas 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.
…Most people think it's night blindness. I have trouble with shadows. Even if I'm outside and I walk under a platform and it's dark, it completely changes. It temporarily blinds me for a second.
…My mom was one of nine kids. My mom, two, three, and four, of my uncles all had some form of an eye condition. My grandfather also had an eye condition and many of my cousins.
…When I was probably about 30, I started to seek treatment on my own just outside of regular eyeglasses. I can feel changes in the way I saw things.
…I did just enough to get by. Because I never wanted to explain to anybody why I just let people assume that I was lazy or didn't care about school, which wasn't true at all. But it was easier than trying to explain to people what was wrong.
…Some things just become a way of life, because like I said, my mother was almost totally blind. So, as far as household, I function as a person that couldn't see, because that's the way I was taught. Like furniture is placed in a certain way, you open up all the curtains.
…I’m now in my 40s. When I was about 28. I got a really good job. I worked for a law firm with excellent insurance. That's when I decided to go back to the eye doctor.
…I’ll be honest, I'm still working on this technology part. Some things are difficult because I do get embarrassed when I'm in the store and I can't see a barcode and I have to take out the magnifier. I have an app on my phone… but it's embarrassing. So I faked my way through some things but I'm getting much better.
…I have two really large televisions. I have some friends that, to this day, do not realize there's anything wrong with me. Because to look at me you would never know.
…With the Stargardt’s and then with the RP, it's more internal. You'll never be able to look at me and say that I can't see.
…People can be cruel. So, I made the decision I would never have to depend on anyone at a very young age. Now that I think about it, I think I did suffer from some depression. And I still do sometimes. There are little things that I miss that I could do even just five years ago, but I have trouble doing now. So I just try to move on.
…I decided that for myself I wanted to finish my bachelor's degree. So I did. Shortly thereafter, I got a master's degree. Not for anyone else. But it's mine. I worked for it. I struggled for it. I had to study twice as long and twice as hard. But I graduated with a 3.9 grade average. I was like, ‘This is mine and no one can take it.
I am one of the only ones with Stargardt's because, through research, I found it skips a generation. And what my mother realized as she got older was that her maternal grandfather probably had Stargardt's but considering he was born in like, 1890, they didn't know and thought it was just bad eyes.
…Once I was old enough to understand that it was a genetic condition and not just something that I got when I was younger. The first doctor told me because I was probably staring at the sun.
…I needed to have answers for myself. And I'm like that with most things. You can't just tell me something and I believe you. I need to know. Talking to my mom and then talking to my dad, because I had a doctor who told me that my parents are probably related. That's how I got Stargardt’s. That was a little traumatic. You just told me my parents were related. So that was another factor.
…Stargardt’s is an adolescent version of macular degeneration.
…I use a Kindle with very large font and contrast. I have since I've been working with Sage, I use the device, The Ruby, you can put it on and read it.
…I do Lyft and Uber a lot. I do have a couple of friends…but I don't really like to ask people unless I absolutely have to. I go out during the day, every week I go do my grocery shopping, I get on the bus. I don't take the subway anymore. I stopped within the past two to three years because it's really dark under there. If somebody approached me, I wouldn't be able to see them.
…That’s what made me stop riding. I tripped coming up the steps.
…I want to be more of a mentor. A couple of years ago, I worked for a program and we worked with underserved and under-resourced students. I absolutely want to be able help them going forward. It can be economically, socially or because of a disability. I want to work with children to help them move forward. But I've also found that I like working with adults I can share with. I can answer questions.
…I have one cousin, and we discovered we see the same retina specialist. We both have given him permission to discuss this in the exam.
…Oh, I hope so. That will be great. It hasn't been very long since I've been here. Still a learning and training process. But I would love to be a resource for other people or just a sounding board.
…My mother was in her 30s when she was diagnosed with Stargardt's. She went through the same thing I did where they just kept changing their glasses. So you know, he'll make the comparison. And you know, it was like he personally called me when my genetic testing came back and they realized that I wouldn't go completely blind and I thought that was so sweet. It wasn't a nurse. It wasn't an email. I was like, this is this is really nice.
…I’m in good hands…When you get people that care and they state, I don’t see the way that you see, but I want to help you, it makes a difference, as opposed to someone just saying we'll do this or do that.
…A few of the different things that I find are signs that you're starting to have low vision. Often, it's something that can't be corrected with lenses, whether it be contact lenses, glasses, something like eye drops. It might be difficulty reading a book, newspaper or magazine even after you've had corrective lenses.
… Finding that it's difficult to do basic things around the house like cooking, sewing, fixing and repairing things.
…Another key factor is if you start to notice that you might need more light, or you’re having a hard time matching colors of your clothing, feeling like the lights are dimmer in the room. Then, if you're still driving, noticing traffic signs or reading the signs of stores, as you're driving by. These are all signs that you may have low vision and might want to go and see a low vision specialist.
… It's not going to be a one tool fixes all types of situation when you have MACD. Many times people I'm working with that have MACD might have multiple different pieces of technology to get through the day.
…One of the best selling in the industry, The Ruby, is going to be really beneficial for reading the menu. But, if you're at home, and you’re reading the newspaper, you might want a desktop magnifier like the Optelec ClearView See.
…Assistive Technology devices that are out there that VISPERO makes. This is the technology that, if you have low vision, you can do things like reading; tasks that you may not be able to do as well now that you have low vision.
…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.
…When you have low vision, you need Assistive Technology. Under the VISPERO umbrella there are a couple of different brands. There's Freedom Scientific, Enhanced Vision Optelec and the Paciello Group known as TPGI.
… Three of the key things that you should focus when you have low vision are going to be magnification. Often you need magnification support. Things need to be enlarged. Lighting, you often need more lighting, so it might be as simple as having a desk lamp…
…Or changing the light bulbs to be a different brightness and contrast.
…Text to speech? So TTS is basically the exact same thing. The product offers you text to speech using the character recognition technology.
…The button placement might be in a different area, the handles shaped differently, you might have a touchscreen device instead of having tactile buttons.
…The text to speech helps because it lets you sit back and have something else read the text to you. So you can close your eyes, relax, and listen to the text out loud.
…Because with optical magnifiers, the stronger you get, the higher you need, the larger magnification that you need, the stronger the magnifier, 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
…They’re investing in devices that will help to perform tasks better. And then you do see better because you're using the device…
……and you're regaining independence. There are so many people that need something as simple as wanting to read the mail…on their own.
…Our key is to develop and deliver innovative solutions that will enable individuals that are low vision to reach their full potential.
…We have people using these to play bingo, do crossword puzzles. I've met people that use them to knit.
* Note: All listed transcript timings and wording are approximations.