S2E4: Jamika Porter – Navigating Life with Low Vision

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.

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In this episode…

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.

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.

What We Discuss in This Episode

…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.

5:46

…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.

7:01

…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.

09:04

…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.

10:53

…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.

13:32

…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.

14:48

…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.

15:00

…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.

16:40

…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.

20:40

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.

21:54

…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.

22:38

…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.

23:23

…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.

25:16

…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.

30:37

…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.

32:57

…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.

34:28

…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.

35:00

…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.

39:17

…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.

40:00

… Finding that it’s difficult to do basic things around the house like cooking, sewing, fixing and repairing things.

40:05

…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.

41:28

…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.

42:01

…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…

44:48

…Or changing the light bulbs to be a different brightness and contrast.

45:00

…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

50:00

…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.

51:18

…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.

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Transcription excerpts from this episode

* Note:

All listed transcript timings and wording are approximations.

00:03

Welcome to MyMacDLife empowered by The Support Site Foundation. This podcast is about macular degeneration and the devastating impact it has on millions of people and their families every single day, 365 days a year. Our mission is simple: to bring hope, optimism, perspective and education to our listeners. So tune in, buckle up and put your listening ears on.

 

00:31

Hi, I’m Dawn Prall, founder and executive director of The Support Sight Foundation. MyMacDLife, the podcast you’re listening to and tuning into right now, is empowered by The Support Site Foundation. We are a voice you can trust. MyMacDLife is the first podcast series about how to live your best life with macular degeneration.

 

01:01

MyMacDLife podcast is generously supported by Regeneron.

 

As early as I can remember, when I was about four or five I used to cry because I was scared of the dark. I used to grind my teeth to the point that my mother had to take me to the dentist so they could cut out the baby teeth from the adult teeth because they were too small. I was just paranoid and couldn’t see anything. When I was 10, we went to Catholic school back when they didn’t have Special Ed. They just separated you from the other kids in these little trailers. I was having trouble reading. So they sent me to the trailer with the kids that couldn’t read or had trouble reading. I started to help the other kids who could read in the class. The special education teacher sent me back to the regular reading room and said I read fine because I actually read on an eighth grade level because I have older siblings. I’ve been reading since I was four. 

 

This is when you were 5 or 6.

 

They realized that I couldn’t see. It wasn’t that I couldn’t read. I just couldn’t see. 

 

So that’s the first time that somebody actually noticed it. 

 

Until then, who told them that you were not seeing correctly? How did it progress? 

 

The nurse sent a note home saying that I needed to go to the eye doctor. They always thought it was inevitable because my mother had Stargardt’s.

 

So she kind of knew when you were born that this was a potential. Something that you could have. 

 

This was the mid 70s.  So not really.  Unfortunately, [these] conditions run in our family. But most people either have glaucoma or retinitis pigmentosa. 

 

The full diagnosis for that came in when I was about 15. 

 

And did you notice that was a separate condition? That it was the one that was dimming at night or in different shadows. How did that avail itself to you? How did you figure that out? 

 

I figured it out because you start to realize you’re a little different from the other kids. 

 

05:00

So I was uncomfortable staying out late at night. I took a lot of chances as a teenager, but I was really uncomfortable staying out at night, but I would anyway. I had trouble in class because I always had to have a specific seat. You know how some rooms had a double board. I always had to be near a brighter wall so I could see the board in front or vice versa.

 

05:29

MyMacDLife podcast is brought to you in part by Centric bank, Healthy Vision Association, Finkelstein and Associates, Novartis, Regeneron, VISPERO, and from anonymous donors.

 

05:46

So this sort of came in around high school years, the RP condition.

 

The RP, yes. Stargardts when I was about 10. It wasn’t a full diagnosis. I just kept getting different glasses every year, or every six months or so, a new eyeglass prescription. 

 

Was this with the same eye doctor? Or did you seek different specialists throughout the years and finally get to the point where you found the right doctor to give you that diagnosis?

 

When I was 10, we started at wolves eye because that’s where my mother and all of her siblings. My mom was one of nine kids. My mom, two, three, and four, of my uncles they all had some form of an eye condition. My grandfather also had an eye condition and many of my cousins. 

 

That says a lot to come from that genetic background. What have you learned over the years through all the different specialists that you’ve seen? 

 

I have to tell you for a while I was a little resentful of my two older sisters, because neither one of them have any eye problems.

 

07:01

Yeah, why me? When I was 15, that was the first time I saw a retina specialist. The general doctor realized it was beyond what he could do. That’s when I learned about the RP and they gave me the full diagnosis of Stargardt’s. 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. 

 

So things were progressively getting worse as you got older. It was like you definitely saw a marked change. 

 

Yes. 

 

And you took it upon yourself to do more research, find other specialists. How did you how did you ask for help? How did you discover these newfound coping mechanisms? 

 

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. 

 

So you grew up in an environment that was conducive to coping with this condition since you were a child? 

 

Yes. But without realizing this was what I was doing. 

 

That’s amazing. How did you end up adjusting to your school life and life with peers and teenagers? And how did you do that?

 

08:33

[In] the 10th grade, I was an excellent student. Advanced placement. Once I transferred to a larger High School in the 10th grade because I had always been in private or Catholic school. Then, in the 10th grade I went to public school and I absolutely hated it because there were so many people. I was no longer one of 12 kids or could sit in the front of the room. My last name starts with P.  Alphabetical order. I was always toward the back.

 

09:04

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.

 

09:24

MyMacDLife podcast is a national award winner of the step program for innovative macular degeneration, patient education and for demonstrating a commitment to addressing the daily needs of people with age related macular degeneration.

 

09:42

There probably came a time when you just couldn’t take that anymore and you had to explain it. You had to explain yourself fully.

 

It took a while. When I was 18 and went away to college. I still struggled a lot, but I made it through for the first…

 

10:00

A year and a half, two years. At that point, I just kind of got tired of it. I found a full time job. You know, when you’re 19, with a full time job that I realized didn’t pay much of anything. But at the time, I thought it was a lot.

 

10:15

And just went with it. To go to these different specialists is probably pretty expensive. I would assume that I mean, did you find a way to become

 

10:26

…Explore different avenues for treatments? Did you find a way to cut the cost of having to go to all these different clinics and experts? How did that work? It seems like it’d be very expensive to go to different specialists throughout your life. How does one go about incorporating that? 

 

It was for a long time, I just didn’t go.

 

10:53

I just felt like it was going to happen. When I was 15, this specialist told me that I would probably be blind by the time I was 40. That was like, oh, it’s just life. I’m gonna see what I can see and do what I can until then. So I traveled. I had fun. 

 

And now you’re in your 40s. 

 

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. 

 

How frequent is that? Are you now a case study? Because you have both of these conditions, which seems very unusual and something that could be very beneficial for molecular biological breakthroughs? 

 

Yes. now I am a case study. I had one doctor who made me a case study and I didn’t realize that’s what he was doing. Okay, I won’t say names, but I had a doctor. I would have to go every three to six months. At one point I said, I think I need to switch to a low vision doctor. This was in my early 30s. I had a drawer full of glasses. Every time I went, he gave me a new prescription. Eyeglasses are expensive, insurance or not. So I would just get new glasses. He was like, no, we’ll try this. But I realized after maybe my fourth visit with him, there were always other doctors there. 

 

Oh, interesting. 

 

Oh, what is this about? And he was saying, You know, I have a colleague that will like to examine you also. But then there would be another colleague. I was like, ‘Okay, you’re using me as a guinea pig?’ 

 

When did he finally come out and say what he’s been doing? Did he ever come clean with that? 

 

He never came clean with it. I had my fill. I had one colleague that, during the process of her exam, instead of asking me to turn left or right, because the room was dark, so I can’t see. Instead of asking me to turn left or right, she just kept snapping her fingers. Okay, turn your head now. I was like, I won’t be back anymore. 

 

Right. So you found another and you got rid of that guy? 

 

That guy’s gone. 

 

And you went and found another doctor that was more supportive and more, you know, honest about his approach.

 

Yes, I found the retina specialist. I really did like him. After a while, insurance changed and someone that I worked with recommended that I try the Shay Institute.

 

13:32

So I did. And I found a low vision doctor there and a retina specialist. 

 

So you’re now able to use all kinds of technical assistance. They have incredible magnifying displays for computers, which they probably didn’t have when you were a kid. How has it evolved from going from glasses to other products, now that you’re using tech to support your life? 

 

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. 

 

Your friends and family I’m sure have been a great support and have inspired you to not really care so much about having those things in the home. Do you have anything that you put on a television screen or anything to be able to see? 

 

I just bought a luxury television. Probably not the best solution.

 

14:48

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.

 

15:00

Oh, because, 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. 

 

I’m just so curious about when you felt when you learned that you might not be able to see in your 40s. Did you feel despair? How did you cope with that reality that you might be completely blind or heavily impaired in your 40s? 

 

Because I saw how other people treat it my mother and my grandfather, you know, and you know, like I said, a couple of my uncles. 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.

 

16:04

Hi, I’m Dawn Prall, creator of MyMacDLife. Thank you for joining us, we could not make this happen without you.

 

16:16

Do you visualize certain things in the future for yourself that you want to do hat you can see yourself doing, that you’re aiming for, and maybe through assistance with friends and family or even tools that you can achieve?

 

Yes. I’ll go back. When I was about 30 and I finally decided to start going to the doctor again.

 

16:40

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. 

 

That is incredible. And what did you get your master’s in? I have an MBA

 

17:10

With a concentration in marketing. 

 

So now you’re part of The Support Site Foundation and you’re doing some work for them and helping other people with your same condition. 

 

I help overall. I went to an event and talked to some of the people who were looking at devices. A lady said I have Macula and I said I do too…she just stared at me for a second and I said, really I do! We talked about it and I think it helped her too… 

 

17:49 

Sometimes a person who is sighted will say it’s right there, just push the button, just look. But I was really able to say to her, if you look to your left and focus, then this will help. 

 

So, throughout the years, you’ve really learned how to communicate your position more clearly. Whereas before, you might have been a little bit more timid about letting people know what your condition was. Would you say that you’re now feeling a little bit more empowered about letting people know like no, I can’t see to the left. This is what I’ve learned by having this condition. 

 

I’m getting better. I still have my moments because people can be really cruel and cruel without thinking that they’re being cruel. 

 

When you mean cruel, does this mean just taking certain things for granted? Thinking that you can see? 

 

Yes, taking certain things for granted. I’m very sensitive to anyone that has a disability. 

 

18:57

People say things like, well, you know, if you get different glasses, you’ll see better. I’m like, I can wear 20 pairs of glasses it’s not going to make a difference.

 

And they just don’t get that because they don’t understand the complexity of the condition. 

 

I was in Trader Joe’s and the cashier that I had I asked her to give me my total because I can’t see it on the screen.

 

She’s like, it’s right there. And I was like, ‘I didn’t ask you to point it out. I know where to find it. I’m just asking you for the price. And she was like, Oh, it’s right there.’

 

19:35

I was like, I’m going to walk away. But I’m going to tell you this. I said, I’m going to get someone else to ring up my groceries. So I took all my groceries to another little cubby. I said, ‘you shouldn’t assume that the person can see it. Even that I can read. You can’t make that assumption. It’s not that hard to say your groceries came to $56.12. Just be nicer to people.

 

20:00

I guess, you know, the thing that most people don’t realize that everybody has some story, would you say you have more of a compassionate perspective of those who don’t understand? Does it still bother you like it did in the past? Or have you sort of just gone, well, you know, this is how a lot of people are in the world. They just don’t understand.

 

20:24

I’ll be honest, I have my moments. I have a very good friend. She’s a reverend. We talk about this all the time. I’ll call her and I’ll say, I’m calling Reverend Lisa right now, not my friend, Lisa, because I need…

 

20:40

You to talk me through this right. And she’s like, okay. She’s like, let’s say a quick prayer, and then we’ll talk about it. I have to think about it from the other person’s point of view, because sometimes I’m just angry. Through her I have learned everybody has a story. Sometimes they really just don’t understand the simplest thing.

 

What are some of the breakthrough treatments and the wisdom that you’ve learned from some of your doctors. Have you been part of that to your family members; the ones who also suffer from certain vision conditions? Have you been able to help them? 

 

Yes. Well, 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.

 

21:46

They had the same types of eye problems. It skips a generation. So technically, it should have skipped me.

 

21:54

But how do they find that out? So when they ask you to write down your family history, when you go to the doctor, and you’re going way back, you’re able to specify exactly how many people in your family have had different eye conditions, and they were able to realize that you’re from a lineage where you are one of the ones who has Stargardt’s? 

 

Yes, because I’m nosy. And I wanted to know. 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. And I was like,

 

22:35

okay.

 

22:38

So I wanted to know. I like to read, 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.

 

23:07

He was so nonchalant about it. Your parents are related.

 

23:21

That’s how I…

 

My father was a carrier.

 

23:23

Stargardts is an adolescent version of macular degeneration. 

 

Yes.

 

When you sit down to read, do you attach a magnifying apparatus onto your book? Do you use a Kindle with a very large font? What’s your system? 

 

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 don’t like those little handheld magnifiers because you have to move your hand across the page, which is really annoying to me. I’m currently getting my own Ruby so I can read. I love to read. 

 

So it’s working out. You found a way to maneuver through life with these different editions and tools. You’re able to keep reading and keep on as you would be, but you have to stop certain things at nighttime. Obviously you can’t drive a car. Late at night.

 

They revoked my license.

 

24:44

My license was revoked years ago. And in the winter which I do not like and in the fall because I’m stuck from sunup to sundown. Anything that I do has to be from sunup to sundown, It can be depressing, especially when time changes. I have to be in

 

25:00

The house by five o’clock.

 

25:16

…So you really have a network of support. You have your friend that comes help you with the mail. Do you have someone who is a designated driver if you need to get somewhere? You’re able to pull upon this network that is supportive of you. 

 

I do Lyft and Uber a lot. I do have a couple of friends. Sometimes my sister will come and she’ll take me places, but I don’t really like to ask people unless I absolutely have to. I go out, you know, 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 it 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. 

 

Well, your stubbornness, and resilience has really been a great thing for you. I mean, to get your MBA and just keep pursuing your dreams is pretty phenomenal. A lot of people wouldn’t be able to handle both of these conditions with such a resilient, positive attitude. So that’s just incredible. 

 

Thank you. I have my days where I just hide in the house. But I try… 

 

Like everybody. 

 

Do you have goals for the future? When you are in your 50s and 60s, do you  want to be more of a mentor? How do you see yourself evolving? 

 

I do, 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.  Right, and you can tell them people make it up as they go along. 

 

You’ve really come a long way since you were a child, having to sort of fake your way through school. You know, people were treating you differently. How would you say your personality has been enhanced by this experience? 

 

To some things, I’m just numb. I’ve learned…

 

27:51

It’s probably not the best way, I just let people think what they want to think.

 

27:59

You see those movies, the people that go to all girls schools and how mean some of the girls are. It’s really like that. I realize now that people will say things. Oh, she’s so stuck up. I waved to her and she didn’t wave back. She doesn’t like to talk to people. But it wasn’t that. I couldn’t see them.

 

28:17

So I let people think what they want to think. I just try to be nice to people. I recently had a neighbor say to one of my other neighbors that I don’t like to talk to people because she waves to me from across the street. I never wave back. My neighbor told her, she can’t see you. Just say hi Jamika. And she’s like, she talks to me all the time. 

 

People are very sensitive, aren’t they? Because we’re self absorbed by nature, they think oh, it must be something I’ve done. They don’t like it when they don’t have any idea.  As for you being very self contained about your condition, that can make very interesting dynamic as you go through life because people won’t understand what you have.  It’s interesting that you have both of these conditions and that you’ve learned to maneuver through life really well with them. 

 

Thank you. It’s like one in 25,000 people or something that the doctor told me, I finally found a retina specialist that I love. He found that within Stargardt’s there are different types. The kind that I have, he said, I will most likely never go completely blind. I may get close, but I’ll still be able to see. That gave me some inner peace. 

 

So you’ll be able to see faces, however, a little bit blurry. But you’ll still be able to see features. 

 

Yes. 

 

That’s great. 

 

30:00

Now that I think about it, my mom was that way…As I remember, when I was

 

30:02

really young, I got my nose pierced. I tried to hide it because I was like she can’t see it.

 

30:10

She let me go on for about two days. And finally she came into my room. And she said, So I see that big nose ring that you have. I was like what nose ring? 

 

30:19

That’s funny.

 

30:21

And Your other relatives who also have impaired vision, do they come to you for advice? I mean, you must be sort of a symbol of resilience and positivity. And in the midst of all this…

 

30:37

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. Because I was talking to him about my family history when I first started, and I was like, oh, and I have a cousin and she fell going down the steps and broke part of her neck. And he was like, I can’t say but I have a patient that you know. So now he knows. He talks to both of us. And it has helped with some of the genetic testing.

 

Have any breakthroughs been published in any…

 

31:19

No, we should get that done. But that same cousin, she’s older than I am. She always tells me she was like, I want to be like you when I grow up. You go out. You do your own shopping…

 

31:33

I was like, yeah, I was like I do instacart. But I’m kind of funny about people touching my tomatoes, you know?

 

31:42

Well, you’ve got the bravery gene, I’ll tell you that. And I think that really has helped you through a miraculous

 

31:52

And difficult road. You’re coming out on top of it, which is really inspiring. So I just want to thank you for sharing your stories. I think having conditions like this, you can either cave in or you can learn to figure out systems, systems that allow you to achieve the things that you want to achieve. It seems that you’re achieving all of them. 

 

I’m trying. I had an aunt. She actually just passed away, she was 101. She had glaucoma and RP. I always loved her house as a kid. I never knew why. But everything, the way her lighting was placed…It was just her and her husband for years. She cooked and everything was set up. I was like, I want to be able to live like that. 

 

So at The Support Sight Foundation, are you going to gradually work your way into a role where people can find you and ask you questions. How will that evolve?

 

32:57

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. 

 

Yeah, it seems like that would be the natural fit for you. Because you have such an area of experience that not many people have in the world. It’s a very special, very specific knowledge. It’s amazing that you have found a doctor that is very good for you. It probably took a long time to get to that through trial and error meeting the right doctors. 

 

Yes.

 

So does that mean you’re going to stay close to that doctor for the rest of your life and live in that area. 

 

Absolutely. My retina specialist, the last time I was there, and I have to admit it’s been a while because of COVID. He has patients from all over the country that fly in to see him. 

 

You’re just lucky that you have him right here.

 

Yeah, usually I have to make appointments, like six to nine months in advance.

 

34:05

He has people come from all over. And he’s very sincere and wanting to help you. 

 

Does he show you some excitement about learning new things about your condition? Or is he sort of stumped as to why there isn’t a cure for it?

 

34:28

He talks about some of the progress that has been made and how things were different. 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.

 

35:00

That’s great. So you’re in good hands. 

 

I’m in good hands, I have to find a new low vision doctor. But I think I’m going to be in really good hands because I’ve talked to a couple of people and I know where to go. 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.  No…but you don’t see how I see…

 

Well, thank you so much for joining us today, MyMacDLife empowered by The Support Site Foundation. 

 

Thank you. This was great. Thank you. 

 

35:58

Hi, everyone, this is Dawn Prall. I am the founder and executive director of The Support Site Foundation. MyMacDLife is empowered by the Foundation. And this is our very special segment that we bring to you every episode, Product Spotlight.  Product Spotlight is sponsored by our wonderful friends at VISPERO. We have the fun news to do today. It’s me and Mike Wood from VISPERO.

 

Hey, Mike. 

 

Hey, Dawn, how’s it going? 

 

Great. Tell me. Tell everyone, what do you do at VISPERO? And who is VISPERO, besides the sponsor of this segment, Product Spotlight? 

 

So I think the question may be what don’t I do at VISPERO. That might be the easier question some days. I do a lot of different things at VISPERO but my main focus is the education market. So K12, Higher Ed. And really, schools is what I focus on. And I do a lot of work with the senior market. But I’ve been with VISPERO for about 15 years. So I’ve been here quite a while and know enough to be a little bit dangerous.

 

Yes. So today, we thought we’d put that extra twist on it and talk about low vision. Yes. And the products or the Assistive Technology devices that VISPERO makes, that people who have low vision, need to know more about. Because the goal of MyMacDLife is to be a resource for people who are living life with low vision due to macular degeneration. So low vision, not a widely known condition. So tell us what low vision means to you, to the company. 

 

Absolutely. To give you a little history, VISPERO, which is spelled V.I.S.P.E.R.O is actually the combination of two Latin words, one being Visio and the other being Spiro. Visio means the vision, and Spiro means hope. So our driven, you know, message and our mission is to provide hope, determination and independence through all of our different products, whether it be hardware or software that support those that are low vision. We’ve been around quite a while, really the leading industry, you know, back since 1975. We’ve merged together many brands over the years. But we’ve all been around since 1975. 

 

So low vision…

 

38:43

when you talk about and I think it’s important for people to know, we get a lot of

 

38:48

…Our constituents, a lot of people asking us about, you know, that I’ve just been diagnosed with MACD, and I don’t know what to do. I’ve been told there’s nothing they can do about it. And I’m scared. One of the main roles that the foundation plays and certainly this podcast, is back to your education comment, is so people learn more about living with low vision. So

 

39:17

if I have low vision, my retina doc is not going to say that to me. My ophthalmologist might not say that to me. So how do I know when I have it? 

 

So you know, one of the things that I find, or 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. So you’ve gone to your eye doctor and you have glasses or contacts, recognizing faces of family and friends. Finding that it’s difficult to

 

40:00

Do basic things around the house like cooking, sewing, fixing and repairing things.

 

40:05

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, you know, 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.

 

So here’s the thing. And you know, here’s the thing, when you have MACD, you just hit all the checkboxes, all of those things happen, whether you’re diagnosed with it yet or not. I would say or people out there listening, that when you’re diagnosed with macular degeneration, you have low vision. 

 

Oh, absolutely. And you might just not be as severe yet. I think there are stages. Yep, there are definitely stages. And, one of the things that I like to tell people is 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. 

 

So no, because you can’t cut a steak with a butter knife. Everybody knows you need the right tool when you golf, you don’t use a putter to you know, hit your tee shot. 

 

No, they don’t!

 

41:28

So, you might use a handheld video magnifier like The Ruby when you go into the grocery store, and read tags at the grocery store, or maybe you’re going to a restaurant, and you know that the restaurant is low light, right? They’re setting the ambiance and the mood. But you want to have this handheld video magnifier.  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.

 

42:01

That’s going to be more of a stationary device that you bring the materials to, as opposed to bringing the device to the materials. 

 

Right. And I’m just going to insert this because like you mentioned, these are technology Assistive Technology devices that are out there that VISPERO makes. And 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. 

 

So 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. Then there’s also some other tools out there- software based for your computer. If you need to magnify what’s on your computer, or have the computer read things back to you, there’s technology out there that will do that as well. All of these different products fall under different brands within the VISPERO company. 

 

What are those Mike? It’s important for people to understand. I love that you’re giving this kind of general overview of the way the Assistive Technology industry works. 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. So each one of these brands offer some different products. So for example, Freedom Scientific is best known for JAWS ZoomText. That’s computer software. They’re also known for their world-renowned handheld video magnifier called The Ruby. The Ruby comes in a couple of different flavors as far as sizes and functionality. 

 

What category is that in when you said magnifiers? 

 

The Ruby would fall in a handheld video magnifier category. So these are something that are electronic, and three of the key things that you should focus when you have low vision are going to be magnification. Oftentimes 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…

 

44:48

…Or changing the light bulbs to be a different brightness and contrast. These handheld video magnifiers offer all of those benefits. 

 

Well, actually all the products have that.  

 

45:00

When we tell people where do we start? Every ne of the Assistive Technology products has those features, right? And some have what do you call it OCR? Or is it what’s TTS.

 

Text to speech? 

 

So TTS is basically the exact same thing. So the product offers you text to speech using the character recognition technology. 

 

So it’s like reading aloud. Right? 

 

Correct. A lot of people like that, because you may have a newspaper or a magazine that you put under a device. And you know, the other thing is, if you have Mac D, the more you’re using your eyes, you’re straining your eyes throughout the day. So you’ll start to get eye fatigue.

 

You’re tired

 

Your eyes are getting tired. You know, I’m sure many of you listening in here have had eye headaches before. You get that kind of strain in your eye. And 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. 

 

Plus, we always tell people and I think it’s important in this segment to say, ‘You don’t see with your eyes, you see with your brain.’ And when you struggle with low vision. Let’s face it, we’re all using our sight…So there’s Freedom Scientific, correct. Enhanced Vision. Optelec. And The Paciala Grip. 

 

So what’s the difference between all of these? Because they all have the features. What’s the difference between those brands So we can help people understand? 

 

The best spot to look and see the differences would be at VISPERO.com. And from there, you can be linked to all of those brand websites. It really depends on the task you’re doing. You know, Optelec is really good if you’re looking at optical magnifiers.

 

What is optical magnifier?

 

An optical magnifier is the Sherlock Holmes style magnifier. It’s going to be a glass lens. So a lens-type of magnifier. And you know, that’s usually where people start out. They might have a 5x 6x 7x optical magnifier. So that’s one power magnifier. The newer ones have LED lights in them. If you have that, you have that magnification. 

 

You’re going to need more, because we all know with MACD, and I’m the MACD queen, that it’s progressive. 

 

So you have one of those Optelec 5 x’s and it’s not working for you. I mean, it’s got to be hard to read the newspaper with that. If it’s not working, because your eyes are changing, then you graduate up to an electronic version with what you mentioned before, right? The desktop. That kind of thing. Size, right. 

 

I’m glad you mentioned size, 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…At that point, I tell people that’s when you go over to those handheld video magnifiers until you graduate over to The Ruby. 

 

You guys are going to talk about different products but I think it’s important for people to know they have choices. Is that really what you’re saying? 

 

It is. Freedom Scientific has the Ruby and X (?) has vision has pebble and Optelec has the compact. And it is nice to have options.

 

There are options, but they’re all basically the same. 

 

So is there different colors? Maybe?

 

Different functionality, the button placement might be in a different area, the handles shaped differently, you might have a touchscreen device instead of having tactile buttons.

 

Okay, is there a difference in price? I know we don’t really talk about that much. But I mean, certainly people can go to the VISPERO.com and find, but is there a difference in price in those? 

 

You know what there is a little bit of a difference between some of them, but it really depends on the size of the screen that you’re doing. So if you’re starting out with a 4.3 inch screen, for example, that’s going to be less expensive than if you go up to a seven inch screen or to a 10 inch screen. So again, the larger the screen, the larger the price.

 

Between Freedom Scientific, Optelec and the other was hands vision…is there a difference between those? Do they

 

50:00

Have different prices?

 

They’re pretty similar. I would say.

 

I think that’s good for people to know because, let’s face it, they’re investing in their independence. They’re investing in devices that that will help them. We always say this, not to regain your sight, but 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. To be able to read it and not have to ask their husband, wife, or whomever they live with to read something to them. 

 

So I love what you said. So we’re going to wind up this low vision, I love that you, VISPERO, is an industry leader in low vision, Assistive Technology devices. The role that the foundation in service of our patient education that we partner with you with VISPERO. Thank you, again, for your for your support. We couldn’t do without you. But to partner together so that more and more people understand low vision.

 

51:18

Absolutely. So our key is to develop and deliver innovative solutions that will enable individuals that are low vision to reach their full potential. So that depends on what you want. What is your full potential? If you want to get an education, obtain employment, succeed in your professional career, or live independently, you name it.

 

See your grandkids? 

 

Yes, and that’s the thing. It’s just living your day to day life sometimes, and it’s phenomenal. And these products help do that. I mean, we have people using these to play bingo, do crossword puzzles. I’ve met people that use them to knit. It’s amazing. We had a veteran, we do a lot of work with the VA hospitals. And we had a veteran that was doing fly fishing lures under his desktop, CCTV, you know, so he had a big desktop unit with a 22 inch monitor. He was able to enlarge the small little lord, you know, that he was using for fishing and tie themselves. So it depends on what you want to do. I’m sure we have the product that meets those needs to help you. 

 

Thank you. 

 

You’re welcome. Thank you for having me here today Dawn. 

 

You bet. Come back. 

 

Definitely. Well, I’m like the Terminator.

 

52:40

Thanks for being with us on MyMacDLife, the podcast with a vision to bring hope, optimism, perspective and education to our listeners. For more information and many great incredible resources, visit MyMacDLife.This program is supported by amazing listeners like you. Please consider a donation to keep our mission moving forward. Remember to subscribe to this podcast on iTunes or wherever you get your podcasts. Until next time, keep living with hope.

 

53:24

MyMacDLife podcast is generously supported by Regeneron