Transcription excerpts from this episode

00:42*
You know who the guest is today. A very special guest. incredible person, smart, genius, visionary. Today’s guest on today’s show, Dawn…

00:57
I really didn’t look at the list. Shawn, who is it?

01:00
It’s Dawn Prall… I think people will get a lot out of your interview, talking about your story, how you founded The SupportSight Foundation… And of course, our buddies from Vispero will be stopping by to talk about some incredible technology almost like science fiction. But it’s today that people can use to really help with their macular degeneration.

01:29
Let’s roll. Shawn, this is that time in this episode or the show where we talk about what we’ve been thinking about. And you know, it’s our favorite time together, right?

01:50
Sure! This is a topic that our audience of people out there think a lot about, and that is eating food. I was thinking about this the other day that diet and healthy eating is really critical to living with macular degeneration—there are all kinds of foods that are eye healthy.

02:17
And I think that’s something that people often don’t think about. So what are some things people should have more in their nutritional plan for eye health?

02:30
Well, I think the kind of a general rule is heart healthy is eye healthy.

02:30
Ah, that’s a good one. Yeah.

02:31

Yeah. It keeps it simple. And the other rule that’s easy to follow is eat the rainbow.

02:47
Eat rainbows. That sounds fantastic. It almost sounds like a Skittles commercial.

02:51
Yeah, it does. So what I mean by that is, your plate or your bowl, or whatever you’re eating out of should be full of color. And that includes lots of dark leafy green veggies like collard greens, kale, cucumbers, it also should have oranges. That’s apricots, cantaloupe that’s got lots of beta carotene, strawberries.

03:18
But what a great tool. I mean, it’s so simple just to say. I mean, that makes it so much easier than having to make it complicated. So I like that idea.

03:27
Yeah, and you know, a lot of people know it’s just a well-known fact now about omega-3s and fish oil. You know, that’s essential to eye health, particularly if you have dry macular degeneration. And really the only thing you can do right now because there’s no treatments out there. And of course, 80-85% of people have dry MacD. Really the only thing you can do is of course not smoke and exercise, healthy lifestyle and healthy diets.

So, those omega-3s like not just the supplements, but also the kind of the fatty fish. You know, a lot of times people say to me, ‘Well I eat tilapia a lot.’ Well, tilapia is good for you, because it’s a fish. But it’s not as fatty like, say, salmon or herring. So, you know, if you integrate that into your diet two or three times a week, it’s really good for your macular degeneration and for your eyes and your overall health.

04:29
So a question that I would immediately have is where do people go to find out about right kind of diet to follow for healthy vision?

04:36
Well, there’s all kinds of resources out there. And, of course, if you go to a nutritionist or a dietitian or you live in a CCRC—a continuing care retirement community—you can talk to the staff there and look at the menu. Or you can go online. You can go to NTI, the National Eye Institute, or you can also of course, go to The SupportSight Foundation. We’ve got a lot of handouts and fact sheets that you can print out. And we even have a healthy vision shopping list. That’s pretty handy.

05:08
That’s a great idea. Yeah, there’s no reason why you can’t enjoy your holidays, but also take care of your eyes at the same time.

05:14
Absolutely. And you can do that year-round. And it’s good. These are good habits to get into, right?

05:19
Absolutely. So as many of our listeners know, MyMacDLife is powered by The SupportSight Foundation. But I think what’s important for our listeners to also understand is The SupportSight Foundation has a founder and an executive director. And so I thought people would like to know a lot more about The SupportSight Foundation and what it’s all about.

So today, I have the privilege, the pleasure, to interview my co-host, Dawn Prall, who is also the executive director and the founder of The SupportSight Foundation. So Dawn—for our listeners who don’t know—tell folks, what is The SupportSight Foundation? And what’s it all about?

06:05
Hi, Shawn.

06:06
It’s always good to be with you. Good to be with you my co-host and now interviewee, which, by the way, I know had to twist your arm to do this. But this is really important on for people to understand about you. And about The SupportSight Foundation.

06:20
Thank you. The SupportSight Foundation, or TSSF is a 501(c )(3) public charity, whose mission is to save sight for millions of people who suffer from macular degeneration. That’s kind of it in a nutshell. And we do that through? Well, in a couple ways. We do that through patient education programs. We accomplish our mission through patient advocacy. And we also fund critical research to find new treatments and eventually a cure for MacD.

We are laser-focused on macular degeneration. We don’t do anything else. We don’t do glaucoma; we don’t do diabetic retinopathy. Not that those diseases of the eye are not really, really important. But other organizations focus on those. And that’s what makes us different, we are solely focused—we have a track record of being effective. We have a constituency. By and large, the majority of them either have macular degeneration; have a loved one who had macular degeneration; or are in some way connected to the disease, because it is 1-in-4 people over the age of 65 have some degree of or some stage of macular degeneration. So it’s that huge. And it’s that real.

08:05
And I guess I was surprised when I first got into this topic about how many people are affected. We’re talking about millions of people and their families. I think it’s much larger than a lot of people realize

08:20
It is. I mean, my mantra has always been, Shawn, that this disease is bigger than all of us. And for The SupportSight Foundation, you know, we don’t profess to be the end-all, be-all. We are smarter than that. We know that it’s going to take a village, as they say. Or, you know, a lot more than what we can do. But we are unabashed in our capacity to lead the way, because somebody has to. And we’re very boutique about it.

There’s lots of other organizations out there. Those are my peers, quite frankly. And, you know, I talk with all of them, and they talk with me. I mean, it’s their relationships out there that are really important in the bigger picture. And there’s conflict out there in the data, right. You know, some people might say, ‘Oh, I saw there’s only 10 million people who have macular degeneration or 6 million.’ Well, my response to that is that this is also an underreported disease. Yeah, it’s a silent disease, we say, because you’d be amazed at how many people—and they’ve told me this, and I witnessed it over the last 11 or 12 years, I’ve been hard at work doing this—who tell me you know, ‘I don’t want to tell people I can’t see because they might think less of me or that might mean that I have to ask for help.’ And I guess my response to the numbers is: Does it matter if it’s 10 million or 6 million? It’s still devastating to each individual life.

10:04
You know, that’s right, no matter what the number is, even if it were one, it would matter. Because you could make a difference in one person’s life, but we’re talking in the millions that it certainly is affecting, so many people and their families. So I guess my question that I always think about when we talk about The SupportSight Foundation…Your being the executive director and the founder, you have this vision which I always really have admired. So I guess the question is, what life path led you to this? What, what inspired you? Or what led you to say, ‘I’m going to do something about this.’ What was the spark that led to that?

10:41
Oh, well, first of all, thanks for the question. I appreciate your compliments, too. They mean, a lot. I wouldn’t call it a spark; I would call it a raging forest fire. Because I tend to not do anything unless it’s a raging forest fire.

10:58
There’s a good analogy. But it does say a lot about your passion. You know, so where does passion come from, for MacD and for The SupportSight Foundation?

11:11
Well, most of my career for decades was spent in healthcare, and also some in social services. So I’ve always been about, I mean, it’s in my DNA to help people. It’s in my DNA to help make the world a better place. And I don’t say that in a way that is Pollyanna. I mean, I’m sincere about that. And most everyone who knows me knows that to be true. So you know that 10-12 years ago, I got a phone call out of the clear blue sky, literally when I was walking along the beach in August. And it was an opportunity to run the Macula Vision Research Foundation at the time—which is kind of the predecessor to The SupportSight Foundation.

Well, there were two founders, actually co-founders, Karen Lotman, and her husband the late Herbert Lotman—or Herbie, as they called him—and he called me out of the clear blue to ask me if I would be interested in becoming the executive director. Fast forward, obviously, I took him up on the offer for lots of incredible and appropriate reasons, and really felt like, even though I didn’t know much about the disease at the time, I knew this was an offer I couldn’t refuse. And so I quickly surrounded myself with scientists, researchers, people who taught me what I know. And as a quick study, the details matter. The facts matter, of course. And presenting to people in a way that was scientific, even though I’m not a scientist, was important to me. But what really happened along that part of the journey, was I started to meet people. And at the time, it was face to face, there was no COVID. I started to meet people all over the country who live with macular degeneration. And that was profound.

13:23
You saw the devastating impact of this disease.

13:23
Right.

13:24
Wow.

13:25
It actually changed my life. Because I started to think then about, what do you do in the meantime. And so we created a program, the SupportSight Patient Education Advocacy Program, which was already there when I took the job, but we changed the model. And we shifted to what we call ‘in the meantime.’ So if I’m going to live with this disease, and it’s going to slowly rob me of my precious vision, how do I continue to live in a way that’s independent? And that was it. That’s what did it for me. I was hooked.

14:12
You’re hooked. And it turned from a spark into a raging forest fire.

14:18
And then a quote from a person that has a lot of vision in more ways than one: ‘As sight disappears, so does a person’s connection to the world.’ You may recognize that quote. You said that, so…tell our listeners a little bit more about that quote. Because when I read it, I was just like, wow, that’s so true. But I just wondered what that means to you. I mean, I know what it means to me. But what does it mean to you?

14:49
Well, as a sighted person, and by the way, I’m very blessed with that. For now, anyway. You never know, life changes. That’s how it was described to me… over the course of time, the hundreds of people that I would come in contact with, whether it was on the phone or in emails or face to face. And I would hear people’s stories, you know, on a daily basis, and I’m talking about, I mean, I still do that. That’s my day-in-the-life, you know, as the founder and executive director of The SupportSight Foundation, and it’s my honor and privilege to be in those conversations, because they’re really special, each and every one of them. But that was kind of my outcome… based on all those conversations.

15:44
That when somebody loses their sight, they lose their connection to the world, and to try to help them. And that impact of losing the connection, to try to re-establish a way… to connect with the world in different ways, but yet, still connect.

15:59
That’s right. And that’s really in a nutshell the premise of our mission.

16:05
So for those listening, a couple questions. What kind of research is The SupportSight Foundation doing right now that people might find exciting? And, you know we often talk on this program, MyMacDLife about hope—what kind of research are you currently involved with that might give people reason to have hope for either a treatment or a cure for MacD?

16:31
Well, not being a researcher, I need to, you know, mention that to the audience that I’m not a medical doctor. I’m not a scientist. I’m a businesswoman. But I know a lot about it. And we’re really, really excited about the latest research project that we are funding, and it’s related to gene replacement therapy.

16:56
Wow.

16:57
Yep. There’s a lot of buzz out there about the two ways that… most scientists, and doctors do believe is the pathway to a cure or a significantly different treatment. Because there’s not a treatment right now for dry MacD, by the way, other than vitamins and exercise and kind of lifestyle and environmental factors. So, there’s a lot of buzz about gene replacement therapy, and also stem cell therapy. The latest project that The SupportSight Foundation funded—and we just announced it and we’re really psyched about it—is a genetic study.

I don’t want to get too involved in the description of the project. It is on the website, supportsight.org. And feel free to visit that and you’ll learn more about the research that we’re involved in. We’re also looking at funding some low-vision research. There are some projects on the table right now that our experts on our board are considering, so stay tuned. You’ll hear more about those too.

18:13
What I love about what you just said is, you know, there are some foundations or charities that talk about it, but are they doing it? And what I love—the fact that I just want to emphasize—that you’re actually funding research. You’re actually funding the research right now So that’s incredible that you’re actually funding the research to move this forward.

So, people could go to the site supportsight.org to learn more about it. And two last questions, people that are listening and saying ‘Wow, I love this. This is fascinating. This is something I really want to get involved with because either I have MacD,’ or ‘I have a friend that has MacD,’ or ‘I just want to help people. How can people get more involved with our mission?’

18:59
Well, the best way to get involved is to go, as you said, to supportsight.org or call us at our 800 number.

19:17
That’s right on the site.

19:17
That’s right. Yep. And get involved by making a donation. It all adds up. No size, no donation is too small or too big. We are a public charity and 501(c )(3), so we rely on the support of our listeners and others to move the needle on the research and to continue to feed programming that people out there so desperately need. We are a credible resource for really accurate patient information, caregiver information. And also MyMacDLife is not only a podcast, but my vision for this program is to also create a place where people can share their stories. And I know later on in the show, we’re going to talk more about that.

20:15
That’s right. So a question you may be a little surprised by or maybe humbled by a little bit. Do you want to look back on The SupportSight Foundation and say this was a really important part of Dawn Prall’s legacy?

20:37
Absolutely. I mean, I don’t really think about that a lot. Thank you. I just know that my hope for people, my wish is that whatever little tiny bit I can do, as founder and executive director of The SupportSight Foundation, and formerly Macula Vision Research Foundation. Any little bit that I can do, and that the organization can do along with the board and the whole cast of characters and like yourself and others, to make a difference for people who are losing their precious vision. I just hope that, to borrow the phrase I used earlier, that we can move that needle. Because if we stay focused on it, like we are and we will, I know we can make a difference. And I want to be part of that. I want that to happen.

21:34
I want to thank you for your time today, number one. Number two, I want to thank you, for the millions of people—you’re having an impact on millions of people’s lives. I want to thank you for that. And I also want to thank you for letting me be part of this, because I’m very honored and privileged to be part of making a difference in people’s lives by talking about and educating and research and information about MacD, because you’re changing lives. And we really appreciate that.

22:01
Thank you, Shawn. That means a lot.

22:10
Hey, Christine Pedi here coming to you from my tiny little studio apartment, in Hell’s Kitchen, New York City. So apologies for the noise that comes through the window whenever it feels like it. I am here to just share with you my adventures in having a visually challenged life.

It’s my transition time. I would say I am losing vision in my remaining good eye. So, I am starting to learn about different things that are going to be incorporated into my life. But I do have some stories from my previous experiences with visual challenges, specifically some of the surgeries I’ve had. I think the first big surgery I had was a detached retina. And I was doing the play, Noises Off, in community theater. And I played the woman who always lost her contact lenses. So there I was, on the stage, squinting—was a very profound acting choice I made by squinting when my contact lenses were falling out. And there I was doing my comic squinting. And I noticed there was a spot in my eye. And I thought, well, what’s that? And it got darker and bigger, and darker and bigger, and bigger and darker by the end of the play.

I was concerned so the next day I went to the doctor, and she looked at my test results. And she came in in a total sweat hyperventilating and she said, ‘I’m okay. You have a detached retina.’ And I went, a detached retina? All right. Well, I’ve heard of that. So at least we can give this a name. I have a show tonight, another performance of Noises Off. So how soon can we take care of this? Then she went, ‘No. Oh, no. No show tonight. You have to go into the city right now. You have to have surgery.’

24:00
I did my best Lucy Ricardo. My parents drove me down to the city. And you know you’re resilient when you’re in your 28-year-old bubble, rubbery and elastic and not just on the outside. But you know, emotionally too, and I had every reason to believe that everything would be fine. The doctor saw me, and he said that I had to have surgery and they would do it. The next morning, I was going right away into the hospital.

I remember I was in the hospital and the night before the surgery. They bandaged both eyes. I can’t remember why they did it. Something about resting them. I don’t know. But this was in the 80s. Things were different then. They bandaged both eyes, and I was alone in my hotel room. Hardly my hospital room, and I was okay about being half blind in the eye and this big black veil descending down upon me that hadn’t bothered me all day. I had confidence and faith, but it was lying in the bed bandaged. That made me feel like I’m alone. Really bad. Betty Davis movie. Kids, ask your parents who that is, or Google her. And so they’re sad. And if it wasn’t so funny, I would have laughed because it was sad. It was very sad and lonely. And it was dark, and it got darker. And it’s just a really bad melodrama. The melodrama of it made me laugh, and the surgery went fine.

But p.s, it was six days in the hospital. I mean, nowadays, come on. Nowadays, you could have a baby, you can have an internal organ removed and a toe taken off, and you’d still be home in time for Letterman—or no, that’s how old I am, for The Tonight Show. I’ve been watching Letterman. So I said Letterman. But anyway, is it just a different time.

And you know, if nothing else, when you consider that you, you just have to be grateful if you’re suffering from any of these things nowadays, and how things have moved so rapidly. So very rapidly. I met a woman who was a nurse… who told me long time ago, even before my detached retina, they used to have to lie in bed with sandbags on either side of your head, and make sure you didn’t move. And, you know, it evolved to the time when I had my detached retina. So it was better when I had it.

And it’s so much better now, because I’ve had subsequent detached retinas and I’m here to tell you how much easier and quicker and probably safer. And so there’s always something to be grateful for, particularly when it comes to these amazing people in medicine and in research who come up with this stuff.

And the other surgery I want to tell you about was after that, years later, because my eyes are not equal. I have a dominant eye and a weaker eye. I have an eye turn, and so I went to have a Strabismus surgery to just amend the eye turn of it. And I went to Dr. Renee Richards, who is a very famous for being one of the first transgender transexuals having one of the first gender surgeries, and I went in to talk to her. And I was going, ‘Oh, interesting hairdo. Nice sweater set, cute string of pearls.’

27:18
But, you know,

27:19
I mean, I was like looking over her outfit. Okay, and judging her on her outfit, because I knew she was once a man. I was just wondering, you know, from a man’s perspective, or somebody who was once a man, how did she choose to express herself now that she was finally a woman? And I thought very conservatively, okay, but I thought no nail polish, really? I mean, why not? And then I went, ‘Wait a minute. Those nails are really short, too. Why don’t you have any? Oh, my God. She’s a surgeon. She’s gonna cut me open. Wait a minute, what are those hands look like? What are those nails look like? Are they clean? Are they nimble? What are they doing? How is she picking up the pencil? Does she have secure hands?’

You know, suddenly, I totally just learned to refocus on that which was important. And then it reminded me of a doctor that I met somewhere else who was also a surgeon. And I thought, ‘Wait a minute, he had really big hokey hands, but he cut me open properly.’

So anyway, those are just two of my ridiculous surgery stories. And as we move forward, we’re going to talk about all sorts of silly things, important things, emotional things, angry things, you name it. I’m feeling them all, as I transition into a life filled with many more visual challenges. So I will see you next time. For my little studio apartment here in New York City. This is Christine Pedi.

30:35
Today, the assistive technology folks at Vispero are going to be talking about the RUBY® Family.

30:53
What does the RUBY® Family of products do, from our fine sponsors at Vispero, Dawn?

30:59
Well, they’re in a category called portable electronic magnifiers. So there are like four models or so. And you know, a lot of the folks that I talked to have these, and they use them for everyday tasks. You know, they’re the next step above a regular basic, old-fashioned magnifying glass.

31:21
Wow, that’s amazing.

31:22
So I guess that tool would be really helpful for things like reading your mail or looking at pictures, right?

31:28
Well, yeah, you’re exactly right. Like, you turn them on, they charge up kind of like your smartphone. So they’re easy to use. And they have magnification, contrast, everything. So it makes the simple tasks not so cumbersome.

31:45
That’s phenomenal. I can’t wait to hear more about it.

31:47
Yeah, I think folks are going to learn a lot from the RUBY® family, so to speak. There we go.

31:57
All right. Well, good afternoon. My name is Bill Kilroy. I’m Vispero’s Senior Sales Director for the Northeast, and I’m joined by my colleague, Mike Woods, Strategic Accounts Manager for Education for Vispero. Hey, everybody, Mike and I are very pleased to be on this podcast, MyMacDLife, and we hope to tell you a little bit more about our organization and the types of tools we produce.

Vispero is the world’s largest assistive technology for the visually impaired. Our field of specialty is assistive technology in our world for Vispero. That means serving people with our products who are blind or low vision. Throughout this podcast, we hope to highlight key products in our line that can enhance people’s lives. And we look forward to speaking with you.

Today’s featured product is actually a family of products that we’re going to highlight. It’s called the RUBY® and the RUBY® is a group of four different handheld video magnifiers. The reason we’re very excited to talk a little bit about the RUBY® is it is a Freedom Scientific product that when it debuted, it was by far and away an industry changer.

It was a device that came out and our 4.3-inch unit, or RUBY® classic—as we refer to it—came out. It was unique in that it could be in hand. But it was also color coded in its controls. So you had red, yellow, green, blue buttons that were also tactile, so that if you were going to raise, magnification, it could increase or decrease the magnification by knowing the color or by knowing the feel of that particular button.

The other thing in the class of RUBY® is that it can be used as a stand magnifier, where it’s just sitting on the table or the work surface in front of you. Or three of the four units have a hand-held grip, so that you can hold it up and you can basically move it up like a regular magnifying glass.

To go through the line, there is the RUBY® classic, which has a 4.3-inch screen; and the RUBY® HD, which is a 4.3-inch screen, but also is an HD, high-definition camera. There’s our most popular device, which is the 5-inch RUBY® XL HD, and the RUBY® 7, a 7-inch unit. And it’s the only unit that does not have a handle, you can still hold this one up.

The unique part of the RUBY® 7 is that its camera is actually not fixed in its position; it can actually rotate. So I can be looking at something that’s on my work surface, or I can rotate it and look at myself again. If I’m buttoning a button, tying a tie, putting on makeup, I can get a little personal viewing. I can also rotate that camera to see things in front of me, or basically behind me gives you a little bit of distance mode capabilities—what I call McDonald’s mode, where I can feel comfortable walking into a McDonald’s standing at the counter that is about, I don’t know, 10 to 12 feet away, look up at the menu with my RUBY® 7, and be able to read the information on that menu and then convey my order to the attendant. They’re like other magnification devices, you know, range of magnifications, anywhere from just under 1x magnification to on the seven. I think we go as high as 22x, as well as a range of video enhancement modes for color combinations. And also having the line markers and masking capabilities. Mike, I’m rambling on about these RUBY®s, but tell me how it’s used with the kids in education and with what you see out in the field.

35:43
Yeah, you know, the RUBY®s are, as you said, tried and true products, the XL LHD being the best seller. I love and everyone that uses it loves the fact that it sits at a nice ergonomic level. So when you do have it sitting on a flat surface, such as a book, or a brochure or something like that, it’s a nice angle, so you’re not leaning over it and kind of stretching your neck or arching your back. And that makes it really nice.

Those guidelines and masking that you mentioned are huge. People love that for tracking. And especially in the education market, it keeps you on track on your line as you’re reading a book. And on the RUBY® 7, I find a lot of people like the fact that it has an HDMI input jack, but it actually does HDMI output. So it sends the video—whatever you’re seeing on that RUBY® 7—to whatever device you plug the other end of the HDMI cable into. So I’ve had customers that have plugged that into a 65-inch television. And they’re able to view what they see on the RUBY® on this giant 65-inch screen. So you know, they’re very versatile, portable—that XL HD fits in a shirt pocket really nicely. And yeah, they’re just great products.

36:51
Well, those are the RUBY®s. What I should also point out, and you know the RUBY®s are from the Freedom Scientific division, we have two other divisions: Enhanced Vision and Optelec that manufacture handheld magnifiers as well. Enhanced Vision does the Pebble line as well as the Amigos. And we’ve highlighted in an earlier session the Compacts from Optelec. So, we’ve got a nice consumer line of products to all the sparrow companies. And to learn more about the RUBY® line or any of the Vispero low-vision devices that we’ve been talking about on MyMacDLife, visit our website at www.vispero.com, Or call one of our customer service representatives at 1-800-444-4443. They can learn a little bit about what you need and connect you with a local resource where you might be able to test these devices in your home. So thank you for tuning in. And until the next podcast, have a great day.

37:54
Here’s another practical tip for living with macular degeneration: decrease glare. And I’m sure you’re aware of this—you probably live it every day—but glare can really further reduce your vision and can cause eye fatigue. So, first of all, decrease the glare from lighting from windows and from the sun. And as you know, amber or yellow tints because those tinted glasses can really cut the glare and enhance contrast. So there’s a couple things to think about to make it easier for your daily life.

You’re listening to MyMacDLife and powered by The SupportSight Foundation, and The SupportSight Foundation is powered by a board. This is a board of talented and dedicated people who are committed and passionate about the mission of the foundation. And the mission is to save the sight of millions of people and their families who suffer from MacD.

We’d like you to learn more about the people who really are dedicated and committed to the mission of the foundation. And we’re committed to saving the sight of Native people and their families who suffer from MacD. Let’s have a listen.

39:03
Hi, John. First of all, it’s wonderful to be here with you today on MyMacDLife. And I just want to start by telling everyone who’s listening and hopefully it’s the whole wide world that we are very grateful—we being The SupportSight Foundation, because the MyMacDLife podcast is powered by The SupportSight Foundation. And we are extremely grateful to have you as a board member. And thank you so much for your leadership and for your commitment and dedication to the mission of the foundation and to helping the millions of people out there who are living every day with macular degeneration. Just want to start with that and thank you for joining us today.

39:52
I appreciate your kind words, Dawn, and look forward to continuing to support The SupportSight Foundation. And moving into the future, hopefully work with you to do very good things.

40:07
Great. Thanks. So without further ado, how about if we dive right in. I think today, it would be a good thing for folks who are listening to get to know your story. So powerful a story, and it’s best told to others by you. So where I think would be great for you to start is explain to the listeners, you’re visually impaired, and how your life has dramatically changed when you and your family got the news that you were diagnosed with retinitis pigmentosa. And while that’s not macular degeneration, which is the focus of The SupportSight Foundation, and certainly the topic here, it’s also a disease of the retina.

So there are many, many similarities in terms of people who live with the vision loss. So why don’t you start from the top, so to speak, and tell folks about what it was like to get the news from the doctor.

41:15
Okay, thanks, Dawn. Let me start by saying, when I deal with older folks today, I convey to them that the condition I have, retinitis pigmentosa, abbreviated RP, is very similar to macular degeneration in terms of the impact in the way it progresses. So RP is an inherited disease. It’s passed from mother to son, and the male child has a 50% chance of getting the disease—at least the genetics that are involved in the family I have. So I have one brother that does not have it. I have. And my youngest brother has the same condition. And I have a sister, and of course, it does not pass to girls.

So I was unusual, in that I was diagnosed at an early age at the Massachusetts Eye and Ear Institute, like about six years old, because I had some troubles seeing at night. So my mother took me there for an eye exam. And it was a specialty clinic in the Boston area. So I was diagnosed at six years old. And this was back in the 50s. And back then you can imagine, little was known about RP and the limitations it had. So I was like a specimen where I had all kinds of doctors stick they’re light in my eyes and making all kinds of comments. And the depressing thing was here, I was a kind of a six-year-old kid. And the doctors would say, ‘Oh, you’re going to be blind someday. Yeah, so you need to compensate for that. Or you need to figure out what to do.’ But you know, at six years old, what do you do? You know, what do you think?

43:32
So, you’re supposed to be flying kite, and then doing and playing jacks and all those things that in the 50s that kids did right marbles with your friends. Right?

43:43
And from my perspective, I had pretty decent central vision. I had very little, at the onset, night vision and limited peripheral vision. But I sort of didn’t let that stop me. So I proceeded through grade school, high school, I played sports. In fact, at one point I was discouraged from playing sports in particular football because of my vision, in the fear that maybe you get hurt. But I went through grad school and high school kind of pretending that I could see no one well. Although my close friends knew that I did have an eye condition. And as teenagers, you know how sensitive teenagers are to anything and everything. It was kind of an issue.

44:39
Were they mean to you? Did they pick on you?

44:41
Generally not, especially the folks that were my friends, they generally did not. Someone who didn’t know me, if I would trip over something or do something dumb because of my vision, you know, may kind of make fun of it or whatever. But I kind of learned to live with that.

45:02
You let it roll off your back?

45:05
Yeah, because there was no other choice at that point in time. And I had no idea of what the concept of ‘you’re going to be blind’ means because, as I said, my central vision was good. And since I never had good night of peripheral vision, I didn’t know what good night of peripheral vision was. So I really didn’t know what I was missing.

The good news through all of that is, since I had a peripheral field of less than 20%, I was considered legally blind. So my parents who both were blue collar workers, lived in a Boston suburb, used that opportunity to contact the Massachusetts Commission for the Blind. And they were able to provide funding for my college education. Now, back then, the criteria were that you had to go to school in Massachusetts. But I decided that I wanted to go to Notre Dame. So we convinced the commission that they would pay for me to go to Notre Dame. Otherwise, I never would have gone to Notre Dame.

First time I got on the airplane, my parents took me to the airport. I got on the airplane—back then there was no 911, no security, no would ever walk me to the gate. I’d never been out of New England, so got on this plane, then went to Chicago, and then changed planes and went to South Bend, Indiana. Here it was in the middle of nowhere, at 17, not knowing anyone and essentially being legally blind.

46:54
Was it scary?

46:56
Yes, Yes. I was probably too naive to think how scary it was. But I survived. Especially the freshman year was the most difficult just making the adjustment. And on top of that I was majoring in aeronautical engineering.

47:13
Oh, is that all?

47:14
Yeah. And it wasn’t like I have an easy breezy, you know, set of classes. So anyway, I made it through, graduated, decided to stay and get my master’s degree which I did at Notre Dame. And I went through the university with no special adaptation for my visual impairment. Because, back then, accessibility and the ADA didn’t even exist. So there was no compensation or extra time for tests or anything like that. But I survived. That, then I went to work. I got my first job. I worked for a couple years for the government in Dayton, Ohio, as an engineer designing material-handling systems. Decided that I couldn’t be a government employee for the rest of my life.

48:08
What was your vision? Like at that time? Was it changing rapidly? Or had it kind of stabilized? Or did you just kind of ignore it and just, you know, get through it.

48:19
So back then it was stable, from the standpoint that it wasn’t very good, but it was stable. So my corrected vision was about 20/50, 20/70. And my night vision was very poor. But with enough lights around campus, I could manage, you know, to get around without killing myself. And my peripheral vision was just my peripheral vision. So, you know, if I tripped on something, I tripped on something. I just kind of dealt with it.

48:58
To talk to us about what you’re describing is so amazing. It’s just almost like you’re one example of adversity and just kind of powering through it at such a young age. And as you mentioned, perhaps your naivete was a benefit.

So fast forward. You’re very well-educated. I’m assuming you continue to access healthcare and ophthalmology as needed, or maybe not. But fast forward to now. You have your first job, or to your maybe mid-30s. So what’s it like then living with your RP?

49:44
Yeah, so that started to become a critical time in my life, to be honest with you. So after, my second job was at in Pittsburgh with the Westinghouse Electric Company in the area of commercial pilot. So, after working there as an engineer for about five years and doing detailed work, and at times, I go hide in a conference room if I had to read prints, real small drawings with a magnifying glass—so I could read them and no one would see me.

And so after about five years, I’ve progressed into management. And so that eliminated the need for me to do very detailed engineering work, and redrawing things to that extent. It was more supervision and reading normal text, and that kind of thing. And then, shortly after that, personal computers started to show up in corporations. As a manager, I had my own IBM XP with a 10MG hard drive. And everyone thought that was that was great. So that kind of puts it in perspective. But the advantage that helped me extend my ability to continue to be efficient in the workplace was the contrast on the screens. The contrast was better than a written piece of paper. And the text on the screen was bigger.

51:35
I was just going to say we all know, those are two critical things that help people with low vision. And that is contrast and magnification. So going from paper to even the very first computer, that was a step in the right direction for low vision. Why’d we never think about it like that, but it had to have been, it was almost like it was accessibility immediately.

52:01
It was quite. It wasn’t called accessibility. And one thing I did do that was helpful is I was able to get a bigger monitor. Having a bigger monitor, everything was bigger. You know, the print was bigger, just because they had a bigger space to put it on. But back then, we were still using DOS, and there weren’t the accessibility features that you have in software today. But it still was a plus.

52:31
Well, yeah, because they weren’t thinking about that. They didn’t do that for accessibility.

52:36
Yeah, right. There was nothing in terms of accessibility. So finally, things caught up to me because I traveled a lot on airplanes, whatever, around the country for my job. And it got to the point where between traveling and trying to be efficient at work, I couldn’t do my job effectively anymore. So I contacted the Office of Vocational Rehab—that’s part of the State of Pennsylvania—and worked with them to enter a rehab program at the Greater Pittsburgh Guild for the blind.

And when I first went, it was kind of interesting, because they said, ‘Oh, okay, we got the six-month program. And you got to leave work for six months, and you’ll stay in a dorm right there at the facility, blah, blah, blah.’ So I said, ‘Well, number one, I’m working, so I can’t be gone for six months. And number two, we’ll have to work out some, you know, part-time program.’ So I did what I call the accelerated program, and the Greater Guild for the Blind were extremely accommodating.

So I went—I’ll never forget this—so I went on July 4th. I get confused in the year, but it was in the early 90s. And I finished on Labor Day. And I went three weeks for four days a week, Wednesday, Thursday, Friday, Saturday, a few more weeks, three days a week. And then I finished up going two days a week, Friday and Saturday and continue to work as I said I was on the accelerated program.

54:28
Nothing you do has been or sounds like the traditional path. And it’s really inspiring to hear these stories throughout your entire life, where you just—how I would explain it? You just put your head down and just did it. You didn’t let your vision issues, no matter what age, get in your way. And I think that’s really an important message that the audience—and people listening—needs to understand.

54:59
So the best thing I did was go to the rehab program and take advantage of the services that were available. And that helped me maintain my independence. It was, to be honest, really a mental thing to get over as much as a physical thing. Walking into work the first time with a white cane, you know, it was difficult. But the attitude was, is, ‘Hey, I’ve done what I need to do to be productive. If someone or a colleague or a client has a problem with that, that’s their problem, not my problem. Because I can continue to function and do my thing and contribute, then, whatever. So fast forward, I finished my career up at Westinghouse, and decided that I needed to embark upon something to keep me busy. And I wanted to do that some place in the blindness field. So I started by becoming a board member of BVRS in Pittsburgh.

56:11
You’re giving back, right?

56:12
Exactly. And I felt I had a lot to give back… having gone through the corporate world, corporate management ladder, and left as a vice president, and a visionary. So I felt that I had a lot to give back. And through my involvement in the board, I ended up having another opportunity as the interim CEO of the Pennsylvania Association for the Blind, which is where I came in contact with Dawn. And I did that for two years. And now I am working with Dawn on The SupportSight Foundation board, as well as the BVRS board. And I’m kind of waiting for things to pan out with the pandemic. So I can begin to pursue whatever my third career will be, hopefully, in the blind and vision area.

57:12
So you just don’t stop, which I think sounds like you’ve never stopped, you just kept going. And, you know, what I really love about your story is you tell it with, with such grace and ease. And, you know, if people did not know that this was your struggle, I’m going to call it, you just certainly don’t act as if you have lived your life as if it’s a struggle. It’s just part of your life. And I think that’s a really important message to convey to people who maybe have just been diagnosed with macular degeneration or are low vision. And that not to let it get the best of you, no matter what your age. Would you agree with that?

58:00
I agree with that 100%. I kind of liken it to decisions I haven’t made where I said to myself, okay, you can do two things. You can sit on the corner and sell pencils for the rest of your life—kind of analogy from some blind people in the past—or you can deal with it. And I made the decision, obviously, to deal with it, which is the right decision.

And I think with the technology that’s out there today, and organizations like The SupportSight Foundation, it’s in everyone’s best interest to maximize what they can do with their vision impairment in order to maintain independence, and to maintain a quality of life that that they use. There’s just so many opportunities and so much technology out there today. To kind of sit in the corner and feel sorry for yourself is not the right thing to do.

59:06
John, you epitomize that. And quite frankly, it’s really not just inspiring, but motivating. And I love your attitude. Your life story is really one about overcoming obstacles. It’s about attitude. It’s about empowerment. And like you said, making choices. You have access to community resources that were available to you. You pleaded your case; you and your parents advocated for you so that you could get a great education and Notre Dame. You know, you sought the healthcare you needed from a very, very early stage and good for your, God bless your parents, you know, because like you said, back then, very little of anything was known.

And certainly they took you to probably one of the most premier institutions in the country, if not the world at the time, Mass eye and ear. You know, many of our listeners certainly recognize that name. And you really took all the steps that—by the way, do you agree that this is the advice to give people who are listening? You know, follow that path. And you need to advocate for yourself no matter what the situation. What do you think of that?

1:00:22
Absolutely. I mean, it’s important to advocate for yourself, so that you can maintain independence. And it’s also important psychologically, to cross that boundary that says, ‘Okay, I have a visual impairment, I need to deal with it.’ That was one of the most difficult mental boundaries that I had to cross. Once I crossed that line, then it was okay. ‘Watch out, don’t get in my way, there’s all kinds of technology out there, there’s all kinds of opportunities, and the sky’s the limit.’ But in order to cross that divide, you need to cross that divide. That’s the one piece of advice I want to say to everyone that is, you know, make the decision and go for it because if you don’t, you’re going to end up sitting in a corner, probably for the rest of your life.

1:01:29
Well, I’m going start calling you ‘Don’t Stop Me Now John’ with affection. And I can’t think of a better way to close our conversation today, for folks who are listening on that, you know, kind of upbeat, very sage, very sound advice from someone whose entire life has been spent figuring out how to cross that divide.

So I want to thank you, from the bottom of my heart, for who you are, for what you’ve done and what you’re going to do and what we’re going do together. We couldn’t be more thankful to have you on our team. And thank you for joining us today.

1:02:14
Well, you’re more than welcome. And I’m so pleased to have been involved with The SupportSight Foundation and been invited to join the board. So going forward, as I previously said, we should do a lot of great things together. Thank you, Dawn.

1:02:47
And remember, for more information, please go to MyMacDLife.org. We have all sorts of resources and info there for patients who have MacD and their families. And remember to join us next time on MyMacDLife. This program is empowered by The SupportSight Foundation. The SupportSight Foundation’s mission is to save site for millions of people who suffer from age related macular degeneration, AMD, and lose their precious vision as a 501(c )(3) c public charity.

Our goal is to provide patient education and access to low vision resources to help individuals, families and caregivers whose lives are severely impacted by AMD. We’ve placed a high priority on connecting with people, their families and loved ones who live with a daily struggle of impaired vision. To learn more, go to www.SupportSightFoundation.org.

1:03:48
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.org this program is supported by amazing listeners like you.

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* Note: All listed transcript timings and wording are approximations.