S1E2: Maintaining a Positive Attitude!

Shawn interviews special guest Dan Roberts, a retired educator and book author who also serves as the editor-in-chief of Living Well with Low Vision; founding director of MD Support; and founding director of the International Low Vision Support Group. His organization, MD Support, is a worldwide non-profit public service organization committed to providing information and support for those affected by macular degeneration and similar retinal diseases.
Published On: February 4, 20210 CommentsTags: , ,

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In this episode…

Hosts Dawn Prall and Shawn Doyle begin with a conversation about maintaining a positive attitude with MacD, especially during pandemic times. Dawn shares tips, such as creating a gratitude or joy list, to assist with sustaining a healthy mindset.

Shawn interviews special guest Dan Roberts, a retired educator and book author who also serves as the editor-in-chief of Living Well with Low Vision; founding director of MD Support; and founding director of the International Low Vision Support Group. His organization, MD Support, is a worldwide non-profit public service organization committed to providing information and support for those affected by macular degeneration and similar retinal diseases. Dan shares his amazing, uplifting story about how losing his central vision affected his life. He offers tools, tips, techniques and ideas for people who suffer from macular degeneration and their families to apply in their MacD life every day.

Actress, singer, voiceover artist and SiriusXM radio show host Christine Pedi introduces a new segment from New York City. She stops by to share her inspired adventures, as she navigates life through diminished vision and transitions into the world of visual challenges.

The podcast closes out with the regular featured segment from Vispero’s Bill Kilroy, Senior Sales Director for the Northeast, and Mike Woods, Strategic Accounts Manager for Education. Vispero is the world’s largest Assistive Technology for the visually impaired serving people who are blind or low vision. Throughout this podcast, they highlight key Vispero products that can enhance people’s lives.

In this episode, Bill and Mike talk about the ClearView GO, a portable desktop video magnifier that can travel with the user. They share highlights of the low-vision device, including how this foldable video magnifier plugs into the wall or runs off of battery; gives users access to information on their desktop, whiteboard, blackboard or looking outside out of a window; and features a rotating camera to look at themselves for personal use like applying makeup and grooming. Hosts Dawn and Shawn wrap up the episode with fun trivia and information on additional resources.

What We Discuss in This Episode

This second episode covers the following featured topics:

“How do you stay motivated during adversity, whether it’s MacD; the world we live in right now; or any type of adversity people face?” (3:15)

“My suggestion would be when people ask me this question is a very simple exercise to sit down and do a gratitude list or joy list.” (6:13)

“We’ve got a great guest today on the show…. [who] gives a lot of tools, tips and techniques, and ideas that people can apply to their life today who are suffering from macular degeneration or their family.” (9:46)

“So I started producing programs, audio and visual for these groups, and we [the International Low Vision Support Group] now have 225 groups in 13 countries and the United States. (20:15)

“We were all put together into a committee, and we worked for a year developing a low vision rehabilitation model… to show patients and doctors the path that a person who’s diagnosed should follow.” (24:01)

“When we hear about this book, The First Year: Age-Related Macular Degeneration, can you give our listeners one or two tips from the book that you think would be most important for them to know?” (28:19)

“In your mind, what would you say are… one or two most prevalent myths and misinformation about this devastating disease for people and their families?” (36:20)

“I’m going to stop in briefly and share my adventures, as I navigate through the world with diminished vision and try to accomplish more and understand more about myself and the world throughout.” (46:11)

“Today’s featured product…. is a foldable video magnifier that can be plugged into a wall; it can run off of battery; and it can give a user access to information that’s on their desktop on a whiteboard or blackboard or outside looking out of a window, or if they’re using it for personal use, they can rotate a camera that can look at them.” (49:40)

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Transcription excerpts from this episode

00:41*
We’ve got Dan Roberts and Dan Roberts is a legend. He’s a just such an interesting guy. And he has a lot of interesting stories to tell about what he’s doing to really help people worldwide with that are suffering from MacD. Also, our friends from Vispero will be here yet again to talk about some remarkable Assistive Technology.

01:41
As you know, I’m a motivational speaker and a book author, and I really focus a lot on positivity and motivation, right? We’re living in tremendous adversity in our country with COVID. And not just in our country but across the world. If you turn on a news channel, or go to a website, bad idea, future news. It’s a recipe for depression. So, here’s what people ask me all the time: ‘Shawn Doyle as a motivational speaker, how in the world can you say to be motivated and to be happy during all this adversity?’ I was thinking about this today, it’s the same thing with having MacD—suffering through adversity. So my question to you, my esteemed co-host is, how do you stay motivated during adversity, whether it’s MacD, adversity, whether it’s the world we live in right now, adversity, any type of adversity people face? How do we stay motivated during adversity?

03:17
Well, I think it’s extremely challenging. And it really depends on attitude. And I can tell you that in my relationships that I have with folks who are living with this adversity of losing their sight, attitude is really the number one thing, if you will, that comes out.

03:35
Cannot agree more. So how do we maintain our attitude? Or how do we do that positive attitude thing?

03:41
Well, you’re kind of the expert in that. And so I’m going to flip it back to you.

03:50
I’d like to hear from our listeners on how they feel about attitude. But I want to say this in response: I’ve heard so many unbelievable stories from people about their attitude and how it changes over time. And you know, I’m going to pick up on that word you’re using too, “maintain.” I don’t think we can really maintain anything, unless we work really hard at it. But again, we have to have it first to maintain it. So I think attitude is from, ‘I’m not going to let this disease stop me’ and ‘I’m going to figure it out.’ To, ‘I’m not going to give in. I’m not going to give into the depression, to the sadness.’

04:50
If you will, like not letting it win. That’s right. ‘I’m gonna win. It’s not gonna win.’

04:54
Well, a very good friend of mine once said—who by the way has macular degeneration. He actually has Stargardt’s, which is juvenile macular degeneration and was diagnosed with that at age nine. And he told me once that he likes to remind people when he speaks with them—because this is what got him through—it is, you’re not going to let a little disease in your eye take over your life. And don’t stand for it like you give it the power to take over your life.

05:25
Yeah, that’s a really good one. Yeah, my suggestion would be when people ask me this question is a very simple exercise to sit down and do a gratitude or joy list. So, there’s two different lists. One is gratitude. It’s write down all the things you’re thankful for. Okay, I have MacD. But I’m so happy that I have a wonderful family. I’m so happy that I have a great spouse. I’m so happy that I have a job. I’m so happy that I have a home I have a roof over my head. The rest of me is very healthy, you know. So it’s just making a list of the things that you’re grateful for.

And the joy list is just writing down a list of things that bring you joy. And if you’re feeling a bit down, you pick one item from that list and say, well, today I’m going to listen to Trotsky because I love listening to Symphony music or I’m going to, you know, listen to my favorite book, or I’m going to call my best friend or whatever it is that brings you joy. So, I think those are two things you can do.

And I agree with you on that. Motivation is not an event. It’s a process, and we have to work on it every day. So, what can you do as a daily activity to tap into that gratitude list, or to tap into that joy list to bring you joy? I think it’s very important to fight the good fight. And if you do that, you certainly would be more motivated, inspired and positive. And that’s what this show MyMacDLife is really all about.

07:47
Well, I think you know, your point here is what I might take away from what you’re saying is that you are learning more and more about the subject macular degeneration and each time that you speak with not just me but our wonderful guests and experts and people who are living this life with macular degeneration. It’s really piqued your intellect intellectual curiosity. I’m glad you’re learning more and more, and it shows that you really do care, obviously. And of course you do, because this is what we’re doing to help people and for them to learn more about living with the disease; how the disease works; stories of people just like them who are struggling with losing their vision. And they’re not alone. There’s millions and millions of people out there and their caregivers and families.

08:58
Exactly. And we’ve got a great guest today on the show, Dan Roberts, who’s the founder of MD Support, a book author, and has an amazing life story about how losing his central vision affected his life. So I think our listeners are going to be really fascinated, but here’s what I think is so great: He gives a lot of tools and tips and techniques and ideas that people can apply to their life today who are suffering from macular degeneration, or their family. So, I think our listeners will find this interview to be really helpful and giving lots of great ideas about how to live the MacD life.

09:43
Well, Dan Roberts, welcome to My MacD Life.

09:46
Thank you, Sean, good to be here.

09:48
So happy to have you here. I wanted our listeners to know a little bit more about you. Dan Roberts is the editor-in-chief of Living Well with Low Vision; the founding director of MD Support; founding director of the International Low Vision Support Group; and he retired from a half-century as a teacher… and an author… and a composer… and a theatrical director and musician. He now dedicates himself full time to helping other people learn about and live with low vision. And because of his own need for support, he founded the MD support in 1995. And he says, become a leading patient advocate, lobbyist, industry consultant, advisor and low vision educator.

10:34
Dan, it’s obvious to me that you really have dedicated your life to helping people all over the world who have macular degeneration, or as we call it on the show MacD; and you’ve helped people learn to live with low vision. But my question is, what got you started on this journey?

10:56
Well, it was my vision. Yes, I was a high school teacher and theater director and did all those things. But I started noticing things disappearing in my vision and decided to go see what it was all about. And found out that I was going to be losing my central vision. And that was in 1994.

11:31
Wow.

11:32
So I panicked, which I preached now to not do. That’s the last thing a person wants to do. It’s a progressive disease. And it’s still progressing after 25 years. And so it’s very slow. But I panicked and quit my job at the high school. I had 23 years teaching and so I got retirement. And I quit my job at the church. I was a music minister and organist at the church. And I couldn’t play in the dark. And there were a lot of services that were in candlelight and that kind of thing. So I figured, well, I’m no good there. So, I quit that. And then decided I couldn’t direct theater anymore, because [of]… going back and forth between dark backstage and bright lights in your eyes. Yeah, I said, ‘Nope, this isn’t going to work.’ I’m gonna have to quit that too. So I figured, okay, I’ll pick up my accordion again and buy myself a monkey and go out and sit on the street corner make some money. That’s how I make a living. And, well, I don’t like monkeys.

12:49
You probably don’t like accordions too much either.

12:50
I’m just guessing. Nobody likes accordions.

12:54
You don’t like accordions? I’m sure we’ll get some letters about that Dan!

12:57
I wasn’t a bad accordionist. I didn’t mind it so much. But… decided I would try to think of something else to do. So, I spent a year just sitting on the front porch and thinking my life was over and being cheerful about the whole thing. And, of course, I’m not that kind of guy, usually. But I just went into depression. Finally, my wife said, you know, there’s this thing called the internet out there. Why don’t you learn how to use it? … And so I bought a computer and found a little group of people about 12 people that had the same problem I did. It was a whole email discussion group. That was the original Facebook.

13:40
I believe. Yeah. Email discussion group.

13:42
Yeah. And it’s still going, I ended up owning it. Took it over from the guy who didn’t want to do it anymore. And now there’s over 400 people there. Wow. So that grew. And that’s quite a community. And that’s kind of what started it all. We all shared our experiences and our information. And then I decided to put that information on our website, because I heard those things were pretty handy. I didn’t know what they were or how to do it. My first website was a giant Jpeg. I thought that’s how you did it. You know. I mean, I’ve spent hours working on this, this artwork, had it all designed and then uploaded it as a Jpeg. And it took an eternity to download. My nephew who’s a teenager and much smarter than I was said, ‘No, that’s not how you do websites.’ So he taught me how to do it first and went from there. And now it gets over 7,000 hits a month. And it actually works. It has links and everything.

I’m also very obsessive. And so I decided, ‘Okay, I’m going to learn everything possible about macular degeneration. Then I’m going to teach it everybody else.’ And my wife kind of inspired me to do that. So I thank her for pushing me in that direction. And so now we have, like I said, about 7,000 people a month, come to the website for that same information. And if you go there, you’ll see articles that I published in 1997. Wow, I’m obsessive. Like I said, that I keep everything. And I thought, well, this is a great archive of the history of the research and developments. And so that’s what it turned into, and then Prevent Blindness, the organization in Chicago that’s over 100 years old, said, ‘How would you like to, to come work for us?’ And so I ended up being editor-in-chief. So now, that’s where it all is housed. And I thought that’d be a good idea, because I’m in my mid 70s, and I’m not going to be around forever. So now they’ve got it, and I still manage it. But it’ll outlast me. And I thought that worked out pretty well, for both of us.

16:13
What a great legacy for you.

16:15
Yeah. Well, I never thought I’d need a legacy. You know, just teach school, retire and go fishing but didn’t turn out that way.

16:23
I guess my question, Dan, is kind of interesting because, you know, I’m a motivational speaker and a book author. And I noticed that there’s some people when they face adversity, they don’t really do anything about it. But it sounds to me, like at a certain point, you decided to rather than just sitting and feeling bad about it, you decide to do something about it. What was that turning point for you that led you to make that decision to do something instead of just sitting on your porch?

16:50
Well, that would have been my wife kicking me in the butt. If she hadn’t come out on that porch that day. I’m sitting there crying and wailing about my future, and my family’s ruined, and everything was going to go to pot. And she convinced me and so thank God, I had her. And we bought a computer that I managed to pay for, because I decided by the way to become self-employed and started a school of my own, which was an academy of performing arts with drama, and music and dance. And I had five teachers working for me. It turned out that was a blessing in disguise. And I became a much happier person, because I had my own school and didn’t have to worry about being told what to do. And I don’t like to be told what to do, obviously.

17:38
So where do people find this website you’ve been describing?

17:43
Md—as in macular degeneration—support.org.

17:48
So, Mdsupport.org. If you want some great resources, articles, places to go links, etc. for support for people with macular degeneration and their families, make sure to go to Mdsupport.org. Thank you, Dan. I also noticed something interesting about you that you’re also the founding director of the International Low Vision Support Group. So, tell our listeners, what’s the International Low Vision Support Group all about?

18:16
Well, it started because I realized that there were a lot of people not getting this information that I had been putting on the web for the last 20 years or so. This was in 2008. And I thought, ‘This is not fair.’ There’s still a lot of seniors out there, like what I was before this, who were just sitting on the porch and not knowing where to get information and support. They need this information. So, it occurred to me that I was already guest speaking at five different support groups around the Kansas City area on a regular basis. And I thought, why am I saying the same thing to all of them. And I said, there is this thing called the internet that I learned about. And so, I’m going to use that and find other groups around, and we’re going to communicate by the internet.

And so, I sort of created the first webcasts. These were slideshows with narration. And it was PowerPoint. And then I would send these to leaders of support groups around the country who wanted the same information. They needed help running their programs and providing materials. And I had that stuff right there on my website. So I started producing programs, audio and visual for these groups, and we now have 225 groups in 13 countries and the United States.

19:38
225 groups across the United States and in other countries…

19:45
…other American speaking countries, English speaking, and that just grew. It just happened because there was a need, and that’s kind of been my philosophy of life, which is if there’s a door, go through it. Don’t stand around the hallway because you’re not going to be doing anything. Of course, you want to remember to leave that door open in case you want to get back out. I have had to escape a few times.

20:11
So, there’s these groups that are meeting in person, I guess in the past, and maybe now virtually all over the Americas supporting each other in their journey through vision loss?

20:22
Essentially, that’s it. They are live groups, they have their own programs, too. But my design was for groups that were having trouble reaching the resources, getting speakers to come in… to their little town. And so I bring those speakers and programs to them from the internet. And I supply it to a volunteer leader who has a computer—and that could be a nurse or a retirement community, anybody on the staff. But we also have volunteers. One of my facilitators of the groups is 95 years old. Her group has four little old ladies in it. And they sit around every month, and they listen to my programs on the computer that she has. They go to her apartment. Then I have another group with about 180 people in it. This is in Taiwan. And they project it onto a screen in the auditorium and amplify the sound. So, they’ve got a regular production going on with theirs. Anybody can join, anybody can take advantage of it. And I’ve also posted all of these programs on my website, and the audio-visual library.

21:36
The same website you described earlier? So, they go to Mdsupport.org?

21:45
Yes. Just go to audio visual library

21:48
and they can see all of the presentations that are for the public. I do have some that are private for just the members of the support group. Because they are borrowed from places like Ted Talks, and other websites and conferences, where they have guest speakers and I will go and record them. I don’t make those public because obviously they’re copyrighted.

22:11
But sounds like a great resource. I know that you’re well known in the industry for developing a really interesting model known as—and I’ll repeat this twice for our listeners—it’s known as the patient advocacy model. So again, Dan’s really well known in the industry for developing this patient advocacy model. So, tell our listeners about the patient advocacy model. And what’s that all about? And how will it help them?

22:36
I have worked on the low vision rehabilitation model. Could that be it?

22:45
Yeah, I think that sounds right.

22:46
Okay. That was an initiative that I got involved in as one of five people. All of them were leaders or representatives of the major professional organizations, like the CLVT, certified low vision therapist organization. Another was from the [American] Academy of Ophthalmology. Another one was from the [American] Academy of Optometry. And we were all put together into a committee. And we worked for a year developing a low vision rehabilitation model, which can be found in our library on the website that explains the whole thing. But it was to show patients and doctors the path that a person who’s diagnosed should follow. I don’t like to tell people what to do. But in this case, these five organizational members decided that this is the way it should be. And if you don’t believe people from these academies, then I don’t know who else you’re going to listen to.

And so we put it into kind of a circle. When you go and look at the model, you’ll see that it’s in a circle, because this is a vicious circle, I guess, in a nice way. And let’s say you get diagnosed, the next step you take along the circle is that you look up a low vision therapist. And then that low vision therapist should send you on to a community organization, because all of these things have their purpose. And the community organization helps you with this and that and so on. It takes you all the way around the circle.

Now you could join it at any time on the circle. Let’s say you go to an optometrist. Well, he should send you to an ophthalmologist. If you need surgery, for example, right that’s on the circle. So, you can go back and forth on this circle, but you should stay on the circle. And, you should reach every one of those goals—low vision rehabilitation mainly being the one we’re talking about—which means training and daily living skills with low vision. To get that, you need to be referred from a doctor. You can’t just just go to a low vision therapist. You have to be referred, and if you’re not referred, then that person is just going to sit there with all that skill and talent that could be helping you. And so, we made sure the doctors heard about this. And we make sure the patients hear about it, so they can say that to the doctor, ‘Hey, I know I’m supposed to go to a rehab therapist now. So now tell me where to go.’

25:18
So it’s almost like these are stepping stones that people can follow along their journey.

25:24
That’s exactly what it would be. Yeah, it tells you where to go next. Because it’s the one thing I didn’t have when I left that office after my diagnosis. I wished there was somebody there that would have told me where to go next. And there wasn’t anybody there.

25:38
Yeah, that’s something we hear all the time, Dan, from people with MacD and their families is they get great, you know, medical care, but the support piece after the diagnosis seems to be a big gap in the industry.

25:52
That’s right, because—and I don’t blame them—the doctors didn’t go to medical school to learn to be counselors, or cheerleaders, or teachers, they want to fix your eyes. That’s why they went to medical school. Unless they’re an ophthalmologist with a university, for example. They will take the time. He will bring out bring out the little diagrams, and he’s even got a little statue of the eye that I can look at. And I’ll say, ‘Doc, I gotta go. You know, I got things to do today.’ And all he wants to do is teach me. So that’s the kind of doctor you want to have. But that’s not traditional. That’s not to be expected. From our doctors, we think of them as mechanics and we don’t ask the mechanics for personal advice.

26:40
Yeah, that’s a good analogy.

26:42
But the doctor should send you to somebody who can give you that personal advice. And that’s why we created this rehab model. So that the doctor is aware that Oh, there is a next step here that I should send this person to. And we hope that they’re following that.

26:57
So you’re on a journey, here’s some recommended next steps for you.

27:00
Right.

27:05
That’s a great suggestion. I know that you’d mentioned kind of this stepping stone or this roadmap. And I know that you wrote a book, which I found really fascinating, The First Year: Age-Related Macular Degeneration: An Essential Guide for the Newly Diagnosed. So I thought what a great idea to give people a guide like, ‘Okay, you’ve been diagnosed. Now what?’ Which sounds like it’s really mirroring your experience. So when we hear about this book, The First Year: Age-Related Macular Degeneration, can you give our listeners one or two tips from the book that you think would be most important for them to know?

27:43
Yeah, I was commissioned to write that [book] by a publisher who had a series called, The First Year. They had a different book for every disease that’s common, like diabetes, and irritable bowel syndrome. And they wanted somebody to write a book on macular degeneration. So they got a hold of me, because I had all that stuff they know about. And basically, the book was derived mostly from the contents of the empty support website, which is over 1,000 pages. So, I just condensed and put it into a 358-page book. And I tried to address the 10 questions, and tips. But there are 10 questions that a person asks, every time I get a phone call, and I do have a helpline. So I’m talking to people all the time, and the questions are addressed in this book, all 10 of them. And so I think probably that’s what they’ll learn from. It is the answer to their 10 questions. You have time for me to just read them real quick?

28:43
Sure, absolutely.

28:44
There’s the first question, what is AMD? Or what is MacD? How did I get it? Now the next question is, what should I expect? The next thing they’ll ask is what can I do to improve my vision? And then they’ll ask how can I live successfully with visual impairment? That’s the big one. Okay, I know what I’ve got. I know you can’t do anything about it. Now, how can I live with it? What types of doctors should I be seeing? What kinds of surgeries or interventions are available? Can they operate on my eye for example? Are there potential cures? What are those?

If this person is still employed, do I have rights for example? As a visually impaired person, should I join a clinical trial? That’s becoming a big one. And finally, where can I find more help? Okay, find this book. I’m not here to sell the book, but it does have the answers to those questions. And it’s got all the resources in it, and you can get a real cheap on Amazon now. It’s been on there for 14 years now. And you can get them used for about five bucks. Or you can go to the website and all the information is there, but you’re going to have to search through the website.

29:57
So, for those of you listening, make sure to check it out. The First Year: Age-Related Macular Degeneration: An Essential Guide for the Newly Diagnosed. And one thing I love about what the questions you just asked Dan was, I think I’ve always said that education reduces fear. And that if you can get educated, informed, then the fear is going to be reduced, because you’ll now know what to expect. You’ll now know, ‘What doctor should I see.’ And so, I think those are some really great questions. You agree with that idea about reduction of fear or having hope?

30:34
I call it fear of the unknown… the monster behind the door. Because when I when I was a child, there was a monster in my closet. I knew there was. I never saw him or heard him, but I knew he was there.

30:51
I thought it was a gorilla, because I had seen King Kong. When you see King Kong at the age of six years old, and I’m talking the original King Kong, the really scary one. That gorilla followed me through my entire childhood. And he lived in my closet. So I was terrified of him. Until one day, I went over there and opened the door. And there was nothing there. I got the courage. Yeah, to find out there wasn’t really anything in there. What I did find, however, was this little skinny monkey that I used to play with. Maybe that’s why I’m afraid of monkeys now.

31:37
And I thought, well, that gorilla is just a skinny little monkey. And, and I thought, ‘Oh, that’s a good philosophy for the rest of my life.’ To have the courage and the ambition. The ambition to go and find out about it. Don’t just cower on the front porch. Get out there and do something about it. And if you can’t do it yourself, find somebody who can help you.

32:12
There you go. Yeah, it’s great stuff. And I think that taking the mystery out of it, taking the misunderstandings out of it, that’s pretty important stuff. So, as you know, MyMacDLife is powered by The Support Site Foundation. So, how do you see us working together, you know, your organization and our organization. There are millions of people out there that need help due to this awful disease. Any thoughts about how The Support Site Foundation and your organization could work together?

32:45
Well, we’re actually doing that. And I don’t want to let the entire cat out of the bag. But there are at least five major macular degeneration associations and 501(c )(3)’s in this country. I was one of the first. Then I became partnered with the other one macular degeneration foundation. And then we started finding the others, and we all started seeing each other at conventions and conferences. And we found out we liked each other, but we realize we’re all doing the same thing and some of us are reinventing the wheel, or we’re spinning our wheels, so to speak.

So, we have come up with this opportunity. Like I said, I don’t want to say too much about it, but an opportunity to form a portal that will lead people to all of our organizations, depending on what they’re looking for. We’re very excited about it. And Supportsight.org was also involved in this. They, MDF, American Macular Degeneration Foundation, Brightfocus is involved in this; MD Support, of course; oh, and Prevent Blindness—I worked for both of those and they’re both involved in this as well. So that a person can go to one website and find all of us.

34:32
So if people stay tuned for details when they go to Mdsupport.org to learn when that will happen and as all that comes together…

34:40
It’ll probably be announced widely. The last meeting, we had was to decide how we’re going to put this word out. And I think we all agree that obviously one of the best ways is everybody—all of the organizations—put this on their websites with a link to that site because we all belong to it.

34:59
Yeah, well, we can definitely. We’d be glad to do that.

35:02
You also go to any reputable site that has to do with macular degeneration. And if you’ll see the link to this new site, click on it. And that that’ll take you there.

35:13
Great. So, one other question for you, Dan. You know, on My MacD Life, as we call our show, we talk often about how there’s a lot of myths. There’s a lot of misinformation out there about macular degeneration—as we call it, MacD. So, in your mind, what would you say are… one or two most prevalent myths and misinformation about this devastating disease for people and their families? What misinformation would you like to clear up?

35:43
There’s at least three. The biggest one is that blindness can result from MacD. It can’t and it won’t. That’s the myth.

36:00
We have, over the past decade, managed to get that out of the language. It used to be we used to hear macular degeneration is the leading cause of blindness in senior citizens. Well, that’s absolutely untrue, because it doesn’t lead to blindness. And we have fought that long and hard. And now you rarely see that anymore. What you see is macular degeneration is the leading cause of low vision or visual impairment, but not blindness because we don’t lose our vision.

You see, there’s people walking around you all day that have MD or MacD. And you don’t know it. Yeah. They’ve learned to adapt to it. They have learned to deal with it. They’re leading very successful lives with this condition. And so, you’d never become a totally dependent person. And then I learned well, even if you’re blind, you’re not totally dependent. Because you can do without your eyes and actually do the research on this 99% of what we do in our daily lives we can do without looking. Wow, the only reason we look is because we can

37:29
And the next one is the myth that there are two different expressions of the disease MacD, two different conditions, dry and wet. That’s misunderstood. They are not the two different conditions. They are the same condition. They are both macular degeneration. The wet form happens to be an advanced development that stems from macular degeneration, where the blood vessels decide to grow and go in there and bring nutrition to the dying cells. But that’s not a disease by itself. You can’t have wet macular degeneration unless you started with dry macular degeneration… wet comes from dry. But essentially, when you inject the new drugs into the wet MD eye, you have taken it back to the dry form of macular degeneration, because you’ve stopped the blood vessels. So, it’s hard to explain that to people who are just starting. But that’s a misunderstanding that needs to be better taught, I think.

And finally, you cannot reverse macular degeneration. You cannot reverse it with supplementation, you can’t reverse it with electrical stimulation, or with eye exercises or any other therapies. There is no therapy or treatment that’s going to reverse this disease.

38:57
And it really bothers me when I see that advertised that such and such is going to reverse your disease. It may temporarily improve it, but not reverse it.

39:00
It may improve your vision, but it’s not going to reverse the disease itself. If you could reverse the disease, that means you have cured aging.

39:29
Well, Dan, you are a fountain of information. I love your energy and your passion. And I really appreciate what you’ve really done for your program to think about this. But I mean, think about the hundreds and thousands—perhaps millions—of people whose lives you’ve touched through your work.

40:07
Well, I really appreciate everything that you’re doing for people out there and their families. I really appreciate all your work and your efforts. And thank you so much for being on the show today. You’re absolutely fascinating. And maybe we’ll have you back again sometime in the future with that, would you be willing to do that for us?

40:21
I would love to. I do want to close with information and human interaction: Those are the things that are vital to maintaining your quality of life when you’re dealing with low vision. So, in addition to AMD support, several other top-notch organizations exist for the same purpose that I told you about a minute ago, including Supportsight.org, and what you’re doing here with the podcasts. Patients can not only survive vision loss, but they can flourish in spite of it. So, I hope this podcast will leave many of them to the services that we provide. And I appreciate you inviting me here today.

41:13
Hi, everybody. This is Christine Pedi. And I am coming to you from my cozy little studio apartment missiles in a tiny nook in the Hell’s Kitchen neighborhood of New York City. So if you hear sirens or motorcycles are very loud, cursing.

Welcome to my world. I am a radio host and an actress, and a singer and a voiceover artist. And that’s what I do for a living. I want to introduce myself because I’m going to be stopping by occasionally, during these podcasts to share with you my adventures, as I transition into a world of visual challenges.

I think I’ll sort of just start and use today’s segment. To give you a little history. I started as a very little girl with—as soon as I was old enough to convey information to my parents—very, very, very near-sighted eyes. My lenses were probably at least a quarter of an inch thick, easily. And I had these little pink and white striped cat glasses that I used to wear, and I hated them because the rings around my lenses made my eyeballs look so tiny. As a result, I just hated the frames. Poor cat glasses, it’s not your fault. But even to this day, I can’t wear cat glasses, even though they’re back in fashion. I wore glasses till I was in the eighth grade. And then I got hard contact lenses. Yes, kids, contact lenses used to be hard. And in college, I got soft contact lenses. And I had a series of complications. I had a detached retina in my 20s.

I had strabismus surgery because my eye crossed—my eyes don’t have equal strength. My dominant eye is my left eye. That’s the eye that I read out of and focus out of, I can’t really focus independently out of the right eye. And so I have this eye turn. So I had a strabismus surgery to correct that.

I had cataract surgery in my 40s and then had two detach retinas in my dominant eye in a month. And all of these involve silly little anecdotal stories, which I’ll get to in the next episode of adventures with Christine. Oh, the point is that at this stage—after all of that—I then, of course, had glaucoma issues. And I’ve had, I think two or three glaucoma surgeries. So I’ve been under the knife, and I’ve had the pressures of losing almost all my vision in my dominant eye. And so I had to then compensate and use this less-than-optimal right eye and I was so miserable about that, just so miserable about it. Until of course, that eye started to go.

Now I am navigating through the world with this diminished eye, which is steadily having more and more diminished vision. So this is my challenge. I live alone and you know, I’m an actress. So these are all things I’ll touch upon as we move forward with this podcast. It’s my goal to talk about the challenges and to sympathize with you and everybody, when it comes to the things that we are struggling with, but also to understand the things that we can rise above. And at all costs, laugh about a lot of this because, come on, some of it is pretty funny. It is. And if you don’t find it funny, stick with me kid.

So that’s who I am, Christine Pedi, who will come to you from my little studio apartment most of the time, I might do some things walking the streets of Manhattan, as I learned how to use the cane. But I’m going to stop in briefly and, as I said earlier, share my adventures as I navigate through the world with diminished vision and try to accomplish more and understand more about myself and the world throughout. I know it’s going to be a challenge—and maybe you’ll help me and maybe I’ll help you. Let’s see what happens!

45:45
So, Dawn, I understand for this Vispero Assistive Technology piece, they’ve got some really fascinating technology to talk about. I’m just curious, what is it this time?

45:54
Well, you know Shawn, it’s always fascinating. This week is the ClearView Go.

46:04
I love the name of that. It sounds like you can just take it and you can go.

46:08
Shawn, you are so smart. You’re just always getting it.

46:16
The category that the ClearView Go falls under is called portable system technology. So it’s meant to take on the go. It’s durable, foldable has all the aspects of like a more of a sturdy kind of desktop, more permanent kind of reader and magnifier, but it’s sleek, and you can throw it in a case; and you can pack it up, throw it in the car and take it to see the family…

Or you can take it to school. You know, there’s all kinds of uses. So it really is moving around different rooms in your house, you know, kind of like a laptop.

47:09
My name is Bill Kilroy. I’m the sparrows senior Sales Director for the Northeast, and I’m joined by my colleague, Mike Woods, strategic accounts manager for education for the sparrow. Hey everybody, Mike and I are very pleased to be on this podcast my MACD life, and we hope to tell you a little bit more about our organization and the types of tools we produce. This Sparrow 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.

Well, today’s featured product that Mike and I will be discussing is a device called the ClearView Go. The ClearView Go is from our Optelec division. And it is a piece of low-vision equipment that falls into the category of desktop video magnifier.

But unlike a traditional desktop video magnifier, the ClearView Go is unique in the sense that it is a device that can travel with the user. So it is a foldable video magnifier that can be plugged into a wall, it can run off of battery, and it can give a user access to information that’s on their desk up on a whiteboard or Blackboard or outside, you know, looking out of a window, or if they’re using it for personal use, they can rotate a camera that can look at them. And they can do everything from applying makeup to you know, checking moles, those types of things. It is a piece of video magnification equipment.

So the user will have a monitor facing them behind the monitors a camera and lighting system that looks down at a platform where their print material or object will be magnified. So you can raise the magnification anywhere from two times to 32 times to get it to a comfortable viewing for you know, reading, etc.

This is a device that has a 5-hour battery life. It has four for high contrast it has 35 different high contrast color modes, and it is something that once you’re done with it. If you’re at school, for example, you can pack it up, take it back home, use it at home to do your homework, pack it back up, bring it the next day to school and be on your way. Mike, you see these products a lot in education. Tell me how do people use them in your world?

49:45
Yeah, absolutely. This has been a top seller for me in the education market. The neat thing is it comes in two screen sizes. So you’ve got a 15-inch and a 17-inch and so depending on what the need of the individual is, you know you’ve got those options, but the students love it. It’s possible I think he would mention, it’s only around 10 pounds.

So it’s definitely, you know, pretty easy comes with a rolling case as an option, which would allow you to, you know, transport it even easier in between classes. But the other thing is the quality of this device is top notch, the high-definition camera is super great quality. And the magnification on distance on this is spectacular. And the other thing is the quality of it. As far as you know, the robustness of the product, you know, I traveled with my unit. And prior to COVID, I was traveling a lot, and I was taking this thing, and I was packing it up in my luggage, and it has been great, it’s really taken a good beating. And that’s what I think you’ll find with all of our products.

50:42
I think the key thing is that the Assistive Technology, number one, do its job. But number two, that it gives you great durability, this is a product and particularly when it’s used, you know, we think of this being used a lot by students, but it can be used by anybody at any point time. So this can be used at work, it can be used at home, it can be used at school, wherever.

But Mike hits on a great point, which is kids in students are a toughest audience. So if your equipment isn’t durable, it’s not going to last. And we’ve had this product out well over a year now. And we’ve had nothing but great reports back and reviews on this as far as a device that can you know, fold up, be packed away taken, you know, set up at home set up at work set up at school. And it just keeps working for the user. Mike, any final comments?

51:30
Yeah, I was just going to say the other thing I know a lot of individuals like is you have three selectable magnification ranges. So if you have a student or an individual that needs to start out at a higher magnification range, you can customize this unit. And you would mention those 35 color modes. Everything’s customizable. It’s super simple and easy to use. Overall, it’s a great product.

51:49
Well, I couldn’t agree more. And thank you, everybody for joining us today. You know, to learn more about the ClearView Go a couple different ways. You can call us at 1-800-444-4443. And talk to a customer service representative who can send out some information or connect you with a local resource who can potentially show you a device. The other way is to visit us online at www.vispero.com. Thanks very much and have a great afternoon.

54:55
So here’s a practical tip for living every day with macular degeneration. It’s actually pretty simple, but sometimes people don’t think about is increased task illumination. First of all, there’s a lot of great lamps out there, flashlights, illuminated magnifiers, something to think about. Next is a task lamp or even a daylight bulb. So on that document, you’ll be able to read much more clearly. And then the last one is to bring your lighting within one foot of the printed item that you’re trying to read. So I think that’ll really make a big difference for you. And so there’s a tip for living with macular degeneration is increasing your task illumination.

55:37
Hey, everyone, thank you so much for spending time with us today. We’re really glad you’re here.

55:44
Yes, it’s definitely a privilege and a pleasure. 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 My MacD Life.

This program is empowered by The Support Sight Foundation. The Support Sight 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) 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.

56:45
Thanks for being with us on My MacD Life, 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. During the season of giving. Please consider a donation to keep on mission moving forward. Remember to subscribe to this podcast on iTunes or wherever you get your podcasts. Until next time, keep living with hope.

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

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