The Energy Required to Live With MacD

Dawn interviews special guest Richard Tapping, Vice President of Vispero, about Assistive Technology; Vispero’s history, philosophy and its three brands: Freedom Scientific, Optelec and Enhanced Vision; and the benefits of using magnification devices. Richard talks in detail about how these tools enhance quality of life for people living with MacD and low vision, as well as Vispero’s two-step approach to addressing individual needs.
Published On: February 18, 20210 CommentsTags: ,

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In this episode…

Hosts Dawn Prall and Shawn Doyle begin the episode with a conversation about energy. They discuss how much energy people end up having to expend after being diagnosed with macular degeneration—from determining next steps; to discovering available resources; to asking the doctor follow-up questions; or even simply to sort it all out. Dawn also talks about the added challenges when having to access the computer, internet or written materials they need and why—for these reasons among others—experts say that macular degeneration affects not just the individual, but the entire family.

Likewise, Dawn mentions that in addition to energy used in educating oneself about the disease, there is also a lot spent in navigating ordinary life tasks with MacD, such as researching insurance or buying a household item online. Shawn shares two strategies for tackling difficult tasks while living with MacD, as author of a book on productivity. He offers tips on identifying one’s maximum productivity zone, or MPZ. He refers to it as the time of the day when you have the most energy. The second strategy he conveys is about finding an advocate to assist in the tasks rather than going it alone.

In the next segment, Dawn interviews special guest Richard Tapping, Vice President of Vispero, about Assistive Technology; Vispero’s history, philosophy and its three brands: Freedom Scientific, Optelec and Enhanced Vision; and the benefits of using magnification devices. Richard talks in detail about how these tools enhance quality of life for people living with MacD and low vision, as well as Vispero’s two-step approach to addressing individual needs. He shares a personal story about his grandfather with MacD and how taking small steps with easing him into magnification technology positively impacted his life by allowing his grandfather to participation in a regular hobby he had given up on. They cover how and where to find ease-of-use devices to assist people with MacD or low vision, concluding with a discussion on their affordability.

Actress, singer, voiceover artist and SiriusXM radio show host Christine Pedi stops by to offer her thoughts in the following regular segment, where she navigates life through diminished vision and transitions into the world of visual challenges. In this episode, Christine shares her inspiration from reading Norman Lear’s memoirs, Even I Get to Experience This. She offers her positive takeaways from the legendary television writer-producer’s experiences in the book. She relates how his words remind her to see what she is going through, such as a new downturn in her vision, in a slightly different and positive way—that even with the highs-and-lows and ups-and-downs in life, there is room for gratitude and wonder. She also relates how his story conveys that one single moment in life does not have to define anyone’s entire life, as with vision loss for her.

Shawn then takes a moment to talk about how to maintain hope when living with macular degeneration. He offers insight into using technology, orientation, practice, plans, engagement and education as key strategies to preserve hope for a brighter, productive future even when struggling with MacD and vision loss.

Dawn and Shawn introduce the closing regular segment on new Assistive Technology, featuring Vispero’s Bill Kilroy, Senior Sales Director for the Northeast, and Mike Woods, Strategic Accounts Manager for Education. In this episode, Bill and Mike provide details and highlights about the ClearReader, a portable scanning and reading unit and Optelec product. They describe how this versatile all-in-one unit is popular with customers, offering 59 high-quality reading voices that can read in 31 different languages, which are easy to change. Mike outlines top ClearReader features, which include its built-in stereo speakers, headphone connector, HDMI port to output, USB port and SD memory card slot, with a rechargeable lithium ion battery.

Mike adds that is it foldable, lightweight and has adjustable volume and the speed of the text being read back. Bill and Mike conclude with information on how to learn more about the ClearReader unit and how it has helped people they know remain independent. Co-hosts Dawn and Shawn close out the podcast episode with additional links and resources for those living with macular degeneration.

What We Discuss in This Episode

This episode covers the following featured topics:

“We’re happy you’ve joined us, we’re excited to bring you some great information, education and inspiration. We really want to make a difference in the life of people who are suffering with MacD, and we call it MyMacDLife.” (00:53)

“Our expert today is president of Vispero, who by the way is the leading manufacturer of all the Assistive Technology devices out there to help people with everyday tasks.” (1:32)

“[Richard Tapping] is really an expert on the whole spectrum of what’s out there for people to use and help them read, watch TV, see pictures of the grandkids—all the things that are important to people that are really challenging when you have MacD.” (1:50)

“That’s what we call our maximum productivity zone, MPZ—so what’s your maximum productivity zone?” (5:52)

“Some of those brands include Freedom Scientific, Optelec, and Enhanced Vision…. These companies have products and tools that can help provide access for folks that still want to read their mail or read a book, read the newspaper, do their own banking, use a computer have access to email, things of that nature.” (9:49)

“These tools are incredibly important to daily functioning, as people get diagnosed and start to experience some vision loss.” (10:54)

“The RUBY handheld magnifier is one of the simplest video magnifiers. The contrast, the design, the buttons, and the controls are designed really effectively. They’re very simple to use, they’re very intuitive.” (22:07)

“Freedom Scientific, for example, is very much focused as a priority on kind of total blindness and tools for total blindness, so they have screen readers for a computer.” (26:04)

“It reminded me that whenever I get a new downturn in my vision, a new little portion of my field of vision that doesn’t look right…. to allow me to think about what I’m going through in a slightly different way.” (39:53)

“I’d like to talk about some ways of maintaining hope and it actually spells out the letters hope, H-O-P-E.” (45:57)

“Today we’re going to be talking about the ClearReader, which is an Optelec product, and this product is a portable scanning and reading unit.” (51:32)

“I’ve got a lot of friends of mine that are totally blind that actually use this because it’s very simple and easy to use, just has a few buttons so it’s not very complex to learn.” (53:19)

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Transcription excerpts from this episode

00:34 *
Hello, everyone and welcome to MyMacDLife. I’m your co-host, Shawn Doyle, professional speaker, trainer and book author, and I’m here today with my co-host the lovely and talented, the amazing, the incredible, the irreplaceable, Dawn Prall, the founder and executive director of The SupportSight Foundation, and a visionary. Hey, Dawn.

00:54
Hey, Shawn. Hi, everyone. We’re happy you’ve joined us, we’re excited to bring you some great information, education and inspiration. We really want to make a difference in the life of people who are suffering with MacD, and we call it MyMacDLife.

01:28
How are you doing today, Shawn?

01:29
I’m doing great. I’m just so curious. Who is our expert for today on the show?

01:32
Well, our expert today is vice president of Vispero, who by the way is the leading manufacturer of all the Assistive Technology devices out there to help people with everyday tasks.

01:48
He’s got a lot of really great history. He’s been in the business for a while. He’s really an expert on the whole spectrum of what’s out there for people to use and help them read, watch TV, see pictures of the grandkids—all the things that are important to people that are really challenging when you have MacD. So I know our listeners are going to tune in to Richard and really enjoy it. They’re going to love him.

02:30
Support for today’s MyMacDLife podcast comes from Healthy Vision Association, Novartis, Vispero, Centric Bank, and Hinkle, Stein & Associates.

02:48
So this is the part where we kind of go back and forth on different things that have occurred to us—what’s on our mind. I know you like to call it ‘what a week’ but sometimes I don’t break things up into weeks. They’re like in much bigger chunks.

03:02
So, Dawn, what’s going through that amazing brain of yours right now.

03:06
Thank you for that.

03:07
What are you even thinking about?

03:09
Well, here it is. I’ve been thinking about energy.

03:13
Hmm.

03:14
So let me explain to you before your crazy little mind goes off in about 30 million directions. Which I love about you.

03:21
How did you know? I’ve already thought about five.

03:28
I’m talking about energy in trying to figure things out. Okay. Let me lay it out. So, undoubtedly, when you’re first diagnosed—or when a patient is first diagnosed with macular degeneration—it’s devastating.

03:47
It’s got to be so devastating.

03:50
We at The SupportSight Foundation get so many calls on a regular basis saying, “My doctor just told me I have macular degeneration and I’m going to lose my sight. What do I do?”

So how it relates to energy is it takes energy to figure out what to do next. It takes energy to figure out what resources are out there, like MyMacDLife, this podcast, or handouts. Or, you know, frequently asked questions to ask your doctor. Or just to even sort it all out.

And when you can’t see, no matter what level of low vision you have, it’s even more challenging to access your computer, the internet, the written materials that might be there. So it’s harder, or it can be more challenging, which is why we always say that macular degeneration affects not just the individual, but entire families.

So I’ve been thinking about even in my own life—and I’m sighted: ‘Okay, how much energy it takes me to even get like a car insurance quote?’ Or ‘I want to buy a new bed.’ Okay, just to research how I’m going to buy a new bed. So what do you think about? Not just energy to find out more about the disease and how, what do you do next, and what steps you take, and resources out there, and how do you gather all that—but just the energy that it takes to do things with low vision.

05:31
Well, I wrote a whole book about productivity. I’ve often thought that people are either night owls or early birds. And I’ve always said when I do training and speaking and in my books that if you’re an early bird, do those difficult things early when you have the most energy.

If you’re a night owl, and you’re like, wow, 11 o’clock, 12 o’clock, I’m like in the zone at you know, almost midnight, then do those things in the afternoon. So what I’m basically saying is to pick a time zone. That’s what we call our maximum productivity zone, MPZ—so what’s your maximum productivity zone? I’m not necessarily a morning person. So I’m much better off doing something in the early afternoon. Because that’s when I’m at my peak, if I got up at, you know, 6:30 in the morning, and then I’d be like, ‘I don’t have the energy yet.’

So I think one strategy is to pick when is your MPZ, your maximum productivity zone. To do that, and the second thing I would suggest is to get an advocate with you. And I’m sure you’ve talked about this many times, Dawn, to say, ‘Well, let me get somebody to help me.’ Because I think that a helper is someone who’s going to pull you up and say, ‘Come on, you can do this,’ or ‘I’ll help you’ or ‘I’ll look for you’ or ‘I’ll sit beside you while you look,’ or, you know, whatever it is. But just having an advocate or a person that has your back, I find when you have low energy, they can pull you up and raise your energy level. So those are the two big ones that I think but, Dawn, what are your thoughts? What would be one of the keys do you think for our listeners in terms of getting that energy to fight the good fight?

07:09
Well, I think what an awesome suggestion for folks out there who are listening and really for anyone, just exactly what you said. I mean, what I also love about you is that you can give really concrete, simple not complicated suggestions and ideas for people and that’s really what we want to try to do. We want to do here on MyMacDLife is some takeaways.

07:35
All about the tools.

07:37
Yeah, I’m not compelled to add anything more to what you what you suggested. Those are two simple takeaways. And I think I would just tie it up in a nice tidy bow and say this: Don’t be afraid to ask for help.

07:53
I think that’s a great one. And if you would like to know a little more about your productivity or maximum productivity zone, we do have an expert for you on MyMacDLife.org. You can go and pick that up.

08:05
Thanks, Shawn. This is great.

08:06
Thank you!

08:14
Hey, everybody. We’ve got a great guest today on MyMacDLife. We’re bringing Richard Tapping, who’s Vice President of Vispero, to all of you today. And the topic that we think you’re all going to really enjoy and learn more about is Assistive Technology. And Richard, that’s the space in which he is a leader and an expert. And we’re going to have a conversation with him about that. Hi, Richard.

08:43
Hey Dawn, how are you?

08:43
I’m great. How are you today?

08:46
Very well, very well.

08:47
Good. Thanks for joining us. So you heard my preamble. I think it makes sense for you to just kind of take it from here and in the conversation and explain to our listeners, what is Assistive Technology? And who is for Vispero?

08:47
Yeah, so let’s start with who is the Vispero. It’s an umbrella company for four or five different companies that manufacture solutions for those with vision loss. Some of those brands include Freedom Scientific, Optelec, and Enhanced Vision. Those are the most prominent that we have. And these brands manufacturer are tools that as people may lose, may lose some vision or all the vision. These companies have products and tools that can help provide access for folks that still want to read their mail or read a book, read the newspaper, do their own banking, use a computer have access to email, things of that nature. I mean, we’ve been doing these tools now for I think 40-45 years.

09:52
Wow.

09:53
The technology has really come a long way, and people should really perhaps think about these tools as a way to accommodate or provide the visual enhancements that they may have lost through their vision loss. So macular degeneration, MacD, is probably one of the most prominent ones that exists. And that’s kind of where it stops. Once a patient finds out or gets newly diagnosed with macular degeneration, they’re often not told that, you know, these types of tools do exist, because the doctor wants to try and solve the issue. They want to try and cure the loss of eyesight, and they cannot do that—not in all cases.

And there’s not a lot of education or awareness then for the patient to help them overcome those daily challenges related to vision loss. Everything simple from, ‘Is this envelope… is this mail for me or not?’ would be one of the simple ones. Setting your temperature and your thermometer, you know, getting that right. I struggle to see that, and I have no vision loss.

10:53
Right.

10:54
So, these tools are incredibly important to daily functioning, as people get diagnosed and start to experience some vision loss. But one of the largest things I find is that because of that lack of awareness, you know, people have no idea that there are tools that absolutely do help and reinstate, reinstall the independence that someone may have lost over, you know, the vision loss.

11:20
Right. So, Richard, you know, a couple of things I want to pick up on that you said, and then let’s circle back to the company Vispero. So, 45 years ago, it occurs to me what was going on then, that someone recognized that this technology could help people with low vision, and people who can’t see to, you know, do their activities of daily life, like reading watching TV, etc. So it was created 45 years ago, technology changes a lot, you know—but if you can’t see very well, and you’re older, like with macular degeneration—is it really a computer or technology? How’s the technology part fit in?

12:06
Well, let’s discuss what does it mean to have macular degeneration, Let’s try and define a little bit the vision loss, right, so we can start to think about how this technology can actually accommodate these folks.

So, you know, macular degeneration for a lot of people means that you get some central scotoma some obstacles in your central vision, and it can take various shapes and sizes. Sometimes semi-transparent, sometimes not—very individual to the person experiencing it. One thing is consistent, right? One thing is consistent across all patients, because of that central scotoma, that central vision loss, you know, if a person is trying to read some text, well, the macula part of the eye is the responsible part for the detail. And when you’re trying to read text, and that’s the part that’s obscured somehow, it can make it incredibly difficult to figure out what that word is, if three or four of those letters are missing.

13:02
And don’t forget a lot of our audience actually, I mean they’re living that, Richard. So that’s why this information is really important. But you know, keep going. It’s just it’s, it’s good stuff.

13:14
So then imagine if you’re trying to read a word in three or four letters, uh, you know, you can’t quite make them out because of this central scotoma obstruction in your central view. So what they figured out 40 odd years ago was that, well, if we use magnification, you can make the letters large enough that you can see them around that obstacle. And that’s really what magnification does. Every one of the magnification products that we have is basically that principle. It’s, ‘Let me make it bigger.’ So you can see around that scotoma, and then you can still read the word or the letter, you know, the detail that you want to read.

13:51
Gotcha.

13:53
And then the other part here, the other important point here is contrast. So as I mentioned earlier with with the central scotoma, sometimes it’s, you know, completely blacked out. And otherwise, it’s just a lot of contrast. And, and this will depend very much on the individual and even the eye condition to some degree. But generally speaking, there could be some loss of contrast. So having increased contrast, having a more bold, you know, black lettering, for example, on a white background can do wonders for people with macular degeneration, and other eye diseases. So those two things are really critical to any technology that’s aiming to try and provide access to print which is what these ultimately are trying to achieve.

And then the third component to that is lighting. You know, lighting alone, without magnification can often be good enough for someone to start reading their mail, particularly in very mild vision loss. Just good lighting will make an enormous difference to being able to read something and not read something. I mean, we’ve all been in the restaurant, you know, trying to read the menu.

15:00
Right

15:01
And not been able to see it, and you get your phone out, but the flashlight and all of a sudden you can read it. Well, the same principle applies with revision laws, that if you introduce good lighting, you can generally get good access to the, to the letters. And yes, you may have still some central scotoma, some central occlusions there that are not allowing you see some detail, but that’s where we add the layers of magnification and then contrast to provide really a good level of access to whatever print that someone might be trying to read.

15:26
So magnification—key, bigger letters—contrast, like you said, and you know, when I speak with a lot of our constituents, and folks who call The SupportSight Foundation to learn more, you know, once they find out they’ve been diagnosed, or even if they’ve had it for a while, they still, you know, have questions. So contrast black-on-white, white-on-black. You know, blue-on-black. So there’s a variety of them, as you said.

15:58
That’s one of the technology advances that have happened over the years, it’s not just an enhancement of, you know, making the text blacker, or the paper wider in terms of the visual enhancement, but they’ve been able to introduce all types of different color combinations, as we change, you can really customize it now to the very specific need of a patient because again, as I mentioned, every patient will experience it slightly differently. And while yellow might work for somebody, for the next person that it appears to have exactly the same condition, they will not like yellow. So having these, you know, an array of different color combinations for contrast, can do wonders.

16:36
Right, and then light. So magnification, contrast and light. And it sounds like these, you know, I think it’s important for people to know that these products as your vision changes, as you proceed from maybe early stage MacD to late or intermediate, these products will, you can increase the magnification, right? Maybe a different contrast color is something you need, then you needed five years ago…

17:07
You asked the question, what was the technology like 40 years ago, and it wasn’t very advanced, It was a glass magnifier, and maybe a bolted on light somehow that provided some magnification for you. Well, now, the types of devices for example that Vispero has to offer for its friends, we have digital magnification now, right, not a single magnification. So we can remove the distortion from a rounded magnifier and digitize it on a flat screen, provide much more field of view. In other words, get more text on the screen. So it’s much easier to read much more comfortable. And now because it’s a digital image, you know, that handheld magnifier, you’d have to have 1-in-3x and 1-in-5x and 1-in-10x depending on what size texture you were trying to weigh.

17:51
Yeah, the old way. Right.

17:53
Yeah, you do it the old way. Now with these digital magnifiers, they’ve removed the distortion—you’ve got none of that curvature anymore. And because it’s digital, we can control or offer various levels of magnification. We have some devices, something like 2x to 70x. So there’s enormous amount of magnification that’s available now in these technologies.

18:15
That’s great. So I love what you’re doing here also for people who are listening, because I think when people hear the word technology they think, ‘Oh my god, I’ve got to learn all this. How can I do that, I can’t even see,’ you know, ‘I struggle with my smartphone or my iPhone. How can I find the buttons,’ etc. So from a functional kind of design standpoint, talk to us about the is it easy or easy for people to use? How’s that go?

18:49
So this, this is probably one of the largest areas we focus on as a company is the user experience. So I have grandfather that had some vision loss A few years ago, it was typical, I think it’s a very typical story. And, you know, again, in my grandfather, he had, he was diagnosed and with an eye disease, it was two years after the diagnosis that the family they became known by the family. And I found out about it two years.

19:18
Wow.

19:19
So it, you know, this is the tragedy of, you know, people that are experiencing vision loss that don’t have, you know, aren’t aware that these tools exist, and then they, they retreat. My grandfather was an avid horse better, he would read the form in the newspaper every day, you know, make his 5£ bet—you know, a five£ bet over in England—and he might win 550 or whatever and go on to the next day. Well…

19:48
That’s small print, by the way!

19:53
Newspapers are the worst example. It’s all about contrast, right? It’s not high contrast, not large print. Is all the things going against you.

20:09
So, you know, it’s very hard for people to self-identify as needing the help. And I think initially, my grandfather was kind of using my grandmother here and there to help him through it. But I think that became, you know, more and more tiresome, like, ‘Eh, I don’t really want to rely on somebody else to get me the information.’ And because he wasn’t aware of any tools to help him, he just simply stopped doing the things that he once loved. And that was the part that people began to notice and then try and investigate it. And you know, my grandpa was 88. And you can’t teach an old dog new tricks. That’s hard to do that.

So, you know, and it’s like I said it for him, it was hard for him to I think self-accept or identify as you know, ‘Yes, I’m going to have to go through some vision loss.’ And, and without the awareness of what tools are there. It’s easy to lose hope. Right. So, you know, once I found out, we started to introduce some tools, and I started with the handheld magnifier, an optical magnifier, mainly because it’s non-threatening. You know, it doesn’t have any buttons, right? It’s just you just place it over the text, and it illuminates it and magnifies it. It’s a technology my grandfather would have been aware of. And would have been intimidated by, right?

So we started him out with that. And then we introduced him to a RUBY®, which I know you’re familiar with, a RUBY® handheld magnifier manufactured by Freedom Scientific. And these come in a couple of different variants, shapes and sizes. But they’re designed to be very small, very compact, have a handle and really emulate the experience of what an optical magnifier would be. But you get the digital image, you get the contrast enhancement, and you get bright LED lights, or built into that one device.

21:50
So you kind of maybe baby-stepped it with him.

21:52
We did a baby step, yeah. We didn’t want to expose necessarily him to—I mean, you know, my grandfather didn’t have a smartphone, he didn’t have a flip phone, they had a home phone. So he had, he had no reference of technology. So we, you know, we had to take a slowest step with him. And we did and we worked and you’re familiar with a RUBY®. RUBY® handheld magnifier is one of the simplest video magnifiers. The contrast, the design, the buttons, and the controls are designed really effectively. They’re very simple to use, they’re very intuitive. Even for someone like my grandfather, who had, you know, never even picked up a smartphone, right? You know, anything with a screen would scare him unless it was the television.

So, you know, that was his life. So and then introducing that RUBY®, when we did, he began to use it. And it made an enormous difference to him, you know, being able to read again, and just generally being independent. But your point is a good one. I mean, the amount of work and effort that we put into making sure that the device is very intuitive and very simple to use.

And the end of the day, you know, it doesn’t have to be that complicated. Yes, some people do want additional tools, and more effectiveness from these from these devices that we offer. But fundamentally it’s, ‘Let’s make it a little bigger,’ so we can get that text around that scotoma. Let’s increase that contrast a little bit so it pops the letters and makes it easier to read. And then finally, let’s get some nice bright LEDs on the text. So it really makes it pop and really makes it easy to read. And once you do those things, it’s self-evident to the people using it.

23:25
So you did teach an old dog a new trick or two which, see, I think that gives people hope, because I think, look, that’s what life’s about, especially with vision loss. I mean, it’s so as you know, just being in the field and also having family member. And isn’t it ironic that, you know, I’m sure he knows what his grandson does for a living? And you know it yet it took him two years or more, right?

23:53
Well, that, you know, that’s the battle. I mean, most of my family, I’m not sure they actually know what I do. Right? They know I work in the field of vision tools, I think, I’m not sure vision loss—maybe vision loss. But, you know, these types of tools just aren’t, it’s not like you can go to a Walmart or Costco or, you know, and, and they’re on the shelf. And so you automatically have an awareness about, ‘Oh, that would be a tool. If I ever lose my vision, I can come here and buy these tools.’ Well, that that’s not how this works.

It’s fortunately, it’s a very small percentage of the population that does get impacted by this. But the people that are impacted by it, they’re not alone. You know, there is a sizable, fairly sizable audience of people that are going through this. And what that means is fortunately the people that came before you have helped define the technology to make it better. So when you are experiencing this, you’re going to get better tools.

24:44
Yep. So I want to put a fine point on what you said too when—you know, a couple more things we want to make sure that you have a chance to bring up while we’re talking on this topic. And I hope folks are learning some things that they—I’m sure they are—that didn’t know before. But where do you buy a RUBY® because the awareness needs to be raised. You go to your retina doc, and maybe your caregiver or your daughter takes you to your appointment, you get your shot for wet MacD, you go home.

Again, we talked about how there’s a disconnect with the medical providers. And you know, from my point of view, that’s going to be, that’s a definitely an area where The SupportSight Foundation is trying to make a huge change and a huge difference. So now you’re aware that there are these things out there, so but you can’t see you need to go on the internet? Where do you find them? How do you buy them? How do you try them?

25:41
Well, what I hope, you know, through efforts like this is that we make more people aware that EDA tools do exist, and just ask your doctor, because asking the doctor, I mean, the doctor is going to be the gatekeeper to this. And even if they just hand you a flyer, you know, here’s some technology that might help. And then we can kind of take it from there, you know, once someone’s been introduced to the fact that this stuff does exist.

You know, we, as I said, we’ve got these three brands that operate slightly differently in the type of technology that they have. Freedom Scientific, for example, is very much focused as a priority on kind of total blindness and tools for total blindness, so they have screen readers for a computer. So if someone’s lost, you know, all their vision, and they want to continue to use a computer, we have software that allows them to do that. And so you know, depending on the patient need, make the technology, break the technology down, into very simple elements to understand, so people can easily understand how that technology can help them. And once we’ve done that, you know that that’s kind of step one.

Step two is there isn’t just one product out there. The silver bullet, you know, you got to think about it more of kind of, ‘What tools do I need in my toolbox for me to function daily depending on what daily challenges I’m trying to overcome.’ And then what we find is there’s very specific products designed to do more specific things.

So as I mentioned earlier, a RUBY® would be a very easy handheld magnifier, that you could put it in your pocket, walk around the house with it, get it out when you need it—you could take it to the restaurant, you could take it to the supermarket. And so that process is, you know, a key ingredient.

27:22
So it’s task driven.

27:25
It’s task driven. And as a result of it being task driven, we would like to spend a little time with you to make sure what we don’t want to do is sell you something; it not work; you get frustrated, because now there’s another barrier, right?

27:36
Because, like you said, it’s not, there’s not a silver bullet. It’s individualized depending on what’s going on with your own your eyes and ears condition. And also, you know, you can’t cut a steak, you don’t want to cut a steak with a butter knife. You know?

27:54
I mean, that really is the analogy here. And so what we have to understand is, ‘Are you trying to eat steak?’ ‘What are you trying to do?’ and then from there. What we would like to do is typically the brand as I mentioned earlier, Enhanced Vision, Freedom Scientific and Optelec. The way we go to market, the way we try and support customers is regionally and locally, because we actually want to get in front of you, ideally. And we have a very large network of what we call dealers, there be representatives of all those brands.

And you know, they have all this technology readily available often in the back of a car or in the back of a van that they can wheel out, bring it onto your dining room table. You go get some examples of what you’re trying to do on a daily basis. And then we can easily pick out, ‘Okay, which products are going to help you do your banking, or you write a check, or you do your painting, or you know your crosswords,’ or what whatever it is that you are trying to do. Because one size doesn’t fit all. In that case, we have to be selective. And so that process is important.

So I would always encourage, you know, we have the dealer locator on each of the websites the brands that we have to offer, and that puts you immediately in touch with the local representation that can come out and introduce you to the basic technologies or some more advanced features on there that, again, depend on the daily needs that you have. That seems to be the most effective way because it’s more of the consultative assessment of what your challenges are, that we can then help you fit into a product that we know is going to work. The last thing we want to do is create an additional barrier to your vision loss.

29:32
Absolutely. So in summary, I think what the takeaway is in terms of pursuing what might work for them, right, you need to get out, you need to find a dealer in your state or in your region. And that’s available online at Vispero.com.

And also, you need to—it’s a process, you know. Very few people go out and buy a car in five minutes. This is a process, you have to try it, you have to see how it works for you, you know, figure it out. And it sounds like it’s one of those things, it’s like a journey, you know.

30:13
It is. And it doesn’t have to be a long journey. It only has to be a couple of steps. And just to get the best out of the technology and the fit for the individual, it’s a process worth going through. A little bit of time and effort invested up front, that way, ‘I’m doing it the right way.’ And I’m only talking about an hour or two. You can easily bring one of those dealers into your home.

Like I said, they bring all the different technology. We have a portfolio of, I don’t know, 40 or 50 different products, you know, that do various different things, whether it’s magnification and contrast—some even read the text to you as well, which is a nice option for many. It’s easy to get eye fatigue if you’re trying to do a lot of reading, so the text-to-speech comes into play really nicely.

So it’s worth doing that hour with somebody and say, you know, ‘Tell me what you’re trying to do on a on a daily basis?’ ‘What are the challenges that you’re having as a result of your vision loss?’ and then ‘Let me get some devices out,’ ‘Let me get some technology on the table, bring those examples to the table, and let’s assess which ones work best for you to overcome that challenge.’

And we rarely miss, you know, there’s always something that works. We just sometimes have to go through, you know, half an hour of figuring that out.

31:24
Yeah, figuring it out. And then you know, then there’s the training because, look, when you when you’re no matter what age you are, and what’s going on with you, when there’s something new—I mean, I get a new laptop, or a new piece of technology phone I have—you have to spend time with it. You have to practice. Somebody has to teach you, you know…

31:42
And that’s the benefit of using this dealer network. I mean, these are highly trained representatives of Vispero and the equipment that they serve. They know those products really well. They’ve seen, you know, they’ve been with other clients and patients and gone through the same process many, many times, you know. They’re very experienced. And so they can really tailor it.

And, by the way, because they’re, you know—so I’m not one for, you know, opening an instruction manual and reading it from front to back. Imagine if you’re visually impaired on top of that, and you’ve just got this new device that’s supposed to help you read, but now you’ve got to figure out how to use the device by reading the manual.

32:21
Yeah, that’s not gonna happen.

32:24
That’s why well, how do we solve that? And that’s why these dealers are so important in this process, because a) you know, their first responsibility is, you know, ‘What, what are your challenges, let’s try and figure out which technology or which product would best overcome that. And by the way, once we’ve narrowed in on that, now, let’s spend a bit of time so I can help you figure out this is how you use it, you know, this, what the button does, this is what this does,’ That part’s equally as important. And that’s why the dealers are so, so important to the process.

32:50
That’s great.

32:59
So that’s perfect. So now we’re getting the full picture here. And the last question I’m going to ask you. And then maybe just kind of wrap this up by telling us about Vispero’s philosophy—you know, the company a little more—so people get familiar with and want to check it out. But I’m sure everyone’s thinking like, are these things affordable? Does Medicare pay for it? What about that piece?

33:27
What I would say there is work going on from a Medicaid perspective. Now, there are numerous other resources that are available. For example, the most obvious one is the VA. If you’re a veteran, and you’re experiencing vision loss at all, they have wonderful programs—really unparalleled in my view—to provide the right accommodations, do the assessments, and really double-click down into those needs. But there are others. I mean, there’s state agencies around the country that have some funding models. You know, typically this type of technology might range from a couple of 100 bucks up to a couple of 1,000 bucks, and actually a little, a little higher. But again, that’s going to be really dependent on your use case.

And what I mean by that is, if you’re an avid reader, you know, you’re reading a book or two a week or more, or certainly was before your vision loss. And assuming that you’re going to want to invest in in bringing that back into your life, the type of device that you’re going to want, something with a larger screen. And typically this technology, as the screen gets bigger, because you know, it’s all about ‘how much text can I fit on the screen to help me read it and so I don’t get fatigue.’ And if you know if you can imagine for a moment you’ve got vision loss, you’re looking at a small magnifier. Great to find out, you know, what’s on the menu at the restaurant real quick, you know, 30 seconds or so. Or what the price on the supermarket shelf is. But you’re not going to read a book with a small digital magnifier. That gets old real fast.

35:00
So having the ability to display, you know, a couple of sentences potentially on a much larger screen, in a text size that you can read, is going be very comfortable, you know, over a period of time to do. So, if that’s important to you, presumably, it’s worth investing a little more to bring that back into your life. The more simple accommodations like the RUBY®, the handheld magnifiers are available for a few 100 bucks. And, I mean, the great thing about these things is they’re the type of device you’re going to keep for 5 or 10 years. Unless there’s some progressive change within your eye condition that you’d have to move to a different device, which again is another reason why those dealers regionally located around the country are there to help on that life journey.

35:52
Good. So, the point on that one, just to recap, is that it is affordable. It depends on where people are in their lives in terms of income. But I think what I really hear you saying is, the message people I hope get from a lot of this conversation is that when you can’t see, investing in a tool, investing in the technology that’s out there and accessible for you to improve your life, help yourself, be able to read, be able to do crafts, be able to do the things you enjoy, look at the pictures of your grandkids—especially now with COVID, it’s so isolating.”

36:36
Put a price on quality and your independence. You know, I think about my grandfather, and I mean, he got a small discount from me, but

36:46
Family and friends, right.

36:48
once we got the technology in front of him, you know, once that gives you your independence and a standard of quality life. I mean, he would have invested 500 bucks all day long, like, over and over again, if it meant, you know, regaining what he was able to get back. And so, it is challenging for us.

As I said earlier, the fortunate thing is, vision loss is not terribly prevalent, meaning there aren’t millions of people—actually, there are millions

37:12
There are millions.

37:15
And so, you know, we’re not manufacturing iPhones, you know, so to speak, and the volumes are so high, and the costs are so low. And I should make the point that this is all Vispero does, and all we’ve ever done. You know, we don’t have other interests and different business segments or anything of that nature; we are entirely dedicated to providing greater access for those with vision loss.

37:40
So that’s a great way to kind of segue. And this has been really informative, Richard. I think that one of the things from my chair that I would love people to know is that these devices are life-changing, and game-changing. And your family, your friends—everyone’s impacted, as we know, with macular degeneration.

And we get calls all the time at the foundation of people telling us, ‘Thank you for the information. We have an Assistive Technology guide. Thank you for that because I got one of those. And by the way, I can read my mail now, and my daughter doesn’t have to come over every two days.’ And you know, even simple things like that. So life-changing. Thank God Vispero’s out there. And we also appreciate the sponsorship of MyMacDLife.

38:35
Of course. Anything that helps increase the awareness.

38:38
So, thanks a lot for being here today.

38:42
Very welcome.

38:56
Hi, this is Christine Pedi. And I want to share with you a book that I was listening to.

39:05
It’s an audiobook. The memoir of Norman Lear. It’s called Even This I Get to Experience. And I liked the title. But I didn’t realize how much, until I got deeper into the book and he explained the title, because he used it in reference to a point in his life, where he was going through something pretty, pretty hard and pretty negative. I think it was an illness. In the middle of all of it, he thought to himself, ‘Even this, I get to experience.’ Meaning there was a certain degree of gratitude, a certain degree of wonderment.

(39:51)
And I thought to myself, you know, something is ringing a bell and it reminded me that whenever I get a new downturn in my vision, a new little portion of my field of vision that doesn’t look right, I’ll go, ‘What’s that? Wow, amazing? Look what happens, how this vibrates and that glows and…’ And I have a moment of just wonderment and look at what’s happening. Isn’t that something?

Now, of course, it’s immediately replaced with, ‘Oh my God, oh my God’—with fear and panic and dread and loathing and anxiety and, you know, you fill in all the other blanks. But maybe it took someone who I so respect to find those words—‘even this I get to experience to’—to allow me to think about what I’m going through in a slightly different way.

40:42
Because think about it, you know, if you’re going through challenges with your eyes, yeah, these are hard, and these are negative, and that they’re difficult. But these are the challenges that are going to happen in life. We get the highs, we get the lows.

41:00
These are the things that give us texture, that give our life and the tapestry of our life, the depth and give it fiber. And I just think that it might be helpful to look at it that way. Because life is full of wonderful highs, but boy, is it full of difficult lows. And yes, it’s also full of boring stuff—we get to experience it all. And if you’re going through a negative circumstance with your eyes, see if there isn’t a moment, a part of it, a portion of it, an instant of it that you can’t say, ‘Even this I get to experience.’ Because look, I’m still here, you know, we’re still here, didn’t kill me.

41:47
And he also has a wonderful way of looking at things in his life as separate lives. He was talking about being in the Air Force in World War II. It was terrible. He was not a pilot, but he was up on all the missions in these bombers, and there was death and carnage everywhere. But he never once thought to himself, oh, I could die, this could be the end of me. He never thought that he always considered it to be just one of his many lives.

He had a life as a high school student; he had a life as a Barker on Coney Island; he had a life as a kid in Brooklyn. And so this was another life, or I like to call it a chapter, he didn’t think it would kill him. He didn’t think for a minute was going to kill him. And it could have killed him.

Now, of course, going through what we’re going through with vision challenges, you know, we think it could kill us because the emotional strain is exhausting. But it’s not going to kill us. And why do we think that—I don’t want to speak for you, but I’ll speak for myself—that you know, this moment is going to lead to a worse moment or a harder moment. Maybe I should just consider what I’m going through right now as one of the lives I’m leading. And it may conclude. And then I will start another life. And who’s to say that, that life I start is not the life of somebody who totally rocks it, who totally gets a grip, and knows how to handle it.

43:24
And it no longer becomes the foremost thing in my mind. Something else takes priority over not being able to see or not being able to see well.

43:40
Why am I living in a moment and saying this moment is informing the rest of my life, period? Yes, all our previous moments do inform the rest of our life, but they are not each of them solely responsible for the rest of our life. They work together. And I found it very helpful.

And I also loved the fact, of course, that he is a television genius. He changed the face of television with All in the Family and Good Times and One Day at a Time and Maude. And I’ve respected his work and his comedy. And it’s the comedy that makes me love the fact that this funny man is also a deep thinker, because funny people usually are. So that was just sort of the frosting on the cake for me. His book is called, Even This I Get to Experience, by Norman Lear. He’s 98 years old, and it’s available wherever you get your audiobooks. Thank you for listening, everybody. I’m Christine Pedi.

44:42
So, what I’d like to talk about today is living the MacD life—living with macular degeneration. How do you maintain hope? I think it’s a very interesting question.

45:57
So, I’d like to talk about some ways of maintaining hope and it actually spells out the letters hope, H-O-P-E. Let’s talk about the H first. It’s actually a couple of H’s that I think are really important. First of all, ‘hope.’ Now under the age of hope, I think that you can think, well, I can have a bright and productive future.

Just to share with you, many years ago I was suddenly and tragically lost my wife of 32 years and I became a widower. And it was a tragic moment in my life that I’ll never forget, obviously. But during that time, as I was going through my healing journey, I remember very specifically sitting in my living room thinking, I’m sad. Now I’m grieving now, but I know that in the future, I’ll have a bright and happy life. I know in the future, I’ll have a bright and happy life. So if you’re struggling with MacD, if you’re struggling with vision loss, just know that there is hope for a brighter productive future.

Another H is ‘how’ the great thing is with technology. There’s lots of great tools that you can use in order to live the best life possible with readers and all sorts of tools that we talk about on the show. But how to help you live the best life by having tools that are provided for it through technology, in order to live the best life possible. So that’s the H.

Next is O. And under O, I like to talk about ‘orientation.’ I think one of the things you really want to think about is what are the roles of the people in your life? What are the roles of your doctors, of your nurses? What are the roles of family and friends? What are the roles that people can play? They can be your coaches, they can be your encouragers, they can be your motivation.

46:43
So in terms of your life orientation, who are people that can help you through their various roles? What roles can your doctor serve? How can he or she help you? How can your nurse help you? How can your family help you? How can your friends help you? Can you get coaching? So that’s the O, in the HOPE formula.

Then we have the P, and I think the key is really important in this particular case, because when you learn these new skills—learning new technology, for example—you have to ‘practice.’ So the key is to practice. The importance of practicing is really important to gain those new skills. And each time you try those new tools and technology, you’re going to get better at it. And then also ‘plans.’ What are your plans for treatment work proactively with your doctor to determine what can we do in terms of nutrition? What can we do in terms of exercise, we could do in terms of medication? Are there any surgical interventions or medical interventions or pharmaceutical interventions that we can use to help you get to where you need to go? So the key is having that practice and having plans.

47:48
And lastly is the E. There’s actually two E’s. One is ‘engagement.’ So there’s a lot of great organizations out there… with local and state and national vision loss resources to help you move forward. And what we found is there’s a lot of great resources out there, like The SupportSight Foundation as an example. But there’s lots of others too. So just have someone Google. If you can’t see your screen well enough, have someone Google for you to find out what are some national organizations out there that can help you move forward.

48:23
And then ‘education.’ You know, I always say that part of motivation and inspiration is education. What can you do to educate yourself? What are tools and techniques you can use to live with hope?

48:39
So, if you make this decision, even though this is a devastating diagnosis with macular degeneration—and losing your vision can be devastating—it doesn’t mean you can’t lead a great life. It doesn’t mean you can’t find joy. It doesn’t mean that you can’t live with the disability. You know, it may be your new normal, but you can live an amazing, beautiful life just by addressing hope. So hopefully that’s helpful for you. Those tips if you apply them can really make a fundamental difference in your life, living the MacD life.

49:20
So Dawn, I’m so excited about today’s Assistive Technology pieces. Do you know why?

49:23
Why, Shawn?

49:24
Because this is one I actually know about. I’ve actually met this piece of technology. And the first time I saw it, it really reminded me of like a little miniature C-3PO. It’s like science fiction because the things that it does are just unbelievable. You’re reading in different languages. And it’s just so small and compact and portable. So tell folks a little bit more about the ClearReader.

49:
So yeah, well, first of all, I’m totally psyched that you know this one—and you’re exactly right. It’s cute and adorable. And it’s easy to—you can take it anywhere in your home or anywhere you go. And it’s under the category of reader. So all it does is read, it doesn’t have a screen. And you just push a button, put a document under the camera, push a button, it reads it back to you. You can slow it down or speed it up or make it repeat. I think folks, actually, I know that this is one of the most popular devices out there. So I think a lot of our audience is going to be familiar with it. And if they’re not, they’ll learn a lot more about it.

50:39
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. 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.

51:32
Today we’re going to be talking about the ClearReader, which is an Optelec product, and this product is a portable scanning and reading unit. So what this allows you to do is take any text based material that you have, and quickly and easily scan it in, and then have it read out loud to you. This has 59 high-quality reading voices that are very easy to change. You actually can read 31 different languages with this unit. So it’s very versatile for that.

It’s an all-in-one unit as well, so everything’s there that you need. It’s got built in stereo speakers. You’ve got a headphone connector, if you’re somewhere where you should be quiet like in a library or somewhere like that. You can save documents that you scan to the unit. You have an HDMI port to output. So if you want to view the text that you are scanning and having read back to you, you can do so. There’s also a USB port and an SD memory card slot. It does have a lithium ion battery that’s rechargeable. And that’ll give you about five hours of continuous use.

It’s foldable and has a built in carrying handle. This weighs just under five and a half pounds—it comes in at 5.4 pounds. So it’s fairly lightweight. And you can customize everything on there as far as the volume and the speed of the text being read back to. And if you do plug it into an external monitor, you can actually customize the color and contrast of that as well.

I think thing that people like the most about this is that it is an all in one unit. And I’ve got a lot of friends of mine that are totally blind that actually use this because it’s very simple and easy to use, just has a few buttons so it’s not very complex to learn. Bill, How about yourself? Have you had any customer feedback on this unit?

53:21
Well, the customer feedback that I’ve gotten on the ClearReader is very positive. I think the first thing that stands out about the ClearReader is it reminds you of any other consumer electronic device in your home, it kind of reminds me of a Bose radio. So it’s a nice looking device. I don’t think anybody would suspect that this was a scanning and reading device to aid somebody with vision loss. And the other great thing about the ClearReader is just how we how easy it is to use, you’re basically just putting a piece of paper up against the unit itself, pressing one button, listening to a tone, and then listening to the person read back that information.

The other thing that’s really great about the ClearReader in some of our other scanning and reading devices, is that it is multilingual. So I’ve had many occasions where the people that I’m showing this to might speak a second language, they might get a newspaper or a periodical in a different language. So maybe you know, most of the stuff they scan is in English but they might be scanning and reading a periodical or document that might be Italian, French, German, Polish, etc. So it’s versatile for those individuals that want that level of flexibility. And again, I can’t underscore how easy it is to use. You don’t need to be a computer centric person. In order to use it. It’s plug it in or turn it on. This one is battery operated, and then start scanning and reading and listening.

55:00
It’s a great product to you know, remain independent. You know, I’ve got to say I just actually sold one of these to a friend of mine that was wanting to cook more with everything, being kind of quarantined at home. And she was having a hard time reading her recipes. And you know, scanning in something like a recipe can be very difficult because you’ve got pictures of the final product. And in these cookbooks often times you’ve got kind of a list of the ingredients and the measurements, and then the instructions in a separate area. And this does really well at figuring out what’s on the screen and what order it should be reading things in.

So she was really impressed with it and ended up purchasing it just for reading recipes. And I should say the price on the ClearReader+ is $1,995 retail price. And if you want to learn more about it, feel free to check out our website@www.vispero.com. Or give our customer service team a call. They’re always happy to help. They’re at 1-800-444-4443.

56:15
Hey, everyone. Thank you so much for spending time with us today. We’re really glad you’re here. Please come back. 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 MyMacDLife.

56:38
This program is empowered by The SupportSight Foundation. The SupportSight Foundation’s mission is to save sight 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.

57:22
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.

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 podcast. Until next time, keep living with hope.

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

 

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