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MyMacDLife - Macular Degeneration Podcast
16 minutes | Sep 1, 2021
Summer Session 10: Tool Time
My Mac D Life discusses everyday tools that can be used to navigate life with Macular Degeneration.
28 minutes | Aug 25, 2021
Summer Session 9: Sue Labar-Yohey Gets Personal
Psychologist and writer, Sue Labar-Yohey, shares a personal story of her macular degeneration diagnosis and how writing helped her process her diagnosis and led to her connecting with others through her blogs. Sue discusses Apellis-2 and advancing research on treatment for AMD.
28 minutes | Aug 18, 2021
Summer Session 8: How Is My Macula - Dr. Stambolian
My Mac D Podcast is joined by Dr. Stambolian. Dr. Stambolian describes how they are taking a new approach focusing research on human eye tissue to better understand what makes a normal macula different from other locations in the retina. Their goals, he says, is to develop better treatments and work on finding a cure.
30 minutes | Aug 11, 2021
Summer Session 7: Doctor's Orders: Navigating Macular Degeneration
MyMacDLife interviews leading retina specialist, Dr. Timothy Murray. Dr. Murray offers details and information surrounding macular degeneration and new potential treatments. He provides tips and strategies for patients and their caregivers, including key questions you should be asking your doctor.
57 minutes | Aug 4, 2021
Summer Session 6: Past conversations with Christine Pedi
My Mac D Life revisits past conversations with Christine Pedi. Christine Pedi is an American television and theatre actress, cabaret performer and radio personality. Christine shares her adventures as she navigates through the world with diminished vision while trying to get a better understanding of herself and the world.
30 minutes | Jul 28, 2021
Summer Session 5: Let's Talk About Vispero
Bill Kilroy and Michael Wood join My Mac D Life to talk about Vispero's Topaz Ultra and the Clear View C. Vispero is the world's leading assistive technology provider for the visually impaired.
27 minutes | Jul 21, 2021
Summer Session 4: MyMacD Life - Mailbag: Your questions Answered
My Mac D hosts take a peek into the mailbag to answer common questions surrounding Mac D that were sent in by listeners.
20 minutes | Jul 14, 2021
Summer Session 3: Public Health and Policy
My Mac D is joined by Kira Baldonado. She is the Vice President for Prevent Blindness. She oversees the development and implementation of the organization’s public health and policy agenda, working closely with affiliate offices and partner organizations across the country.
28 minutes | Jul 7, 2021
Summer Session 2: Low Vision and Vision Rehabilitation
Dr. Erin Kenny joins My Mac D life to discuss Low Vision and Vision Rehabilitation. She is Chief of the William Feinbloom Vision Rehabilitation Center
29 minutes | Jun 30, 2021
Summer Session 1: Low Vision International
My Mac D is joined by Chris Caswell. He is a part of Low Vision International in Växjö, Sweden. LVI's mission is to make every day easier for people with visual impairments, LVI develops, produces and sells visual aids with high standards for reliability, simplicity and serviceability.
57 minutes | Jun 15, 2021
The Importance of Audio Production and Consumption for the Sight Impaired
On This Episode The episode opens with Dawn Prall and Audivita Studios founder, and MyMacDLife production partner, David Wolf. They discuss the relationship between Audivita Studios and MyMacDLife as well as exchange views on the rise and importance of audio production and consumption. David shares his journey in the creative field; his love of audio shines throughout, specifically creating visual experiences in the mind of the listener. They then introduce the speakers for the next segment. Voiceover actors Kim Monti and Steve Corona join the conversation and explain audiobook narration. They begin by providing a brief background on their paths to voice acting and answer questions about the challenges, techniques, and physicality of their work. Kim then tells a story about the freedom and independence audiobooks offer to those with vision loss. Audiobooks allow you to listen on your own time, removing the need for someone to read to you. There is a vast range of audiobooks; you can explore almost any subject in the world. The conversation continues as Kim and Steve share their experiences with character development and how they keep multiple character personalities organized while recording. The interview transitions to David, Dawn, Kim, and Steve verbalizing the importance of stories and the innate nature of storytelling. This entertaining conversation concludes with lightening round questions for Kim and Steve. The episode finishes with Bill Kilroy, Vispero’s Senior Sales Director for the Northeast and Mike Woods, Strategic Accounts Manager for Education, discussing the DaVinci Pro, a larger desktop unit by Enhanced Vision. This high-performance desktop video magnifier has a 3-in-1 high definition 1080p camera, ensuring a crisp, clean, high quality image on the 24-inch monitor. This device has two levels, the DaVinci HD and the DaVinci HD Pro. While both have OCR functions, the functional difference lies in the OCR capability. You can go online www.enchanedvision.com to see videos on the device and learn more about the product. What We Discuss in this Episode This tenth episode covers the following featured topics: We're freeing people from screens, pages, anything visual. We're giving them a choice in how they consume content, for the sighted population. But for those that are visually impaired, or can't read it all, audiobooks are amazing in that they're an inclusive medium. (10:59) There needs to be vocal separation, you need to be able to tell the characters apart. So that's everything from gender to accent, pitch, pacing, tone, all of it. We spent a lot of time going through and developing the characters. There's also the more daunting part, for me anyway, is putting the list together of all the words that we need to make sure we're saying correctly. (18:50) I just always try to make every story that I tell, every book that I voice, be so vividly expressed through my voice that you can see it anyway in your mind's eye, whether you have vision or not. You should be able to, if you have good vision, and you close your eyes, you should be able to see that picture just as vividly. I always aim to bring that mentally visual picture telling, with my narration. I go very deep in my in my visualization, Kim knows this. I'll do exercises where I close my eyes, and I become these characters. I can see and feel and smell and taste and hear everything that's going on in their world before I jump into it. Then I start narrating, and I'm there. So hopefully I can pull you in with me. That's always my goal. (35:40) I don't know if people understand how deep storytelling goes. Storytelling, vocal storytelling, is the first media of communication. If you ever want a classic example, listen to a two-year-old tell you how they stub their toe or got their booboo. (36:58) If you've got a page of text that you want to have this product scan in, the DaVinci Pro can scan that and then read it out loud to you in multiple voices. You can customize the voices, whether you want male or female, you can change the speed of that, really customizable. When you're magnifying, you've got a 24-inch monitor. It’s widescreen 24-inch magnification, which allows you to get up to 77 times magnification, that’s pretty high-powered. You can use that to do your magnification, change the color contrasts. You've got 28 different viewing colors, so if you want to use black on white, white on black, you know, yellow, one black, you name it, there's 28 different color combinations that you can use. (49:16) Quotables “There's also, and I've observed this as a producer, there's an intimacy about audio, it's a very primal thing to have stories read to you, it's the first thing your mother did, for example. It's a very primal kind of way to experience story and narrative.” – David Wolf “The thing I like about audiobooks is, whoever you are, you can create what the character looks like. You get the basic description from the author, but you decide how tall the palm trees are. You decide how green the grass is, or if you live out in the southwest, not green the grass is. You paint these pictures.” – Kim Monti “…you were talking about why audiobooks are becoming a huge thing. I think part of it too, is it's sort of harkening back to that golden age of radio…” – Steve Corona “…it's like the theater of the mind because you're visualizing everything that you can't see because it is only audio.” – Steve Corona “They said that it [audiobooks] is so freeing, and they don't feel like they are dumbed down. People sometimes feel, and I had a friend tell me this, that when her eyesight went away, and hers one way very abruptly, there was no gradual it was lights on lights off. She said she felt like she had to stop learning because she didn't know how else to get the information.” – Kim Monti “This is storytelling at its finest, it is that innate. You have a two-year-old that will give you strong storytelling. It was only after storytelling that they start painting pictures on the cave walls. Storytelling came first. This is why it grabs people.” – Kim Monti Recommended Resources - https://audivita.com/ - http://www.supportsight.org/ - http://www.mymacdlife.org/ - https://vispero.com/ - https://www.freedomscientific.com/ - https://www.enhancedvision.com/ - https://www.enhancedvision.com/low-vision-product-line/davinci-pro.html - https://us.optelec.com/ - https://www.healthyvisionassociation.com/ - https://www.novartis.com/ - https://www.centricbank.com/ - https://hinklestein.com/
61 minutes | Jun 8, 2021
Peripheral Vision and ‘Ears to Eyes’ Strategies
The episode begins as Dawn Prall interviews Ilana Yellen from Evoke KYNE about their recent work on AMD Central. AMD Central is a brand-new resource website created to provide verified, trusted, educational information to those effected by MacD. AMD Central was created by the leading organizations in the macular degeneration field: The SupportSight Foundation, BrightFocus Foundation, MD Support, Prevent Blindness, and the American Macular Degeneration Foundation. With the primary goal of user ease and accessibility in mind, the site itself is designed to be functional; colors and font sizes can be tailored to those who have vision loss. Ilana then goes on to speak about her growing awareness of the AMD community through this collaboration and explains new projects at Evoke KYNE. Co-hosts Dawn Prall and Shawn Doyle then share a quick tip for those with MacD. They suggest practicing using peripheral vision and ‘ears to eyes’ strategies, which can be useful for any stage of central vision loss. The show continues as Dawn interviews fellow AMD Central founders, Matt Levine from the American Macular Degeneration Foundation, and Dan Roberts with MD Support. They highlight key features of the site, such as the Starter Packs to guide those new to the MacD community through basic information. They then share their experiences of coming together to form AMD Central and further converse about this exciting and revolutionary collaboration. Next, Dawn Prall interviews The SupportSight Foundation board member, Dr. Robin Smart. Dr. Smart tells a personal story of the lasting influence of her grandfather and how MacD has affected her family through generations. As an advocate for education, Dr. Smart relates the importance of information sharing tools, such as The SupportSight Foundation and explains her commitment to the organization. Finally, the episode concludes with Vispero’s Bill Killroy, Senior Sales Director for the Northeast, and Mike Woods, Strategic Accounts Manager for Education, discussing the benefits of the Compact 6 portable video magnifier. This durable, intuitive, high-tech device has OCR, and Bluetooth capability, meaning it can read text aloud or can mirror cast text to an even larger device, such as a TV. You can even customize the contrast colors via the easy-to-use touch screen for your personal needs. What We Discuss in this Episode This ninth episode covers the following featured topics: This is a collaboration, which makes it really unique and exciting, of key macular degeneration organizations who provide patient education, who worked really hard on funding the research to find a cure, or new treatments for macular degeneration. We've never come together before, like we did with this amazing collaborative project. So, it's pioneering in that regard. (6:17) AMD Central, it's a website. It's an online resource, and it curates trusted information and support tools from leading patient advocacy organizations, as Dawn mentioned, the five that we just went through in one convenient accessible spot that helps people with AMD really live their best lives. Everything's just all in one place to make it super easy for people to access. The site itself is designed with their needs in mind in terms of functionality, colors, font size, everything is really tailored to people who have vision loss issues. (9:02) The Starter Pack is something that we develop for people who might be new to the AMD community. There are some key pieces of information that help you manage and understand the disease a little bit more and kind of cover a range of different things. (11:41) The SupportSight Foundation is a founding partner to AMD Central. I'm very proud and humbled to be part of that and to be in this group with my esteemed colleagues. I can't say it enough. Thank you to all of them and their hard work. Thank you, Ilana to you and your team at Evoke KYNE. The call to action here is tell everyone you know, AMDCentral.org. Go to it, check it out. We've gotten a lot of social media on it, go to the website, and you'll see all the various organizations who are involved in it, check them out, click on them, learn more about them, because they are champions for you, and champions for the disease and champions for education and patient education. I can't say that loud enough from the mountaintop. (17:51) This website, AMD Central, has a wide range of resources. That alone is what sets it apart. It's got clinical details about the condition, has got practical advice for living with it. It was developed with the accessibility needs of the community in mind, it's a very friendly site. And again, that's because of the creative ideas of all of the founders. The visitor can actually change the display settings to suit their vision and their needs. It's available both for desktop and mobile platforms. A lot of the resources are available in trance and audio. I just can't think of anything that we forgot about. We even have some materials in Spanish. (31:03) I remember my grandfather referring to his vision loss as his eyes were going bad. One of the things that I think he regretted was the fact that he could not read independently, he was a voracious reader. In fact, when I was in college, I used to come home once a month. What I would do over that weekend is I would then read to my grandfather. (43:56) I need to point out to folks that macular degeneration is genetic. It can be hereditary. It doesn't have to be, there's varying research, but I'm going to just say this out loud and publicly that there is data that shows that if one or both of your parents has or had it, you're three times more likely. What you just said, proves that it runs in families. (45:44) It's like having a mini mini mini iPad in front of you. You press the screen, and you can raise or lower the magnification, you tap an icon for high contrast, and you can change your color combination so that you can view the information that's more tuned to your eye condition. If you need high contrast, white on black, black on white, yellow on blue, those types of things. It's all built in. And again, the versatility is great. Because when you're done with it, put it in your pocket, or put it in your purse, your backpack, and just on to the next place. (56:20) Quotables “One of the things we do on MyMacDLife is we want people to better understand that there's a lot that goes on behind the scenes, there are all kinds of people out there who are working really hard to help them know more about their macular degeneration, to understand more, to learn more, you know, that's the purpose of MyMacDLife. That's the purpose of what AMD Central is.” – Dawn Prall “I think that's the thing that I really want people to understand is that we're empowering people with accurate information.” – Dawn Prall “Even though we're friendly and work together, in my mind I thought, ‘Wow, what a great idea.’ But I also simultaneously thought, ‘Wait a second, how is how are these organizations that we're going to each contribute to something that will, in its sum, maybe offer something better than each of them individually offers?’ But the reality of it is all of these organizations are there for patients. That's our focus. So, we set aside any bit of our competitive natures with what we're doing creatively, or however you want to measure our competitiveness. We're really all there for patients. That's I think why we all joined. We created this really incredibly powerful tool that will only grow I think.” – Matt Levine “I thought to myself, ‘This disease is bigger than all of us.’ And quite frankly, I'm a little tired of not being able to work together in a way that really serves, as Matt said, the public the patient, education, the caregivers, but what can I do to lead by example?” – Dawn Prall “I think another thing that ties all this together is the element of trust. Because each of these organizations came into being solely for the purpose of improving the lives of those affected by macular degeneration. Each one of them is a trusted source of information in and of themselves. When we all came together, we each vetted all the information that's on there. So, it's like double vetted trusted information. You're not going to a website, which at the end of the day is actually trying to sell you their nutraceutical. That's not what we're doing. We're just giving you unadulterated essential information.” – Matt Levine “He didn't just lose his vision. We all lost something, you know, we all were affected by the impact of the disease.” – Dr. Robin Smart “… we often talk about how important it is to have someone, a loved one, a family member, someone in your life who is your eyes and that's not an easy role to play.” – Dawn Prall “MacD affects so many people, young and old, and as someone who believes in education as the great equalizer, who believes in research and the positive effects and outcomes that research can have on the lives of people, I am committed to working with you and the foundation because you have a commitment to changing the lives of people with MacD for the better.” – Dr. Robin Smart Recommended Resources - https://amdcentral.org/ - https://www.evokekyne.com/ - https://www.brightfocus.org/ - http://www.mdsupport.org/ - https://preventblindness.org/ - https://www.macular.org/ - http://www.supportsight.org/ - http://www.mymacdlife.org/ - https://vispero.com/md s - https://www.freedomscientific.com/ - https://www.enhancedvision.com/ - https://us.optelec.com/ - https://us.optelec.com/products/compact-6-hd-speech.html - https://www.healthyvisionassociation.com/ - https://www.novartis.com/ - https://www.centricbank.com/ - https://hinklestein.com/ - https://maculardegeneration.net/ - https://mymacularjournal.com/
50 minutes | Jun 1, 2021
Creating a Care Map for Living With MacD
On This Episode Co-hosts Shawn Doyle and Dawn Prall begin the episode with the idea of creating a care plan for a macular degeneration diagnosis. This care plan can be used as a map to live with the disease and manage fear and adversity. They encourage not only those with MacD, but caregivers and loved ones, to find information centers, support systems, and strategies to navigate life with vision loss. If you’re not a planner, they discuss how to get started. In the next segment, Dawn interviews Mark Greget as the episode’s featured special guest. Mark Greget is an Assistive Technology pioneer and CEO and founder of NuEyes. He tells Dawn about his career journey, passion for helping others, and the empowering ability of Assistive Technology. Mark also brings forth the importance of relationship building, especially with doctors and retina specialists, in the distribution process. Through communication and trust, Mark successfully partners in the medical sphere to provide NuEyes Smartglasses to patients. NuEyes is a technology company that uses augmented reality Smartglassesto change lives within a matter of minutes. Mark introduces their Smartglasses, the e2 and e2+, which have variable magnification, contrast, text to speechcapabilities, and digital accessibility, meaning you can stream television, movies, and check your email without having to change contrast or magnification. The episode ends with the Shawn and Dawn exchanging views on the importance of using magnification products correctly, a process which involves practice and being patients with oneself. They conclude with an entertaining round of Eye Trivia and information sharing on additional resources. What We Discuss in this Episode The seventh episode covers the following featured topics: “…if you're diagnosed with macular degeneration, instead of just being upset or grieving or being sad, why not come up with a strategy? So, in other words, an action plan, a strategy, a map, whatever to navigate through your diagnosis and to navigate through your life.” (2:49) “Assistive Technology is something that's really enabling somebody to deal with what they have in a positive way. It's a positive way but it's empowering somebody. It's really changing somebody's life for the better where they can go to school they can go to work; they can see a loved one's face. It's these almost immediate reactions of Assistive Technology empowering somebody to go out and do and hopefully do what I'm doing.” (15:05) “NuEyes, we are a technology company that is using augmented reality Smartglasses, or inventing new versions of augmented reality Smartglasses, to help different verticals and different passions of ours, from the Assistive Technology space, low vision space, to the medical space…” (19:25) “They put those on their head, these are glasses, folks, by the way, it's a computer on your head. You put them on, and somebody says, ‘Oh my god, I can see my husband across the room, and I still want to be married tohim.’ I swear to God, somebody said that to me.” (20:07) “One of the things that that we get all the time, every day, is, ‘Well, why doesn't my doctor know more about the device or know more about what's out there for me? Why aren't they connecting that?’ So speak to that a little bit with because I think that doesn't make sense to our listeners to people who are not us who are not on the inside? They see a huge disconnect.” (23:00) “An AI component or artificial intelligence component that we patented and granted for optical character recognition on a pair of augmented reality Smartglasses. So really, what that means is you can push a button, and it'll read back to you in real time, instantly.” (27:44) “At the end of the day, we're experts in user experience because of the consumer group that we're in. So for us, we really landed on Smartglasses.They're a little bit smarter than my coke bottle glasses I wear every night. It’s really like you said, a computer on your face. Luckily, it's getting lighter, smaller and less expensive. That's really where we started in 2016, with the NuEyes Pro.” (30:13) “I think it's really critically important to learn to use your magnification products correctly. A lot of people think, you pull out a device out of the box, you hook it up, you plug it in, push go, and boom, right. It doesn't really work that way in real life. What really is important is that you have to realize that it takes practice and patience. I've seen my wife make remarkable progress with her reader, because she was willing to practice and take her time with it, and to have patience. Now on a daily basis, it's reading documents, all sorts of amazing things that's really changed the quality of her life by being able to use those readers. But it did take practice and patience in the beginning.” (45:54) Quotables “If you're telling people what they want, you're going to go out of business, if you're listening to what people want, then you're going to be successful.” – Mark Greget “…it's about helping people who can't see or who are losing their precious vision understand there are tools and technology out there that's accessible, usable.” – Dawn Prall “I think at the end of the day, we are we are a technology company. But most importantly, we're an advocate. We will not stop, we will not quit inventing technology for the visually impaired. This is more than just a business. This is more than just an idea. This is a passion. To be able to change somebody's life with our glasses is super humble and super appreciative. That’s why we get up in the morning every day and deal with deal with crazy stuff.” – Mark Greget Recommended Resources - https://www.nueyes.com - https://www.nueyes.com/nueyes-e2 - https://www.nueyes.com/nueyes-pro-3 - https://amdcentral.org - http://www.supportsight.org - http://www.mymacdlife.org - https://vispero.com - https://www.healthyvisionassociation.com - https://www.novartis.com - https://www.centricbank.com - https://hinklestein.com
60 minutes | May 18, 2021
The 'Burden' of Asking For Help
On This Episode Co-hosts Shawn Doyle and Dawn Prall begin the episode with a discussion on asking for help. Asking others for assistance can make you feel like a burden, but it’s an important skill to practice. Dawn brings forth the idea of people asking for help in all type of situations, such as customer service or dealing with a broken leg. We all need assistance at times and those who are helpers often get joy from giving aid. Shawn and Dawn then exchange views on gender roles and how they affect perceptions and vulnerability in needing help. In the next segment, Shawn interviews psychologist and writer, Sue Labar-Yohey. Sue shares a personal story of her macular degeneration diagnosis and how writing helped her process her diagnosis and led to her connecting with others through her blogs. With the assistance of Linda Moore, they created a popular Facebook group for those with MacD to connect and find educational resources. Sue goes on to share her views on why it’s the best time in history to go blind. She then explains Apellis-2 and advancing research on treatment for AMD. Shawn and Sue’s interview echoes the earlier conversation regarding asking for help. Sue’s top advice for those with MacD is to find acceptance and go ask for help. She reflects on acts of service as well as happiness created from supporting others. As an avid skier, cyclist, and dog-walker, Sue wants those with MacD to not be limited in their diagnosis, to find ways to be themselves, and to find gratitude in what they can do. Next in the episode, Dawn and Shawn provide tips for living with MacD. They describe how to practice using peripheral vision and ‘ears to eyes’ strategies. These suggestions are useful for any stage of vision loss. The episode concludes with information about the omniReader® from Vispero’s Bill Killroy and Mike Wood. The omniReader® is a lightweight, portable, scanning and reading device. The omniReader® has multilingual capability and you can customize the speed of the voice, the voice language, the size of the font, and the coloration of the font. The lightweight and durable product also has a handle for easy transportation. What We Discuss in this Episode This eighth episode covers the following featured topics: “…a lot of people that I talked to say, ‘I would like to ask for help, but I don't want to be a burden to someone else.’ If I ask someone for help, let's ask you, Dawn, for help. If you help me, I'm not actually creating a burden for you. I'm actually creating joy for you because most people who are the helpers say, ‘It makes me feel good to help someone else.’ Even though you're helping me, Dawn, you're actually helping yourself, because you feel good about giving back to the world or to your community or to your neighborhood, or to your friend.” (2:58) “…I think it's hard for women to ask for help, because we're supposed to be able to do everything. But it's also difficult, and you tell me, I have lots of men in my life, happily, unhappily. But men don't like to ask for help, either because I believe that society sees it as a weakness.” (7:40) “I mean, when I met my optometrist, when she first told me I'd have to stop driving, and that, this is only going to get worse girl. I said, ‘Well, how am I going to get anywhere?’ She goes, ‘Ask.’ I said, ‘I don't want to be a burden.’ And she says, ‘Oh, god, no, you're not going to be a burden. One of the things that makes people happy is doing for others.’” (25:25) “It's Apellis-2…basically, they put a shot in your eye. Don't worry, you are very, very, very numbed, at least I don’t feel it. It is slow, it is taking a piece, a domino, out of the complimentary system. The more and more that they look, macular degeneration is an autoimmune problem. It's your body attacking yourself. That's part of what they call the compliment immune system. The compliment immune system is ancient. It is in all sorts of animals going all the way down to like lizards and everything. It is a chain reaction, a long series of dominoes. What they're doing is that knocking out a domino in the middle to slow down the chain reaction. Is that layman enough?” (32:18) “This is the best time in history to be going blind. You have more opportunities; you have more help. You have more research than they've ever had before.” (42:38) “Here's a practical tip for living with macular degeneration: learn to use your eyes more efficiently, learn to use a more peripheral part of your retina to see more clearly.” (44:49) “This product is basically a portable scanning and reading device. This will take any text that you have and convert it to audio output. If you're looking to read a newspaper, read your mail, easily just put that underneath this unit. This unit has a built-in screen; it's got a 10-inch screen on it. If you want to see the material that you're reading, you can enlarge it. You can change the font coloration if you need high contrast, and you can also plug in your headset.” (49:30) Quotables “Asking for help actually is part of being humble. It says that you don't know everything, and you cannot do everything, because nobody can.” – Dawn Prall “Most people, 99.9999999% of people, if asked for help, will say, ‘Sure, what do you need?’ And it's amazing.” – Shawn Doyle “I still ride my bike. One of the farmers around here stopped me the other day and goes, ‘You know you can cross country ski over my fields if you want to.’ So I'll probably go skiing this afternoon. I walk my dogs every day, or every day the weathers decent. Life is not over.” – Sue Labar-Yohey “People think that they're giving up their lives, they're giving up their identity, but you're not, you just get it in a different way. You just work differently to try to get who you are.” – Sue Labar-Yohey “Don't cut yourself short. Try to still be yourself as much as you possibly can. You'll find people to help you, you will.” – Sue Labar-Yohey Recommended Resources - http://www.supportsight.org/ - http://www.mymacdlife.org/ - https://vispero.com/ - https://www.freedomscientific.com/ - https://www.freedomscientific.com/products/lowvision/omnireader/ - https://www.enhancedvision.com/ - https://us.optelec.com/ - https://www.healthyvisionassociation.com/ - https://www.novartis.com/ - https://www.centricbank.com/ - https://hinklestein.com/ - https://maculardegeneration.net/ - https://mymacularjournal.com/ - https://www.facebook.com/groups/mymacularjournal/ - https://health-union.com/
69 minutes | May 3, 2021
The Importance of Doing While Losing Your Vision
On This Episode Co-hosts Dawn Prall and Shawn Doyle begin the episode with a conversation about being a doer, specifically, the importance of doing while losing your vision. Dawn and Shawn provide tips for modifying activities, such as exercise. They highlight the positive physical and psychological benefits of being active. The conversation shifts to experiences while running errands and the helpfulness of Assistive Technologies. The co-hosts then ask listeners to write in and share their tips and tricks for being a doer with MacD. In the next segment, Dawn interviews co-host Shawn Doyle as the episode’s featured special guest. The conversation begins with Shawn sharing advice from his parents that shaped his career and outlook on life. Shawn’s passion for providing tools and techniques to help people succeed is featured throughout the interview. He goes on to discuss his career mentor, the blessings of Assistive Technologies, negative mindsets, and remedies for a bad day. Dawn and Shawn then exchange views on the book Grit by Angela Duckworth. They build off Duckworth’s definition of grit to include environmental factors – such as relationships. The hosts then provide a visual analogy of grit to gravel and the importance of getting back up after a fall. Actress, singer, voiceover artist and SiriusXM radio show host Christine Pedi recounts lessons learned from reading Even This I Get to Experience by Norman Lear. In this segment, we hear about the concept of “next” and viewing the “next” as an opportunity. We are encouraged to stay in our present moment and to stay open to lessons we may learn in unexpected places. The podcast moves on to 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. In this episode, Bill and Mike introduce the Transformer, a portable, three in one, high-definition camera. The Vispero duo highlight key features, such as a range of magnification and contrast settings and an OCR option that can convert print material into an audio book for the user. Other episode highlights include a discussion about Tom Brady’s book The TB 12 Method, specifically touching on his commitment to excellence through training and nutrition. Dawn and Shawn relate commitment to health as an investment in a future self. The episode concludes with a fun trivia game played by co-hosts, Shawn and Dawn, and information sharing on additional resources. What We Discuss in this Episode This sixth episode covers the following featured topics: • “Lots of people with macular degeneration - it depends on where they're at with it early, mid right in stage advance - can still do stuff. Let's talk about doing the stuff you need to keep doing, because you got to keep doing or you're going to give up.” (4:09) • “I think stagnation is dangerous because it's not a natural human condition. When people stagnate, they lose their health, they get worse.” (4:26) • “Exercise releases a lot of endorphins and lots of other chemicals that make you more optimistic. There's a physical benefit, but there's also a psychological benefit.” (5:14) • “Don’t be afraid to ask someone, ‘Excuse me, could you help me grab that on the shelf?’ or, ‘What does this say?’ because I find that generally speaking, most people are nice, and are willing to help if you ask for help, which we've talked about before.” (8:16) • “I was raised in a household where I was taught by two remarkable human beings that anything is possible. When we fast forward into my life as a trainer, speaker, executive coach, and author, I think I've just kind of continued that path, not only for me, but to teach other people that you can do anything in your life as long as you're willing to do the work. I provide people the tools and techniques to do that.” (12:42) • “The single biggest asset that you have, and I'll add to that, it's not the trucks in the building and the products and all this other stuff. It's the underdeveloped potential of your people…if you can harness the underdeveloped potential of people, and they want to grow? It’s unbelievable what can happen.” (19:10) • “…people say all the time, ‘how can you be motivated at a time like this?’ All of the turmoil that's going on in our world, all that bad news you see on the media, but we live in an amazing world, in terms of technology. Someone being able to turn on their computer, you control the computer without using a mouse, just purely using vocal commands, or be able to magnify something, or change the mean, it's just unbelievable, compared to say, Helen Keller's day, you know where there wasn't the technology available to her. Now there's so such great technology available. We're very blessed to have that.” (21:20) • “Constantly consuming positive, as an antidote to the negative. I call it the Bad Day Prescription if you will.” (26:09) • “…grit is a combination of passion, and perseverance.” (30:39) • “You plan, God laughs. So, you can prepare for what you hope the future will bring. You know, pay your bills, walk your dog, take your vitamins, call your mother. But the minute you assume that things will work out in a certain way, then you are setting yourself up. You don't have any control over any of it. Especially if you have vision issues.” (37:45) • “That's probably the key lesson that I pulled from that whole story was, no matter what your life is like, if you really commit to a healthy lifestyle of nutrition, it's going to fuel you to be better…” (45:49) • “I think that we all make choices, yes, none of us are perfect. We're all blessed with the talents we have, with the strength we have, with the attitude, with the winning. Nutrition is a part of that, a big part of that. I think one of the things that we try to do with this show and on the website and the SupportSight Foundation is help people learn and educate them about how important all of that those pieces are, with or without MacD. You are what you eat.” (47:29) • “The Transformer is a portable three in one high-definition camera, that actually can be a multi camera system, that you can connect to a standalone monitor, you can connect it to your laptop, MacBook, iPad, or Chromebook. It’s a three in one camera.” (58:13) Quotables • “Growing up as a child, my dad and mom always said, always, always, always said, you can do anything if you put your mind to it, as long as you're willing to do the work. I love that caveat, right? It wasn't just you could do anything, magically wishing it. It’s as long as you're willing to do the work.” – Shawn Doyle • “If you're gritty, you can pull whatever you have to from places inside you that you never thought were there. And in things that you never thought existed. And you can pull them up when you need them. And you dig really deep down inside and then you use it.” – Dawn Prall • “The fact that human beings learn so rapidly makes room for lots of amazing possibilities.” – Shawn Doyle • “…you never know where you're going to find an answer or find an inspiration, so keep on looking. Keep on reading, keep on listening, keep on talking to people, it could be somebody that you're talking to at the bus stop. You don't know what kind of words of wisdom out there will suddenly just make you do a complete 180 on way of thinking.” – Christine Pedi Recommended Resources - https://shawndoyletraining.com/ - http://www.supportsight.org/ - http://www.mymacdlife.org/ - https://vispero.com/ - https://www.freedomscientific.com/ - https://www.enhancedvision.com/ - https://www.enhancedvision.com/low-vision-product-line/transformer-hd-portable-electronic- magnifier.html - https://us.optelec.com/ - https://www.healthyvisionassociation.com/ - https://www.novartis.com/ - https://www.centricbank.com/ - https://www.steinandassociates.com/
58 minutes | Mar 18, 2021
Finding a Cure for MacD - Hear from Top Vision Scientist Dr. Stambolian
On This Episode Hosts Dawn Prall and Shawn Doyle begin the episode conversing about a topic that has been on their minds. This episode, Shawn wonders about the thought process of a person who considers themselves as disabled versus someone who does not. He mentions how people who think positively heal much more often than people who don't, as well as the impact changing language has on the mindset. Dawn builds on these thoughts by speaking to quotes on how “you are or aren't what you think about all the time.” Shawn closes out the segment by suggesting people with MacD consider saying they have a condition and not a disability, which causes them to have to do some things differently. In the next segment, Shawn interviews Dr. Dwight Stambolian, who is an ophthalmologist, researcher and faculty at the University of Pennsylvania, beginning with his medical and research background. Referring to himself as a “physician scientist,” he relates how in medical school he was interested in both research and clinical work and was invited by a University of Pennsylvania professor to obtain his PhD. He then completed his ophthalmology residency and remained as a faculty member since his first appointment. He goes on to explain how he began focusing on MacD in 2000 with clinical research within the Amish and African-American communities in Pennsylvania. Next, they discuss Dr. Stambolian and his research team’s current MacD research and having recently received a research grant from The SupportSight Foundation. Dr. Stambolian describes in lay terms how they are taking a new approach by focusing research on human eye tissue to better understand what makes a normal macula different from other locations in the retina. He elaborates on how they also are comparing eye tissue from donors with no disease and others who have MacD, to seek differences between the two. Their goals, he says, is to develop better treatments and work on finding a cure. Shawn and Dr. Stambolian also discuss in detail the clinical trial process to help listeners understand what goes into developing a drug, including length of time, such as for MacD. For example, Dr. Stambolian adds, it can take 10 years of research and clinical trials before a medicine actually gets to the patient. He then outlines the three phases of clinical trials designed to determine the effectiveness of new drugs. They conclude the segment on a hopeful note discussing the many advances in MacD treatments since the 1980s, in addition to the ongoing and continuous research on a cure for macular degeneration. The podcast continues with the regular featured segment with Vispero, the world's largest Assistive Technology for the visually impaired serving people who are blind or low vision. Throughout the podcast, they highlight Vispero products that can enhance people's lives. In this episode, Bill Kilroy, Senior Sales Director for the Northeast, introduces the brand Freedom Scientific’s Topaz line of desktop video magnifiers. He details how this versatile and easy-to-use line of devices includes a high-definition camera monitor and color-coded control panel with separate colors for each level of magnification and video enhancement mode for changing the contrast. It also has an XY table for positioning a newspaper, book or form for signing directly in front, with the ability to magnify from just under 2x to 60+ in magnification level, depending upon the model. He adds how it is ideal for what he calls long-term reading, so the device can read to you when feeling tired. He wraps up the segment by providing contact information, reminding listeners that Vispero representatives are there to answer any questions and guide you through various products based on your individual needs. They can also connect you with a local resource to assist you in your home; or schedule an appointment for you to visit their showroom and test the devices out. Other episode highlights include short soundbite segments where Dawn and Shawn enjoy sharing fun celebrity trivia; and provide helpful tips on living more independently with macular degeneration by enhancing contrast between an item in view and its surroundings on the more serious side. The co-hosts close out the episode with information on additional resources. What We Discuss in this Episode This fifth episode covers the following featured topics: ◦ “Dwight [Stambolian] is a world-class vision researcher at the University of Pennsylvania whose life's work, is going to have an impact on all of our listeners in terms of their macular degeneration and what's on deck for the future and the research.” (1:45) ◦ “Does thinking of yourself as being disabled change things versus thinking of yourself as not disabled?” (5:27) ◦ “My initial MacD research was clinical and focused on identifying MacD families in the Amish community of Lancaster County, Pennsylvania. In that community, we actually examined about 3,000 individuals and found quite a few families that were transmitting MacD through the generations.” (11:34) ◦ “Over the last five years, my MacD research has changed from actually being clinical to more basic science research.” (12:40) ◦ “The collection of multiple MacD stages should enable us to generate a gradient of changes in MacD that manifests early and progresses through intermediate and advanced stages.” (16:37) ◦ “Understanding these changes that underlie this gradient from early to intermediate will lead to new drugs directed at these targets, with the goal of halting the progression from early to intermediate stages. (16:55) ◦ “Before a pharmaceutical company can enter a drug into clinical trials, there needs to be some basic research accomplished, which addresses the biological activity of the drug against the targeted disease. Much of this research is performed in academic centers like mine and is usually supplemented by research labs and big pharma.” (18:36) ◦ “The clinical trials themselves consists of three phases and are designed to determine the effectiveness of new drugs.” (20:14) ◦ “What right now in those labs are kind of the bright light, a possible cure or some new medication in the future that might really benefit those suffering from acting?” (22:25) ◦ “So the exciting news, we now have research that indicates we may be able to reduce the number of injections up to 75% perhaps.” (25:33) ◦ “People all over the world are putting hope in people like you, Dr. Stambolian, scientists and doctors. So what hope is on the horizon for people who have MacD and what do you find the most promising these days?” (26:15) ◦ “How has the pandemic impacted your research and how has it impacted research in general? (28:46) ◦ “Tips to live more independently with macular degeneration. What you have to do is enhance the contrast between what you want to see and your surroundings.” (43:39) ◦ “Today we're going to be talking about the Topaz. It falls into the category of desktop magnifier. And it's almost like a PC in… your den, on a desk or on a table. And it's like a workhorse. It comes in all different sizes, and it's really easy to use.” (46:21) ◦ “The Topaz OCR is a great choice to have and goes above and beyond with the OCR capability in addition to magnification.” (53:34) Quotables “You are or you aren't what you think about all the time.” – Dawn Prall “We hear about this all the time about the holistic thinking and how people who think positively heal much more often than people who don't. So the idea of thinking of yourself as disabled can change the way you the way you view everything, your perception of everything. So just, it's a fascinating thought.” – Shawn Doyle “I've always said that in order to be motivated and positive, you have to change the language. So my suggestion… is instead of using the word ‘disabled,’ say ‘I just have a condition, not a disability.’ So that's a mindset change.” – Shawn Doyle “Say, ‘Well, I don't have a disability, I just have a condition. I have MacD. That's a condition, but it doesn't make me disabled. It just means that there's certain things I have to do differently.’” – Shawn Doyle “So what is different about our current approach to MacD? Well, first, we are focusing our research on human eye tissue to better understand what makes a normal macula different from other locations in the retina. If we can understand the uniqueness of the macula, then it might be possible to explain why the macula is susceptible to MacD. Second, we are collecting eye tissues from deceased donors who have no disease and others that have MacD. Using tissues from both sources, we seek to find the differences between the eyes that are normal and those that have MacD.” – Dr. Dwight Stambolian “Understanding these changes that underlie this gradient from early to intermediate will lead to new drugs directed at these targets, with the goal of halting the progression from early to intermediate stages. And if we are lucky, this analysis might provide clues of how MacD develops in the setting of a normal high, so we can find a cure to stop it from ever starting.” – Dr. Dwight Stambolian “And what great news that is for our listeners—people that are suffering from MacD, people whose families have people that are suffering from MacD—to know that your research has the possibility for finding a cure, or, as you said, at least stopping or slowing down the progression of this awful disease.” – Shawn Doyle “Well, first, let me assure your audience that there is research occurring all over the world to determine how MacD begins, as well as new therapies to slow its progression. In fact, amazing research advances have been made since the first therapy for the wet form of MacD was developed in the 1980s.” – Dr. Dwight Stambolian “There are major ongoing efforts to collect human eye tissue to assess the changes occurring in MacD. Such efforts utilizing human eye tissue will be the most direct way to identify the cause of MacD and eventually lead to new drugs directed at either preventing MacD or halting progression from the early to late stage of MacD, where you get irreversible loss of vision.” – Dr. Dwight Stambolian “SupportSight is at the forefront of funding projects that have high impact. Its leader Dawn Prall spends a lot of efforts screening vision scientists for their ideas and past productivity to determine who would be the best candidate to receive research funding from SupportSight. Her energy is limitless. And she strives for excellence for herself and those researchers who receive SupportSight funds.” – Dr. Dwight Stambolian Recommended Resources - https://www.med.upenn.edu/apps/faculty/index.php/p5715 - https://www.pennmedicine.org/departments-and-centers/ophthalmology - https://www.enhancedvision.com/low-vision-products/merlin-family-of-products.html - http://www.supportsight.org/research/ - http://www.mymacdlife.org/ - http://www.supportsight.org/ - https://vispero.com/ - https://www.freedomscientific.com/ - https://www.freedomscientific.com/products/lowvision/topazproductfamily/ - https://www.enhancedvision.com/ - https://www.enhancedvision.com/low-vision-products/merlin-family-of-products.html - https://us.optelec.com/
67 minutes | Mar 4, 2021
The Right Diet and Foods to Eat with MacD
On This Episode Hosts Dawn Prall and Shawn Doyle begin the episode with a conversation about the right diet and foods to eat with MacD. They not only discuss how diet and healthy eating are critical to living with macular degeneration but also share a number of resources and tips on foods that are eye healthy. Dawn explains why heart healthy living is eye healthy, including lifestyle choices, “eating the rainbow,” and taking in the right types of omegas and fish oil as examples. She elaborates on the importance of choosing a healthy lifestyle and diet—especially for the 80-85% of people with dry macular degeneration—since it is the only available treatment. In the next segment, Shawn interviews none other than his co-host Dawn Prall as the episode’s featured special guest. Dawn relates the story of how an unexpected phone call over a decade ago sparked a lifelong passion of supporting, educating and inspiring people with MacD and their families. She explains how she received the call from food magnate, philanthropist and Macula Vision Research Foundation founder, the late Herb Lottman, who asked her to serve as executive director of his foundation. After taking the job, she shares how it was a top priority for her to learn facts and the science behind macular degeneration from scientists, researchers and other MacD experts. She adds how the most profound and life-changing moment occurred once she started to meet people all over the country who lived with macular degeneration. She goes on to tell how she founded The SupportSight Foundation as a non-profit organization singularly focus on macular degeneration, with a solid track record of effectively serving the MacD community—one that includes those who either have macular degeneration; have a loved one with it; or are in some way connected to the disease. Dawn concludes her interview by offering listeners hope with news about gene therapy-based research for future MacD treatments funded by the foundation. Actress, singer, voiceover artist and SiriusXM radio show host Christine Pedi stops by in the next segment from New York City to share inspired adventures, as she navigates life through diminished vision and transitions into the world of visual challenges. In this episode, Christine offers relatable anecdotes about how she discovered her visual impairment during an on-stage performance of Noises Off, as well as a subsequent detached retina surgery at age 28. She closes the segment with details of her medical visits surrounding Strabismus surgery for her eye turn years later, interjecting humor as she relates her story. The podcast moves on to 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 the podcast, they highlight Vispero products that can enhance people's lives. In this episode, Bill and Mike introduce the RUBY® Family handheld video magnifier line of products. The Vispero duo provide detailed overviews for each of the four individual portable rechargeable magnifiers. They also highlight key features, such as a range of magnification and contrast settings, designed to make simple tasks not so cumbersome. The show continues with a new guest interview segment featuring The SupportSight Foundation (TSSF) board members sharing their unique and inspiring stories about vision loss and impairment. In this episode, Dawn interviews TSSF board member John McInerney, who imparts his powerful firsthand story. He recounts how he was diagnosed at age 6 at the Massachusetts Eye and Ear Institute in the 1950s, elaborating how his condition called retinitis pigmentosa is very similar to macular degeneration, in terms of the way it progresses and is also an inherited disease. He shares his experiences from playing sports in high school; to receiving funding from the Massachusetts Commission for the Blind to attend Notre Dame; to his first time out of New England on a plane to South Bend, Indiana at 17, knowing no one and being legally blind. John shares uplifting milestones from undergraduate, to completing his masters, to his first job as an engineer designing material-handling systems working for the government in Ohio. Dawn then follows his career journey as a manager for Westinghouse Electric Company where John shares his on-the-job challenges with accessibility and how he navigated the workplace—until he couldn’t. In a poignant moment, he also shares how he contacted the state’s Office of Vocational Rehabilitation to enter an accelerated rehab program at the Greater Pittsburgh Guild for the Blind while he concurrently worked. After finishing up his Westinghouse career as vice president, John went on to working in the blindness field, including a stint as interim CEO of the Pennsylvania Association for the Blind and serving as board member of BVRS in Pittsburgh and The SupportSight Foundation. John and Dawn wrap up the interview exchanging encouraging words and advice for anyone suffering from vision impairment or loss. Other episode highlights include short soundbite segments where Dawn and Shawn have fun sharing trivia, as well as offer additional tips for low and impaired vision on the more serious side. The co-hosts close out the episode with information on additional resources. What We Discuss in this Episode This third episode covers the following featured topics: ◦ “I think people will get a lot out of your interview, talking about your story, how you founded The SupportSight Foundation.” (2:04) ◦ “Diet and healthy eating is really critical to living with macular degeneration—there are all kinds of foods that are eye healthy.” (3:08) ◦ “What are some things people should have more in their nutritional plan for eye health?” (3:27) ◦ “A question that I would immediately have is where do people go to find out about right kind of diet to follow for healthy vision?” (5:30) ◦ “Today I have the privilege, the pleasure, to interview my co-host, Dawn Prall, who is also the executive director and the founder of The SupportSight Foundation. ” (6:48) ◦ “And so we created a program, the SupportSight Patient Education Advocacy Program, which was already there when I took the job, but we changed the model.” (14:40) ◦ “We often talk on this program, MyMacDLife about hope—what kind of research are you currently involved with that might give people reason to have hope for either a treatment or a cure for MacD?” (17:22) ◦ “The latest project that The SupportSight Foundation funded—and we just announced and are really psyched about—is a genetic study… We're also looking at funding some low-vision research.” (17:55) ◦ “I do have some stories from my previous experiences with visual challenges, specifically some of the surgeries I've had.” (23:50) ◦ “Today, the assistive technology folks at Vispero are going to be talking about the RUBY® Family. ” (32:34) ◦ “The RUBY® is a group of four different handheld video magnifiers.... that when it debuted, it was by far and away an industry changer.” (34:52) ◦ “Here's another practical tip for living with macular degeneration: decrease glare.” (39:53) ◦ “We'd like you to learn more about the people who really are dedicated and committed to the mission of the foundation.” (40:47) ◦ “It would be a good thing for folks who are listening to get to know your story. So powerful a story, and it's best told to others by you. So where I think would be great for you to start is explain to the listeners, you’re visually impaired, and how your life has dramatically changed when you and your family got the news that you were diagnosed with retinitis pigmentosa.” (42:13) Quotables “I started to meet people all over the country who live with macular degeneration. And that was profound.” – Dawn Prall “We have a constituency. By and large, the majority of them either have macular degeneration; have a loved one who had macular degeneration; or are in some way connected to the disease, because it is 1-in-4 people over the age of 65 have some degree of or some stage of macular degeneration. So it's that huge. And it's that real.” – Dawn Prall “There's a lot of buzz about gene replacement therapy, and also stem cell therapy.” – Dawn Prall “I just hope that… we can move that needle. Because if we stay focused on it, like we are and we will, I know we can make a difference.” – Dawn Prall “We're going to talk about all sorts of silly things, important things, emotional things, angry things, you name it. I'm feeling them all, as I transition into a life filled with many more visual challenges.” – Christine Pedi “The best thing I did was go to the rehab program and take advantage of the services that were available. And that helped me maintain my independence. It was, to be honest, really a mental thing to get over as much as a physical thing.” – John McInerney “You just put your head down and just did it. You didn't let your vision issues, no matter what age, get in your way. And I think that's really an important message that the audience—and people listening—needs to understand.” – Dawn Prall “It's important to advocate for yourself, so that you can maintain independence. And it's also important psychologically, to cross that boundary that says, ‘Okay, I have a visual impairment, I need to deal with it.’ That was one of the most difficult mental boundaries that I had to cross. Once I crossed that line, then it was okay. ‘Watch out, don't get in my way, there’s all kinds of technology out there, there's all kinds of opportunities, and the sky's the limit.’” – John McInerney “That's the one piece of advice I want to say to everyone that is, you know, make the decision and go for it because if you don't, you're going to end up sitting in a corner, probably for the rest of your life.” – John McInerney “And I think with the technology that's out there today, and organizations like The SupportSight Foundation, it's in everyone's best interest to maximize what they can do with their vision impairment in order to maintain independence, and to maintain a quality of life that that they use. There's just so many opportunities and so much technology out there today.” – John McInerney Recommended Resources - http://www.supportsight.org/ - https://www.nei.nih.gov/ - https://www.mvrf.org/ - http://www.mymacdlife.org/ - https://vispero.com/ - https://www.freedomscientific.com/ - https://www.freedomscientific.com/products/lowvision/ruby/ - https://www.enhancedvision.com/ - https://us.optelec.com/ - https://www.masseyeandear.org/ - https://www.mass.gov/orgs/massachusetts-commission-for-the-blind - https://www.evas.com/pdflinks/PVC.pdf.. - https://www.evas.com/cgi-bin/htmlos.exe/Main.htm - https://www.bvrspittsburgh.org/ - https://www.pablind.org/
58 minutes | Feb 18, 2021
The Energy Required to Live With MacD
On 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 fourth 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) Quotables “I think I would just tie it up in a nice tidy bow and say this: Don't be afraid to ask for help.” – Dawn Prall “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.” – Richard Tapping “People have no idea that there are tools that absolutely do help and reinstate, reinstall the independence that someone may have lost over the vision loss.” – Richard Tapping “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.” – Dawn Prall “I should make the point that this is all Vispero does, and all we've ever done. 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. – Richard Tapping “We get the highs, we get the lows. 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.” – Christine Pedi “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.’” – Christine Pedi “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.” – Christine Pedi “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. It may be your new normal, but you can live an amazing, beautiful life just by addressing hope.” – Shawn Doyle Recommended Resources - https://www.healthyvisionassociation.com/ - https://www.novartis.com/ - https://vispero.com/ - https://www.centricbank.com/ - https://hinklestein.com/ - https://www.freedomscientific.com/ - https://us.optelec.com/ - https://www.enhancedvision.com/ - https://www.freedomscientific.com/products/lowvision/rubyproductfamily/ - https://www.christinepedi.com/ - https://us.optelec.com/products/cr-ba-g2-us-13m-optelec-clearreader.html - http://www.supportsight.org/ - http://www.mymacdlife.org/
60 minutes | Feb 4, 2021
Maintaining a Positive Attitude!
On 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)
48 minutes | Jan 21, 2021
Living With MacD
Hosts Dawn Prall and Shawn Doyle begin the episode discussing how people with Mac D and their family members maintain hope. They share examples of how individuals see a bright horizon and future hope in new treatments—and eventually a cure. They also find hope in data, information and research from driven scientists and medical researchers committed to discovering new treatments, medication, cures and eye care. Dawn and Shawn introduce ways to maintain independence with Mac D. One example is innovative assistive technology by Vispero to make individuals’ lives with Mac D easier and better, which they revisit toward the show’s closing. Later in the episode, they cover simple tools you can integrate into daily Mac D life to enhance the ability to see. They clarify and offer suggestions on three types of magnification: relative distance, relative size and angular. Shawn interviews leading retina specialist Dr. Timothy Murray as the episode’s special guest. Dr. Murray offers details and information about macular degeneration as a disease. He also shares what new treatments to look ahead to, as well as provides tips and strategies for patients and their caregivers, including key questions you should be asking your doctor. The podcast closes out with a featured segment from Bill Kilroy, Vispero Senior Sales Director for the Northeast, and Mike Woods, Strategic Accounts Manager for Education for Vispero, 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 recently released Optelec Compact 10 assistive technology—a portable electronic video magnifier with a 10-inch display and touchscreen, among other key features they share. Hosts Dawn and Shawn wrap up the episode with fun trivia and information on additional resources. What We Discuss in this Episode This first episode covers the following featured topics: “We've got Dr. Timothy Murray, who's a leading retina specialist…he's going to give a lot of great information about the disease of MACD plus is also going to give people some tips about things like what are three things you should ask your doctor. (1:29) “We also have some ideas about maintaining independence with MACD.” (2:05) “We have some great stuff from Vispero. They're talking about some of the incredible assistive technology that they have to make your life easier and better.” (2:10) “Wet macular degeneration, which is what 15 to 20% of people have, there are treatments for that called anti-VEGF. And more and more treatments are on the market now to help people.” (6:52) “The American Society of Retina Specialists is an organization that includes virtually every retina specialist in the United States that also has international presence.” (9:50) “The cause of macular degeneration is aging within the eye tissues that are predisposed to degeneration. What makes us at risk is that there's these little dots underneath the retina called drusen.” (17:35) “You should never leave the doctor's office without understanding a few basic things. What's my diagnosis? What is my treatment plan? What do I need to do to make myself healthier? And when do I need to come back and see you again, and I tell my patients never leave without making your follow-up appointment?” (22:17) “The tips that we're going to talk about in our shows, we hope are simple things that you can integrate into your life that are going to make it really big difference. Number one, make what you want to see larger. So that really means magnification. Magnification is your friend when you have macular degeneration.” (37:40) “Today on our assistive technology folks from Vispero are going to be talking about a Compact 10.” (40:16)
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