MyMacDLife - Macular Degeneration Podcast

In the season 2 finale of MyMacDLife, David Wolf joins as a guest host. David Wolf is the CEO and founder of Audivita Studios, the producers of this podcast series. David is joined by Matt Prigge, lead casting director at Audivita Studios, and Meghan Elizabeth Tauck, co-author with William Douglas Horton of Living in a Time of Dying: Cries of Grief, Rage, Love, and Hope.In this segment, you'll get an inside look into the world of audiobooks as our guests explore the profound impact of audio storytelling, for you and others living with macular degeneration, including Meghan's co-author, William, who was recently diagnosed with MacD.To begin this episode, Meghan speaks about her writing process, how she started her writing career and what she intended to accomplish. She recalls how her work stemmed from a series of conversations with William in 2020 that evolved into a book.  Presenting their ideas as a dialectic, Meghan organized their separately written chapters in relation to one another. The audiobook was intended to mirror this structure. To maintain the two authors' distinct voice quality, Audivita Studios produced the Living in a Time of Dying audiobook as a hybrid model, combining author narration with the performance of a professional voice actor, cast by Matt Prigge.  Next, Matt walks us through the key considerations factored into casting any audiobook project: tone of voice, personality, and certain “intangible qualities.” Namely, the right person for the role comes down to the project and what the author finds important.Next, David, Meghan, and Matt discuss the impact of audiobooks on accessibility, especially for the low-vision community. Meghan presents a philosophical perspective, saying different ways of perceiving contribute to a better world. Accessibility means more people get to participate in this collective world-building experience. Branching from this, Matt contemplates the power of the spoken word, from primeval storytelling to the new, digital age.Next, David and Matt return to the topic of audiobook casting for non-fiction versus fiction books. It all comes down to an actor's particular skill set. Whether casting a single voice or multiple actors, both approaches come with creative challenges and exciting opportunities. Meghan shares her experience with the audition cycle.As the conversation unfolds, Meghan shares a letter from William addressed to our audience. The 70-year-old philosopher was recently diagnosed with wet macular degeneration. In addition, his mother had MacD, and unfortunately, without treatment she became functionally blind. His open letter is a reflection on writing and the power of the spoken word to connect people. This leads to a conversation about its deep history and the intimacy inherent to audio.Meghan closes the podcast encouraging us to reexamine and challenge disability labels. For those who are struggling with MacD and grappling with vision loss, she underscores the gifts brought through the myriad ways of perceiving and participating together in this world.Recommended Resources:- https://a.co/d/bMSX1BO- http://www.supportsight.org/- http://www.mymacdlife.org/- https://www.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://www.hinklestein.com/- https://www.maculardegeneration.net/- https://www.mymacularjournal.com/- https://www.facebook.com/groups/mymacularjournal/- https://www.health-union.com/Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

Kira Baldonado is back! In this part 2 episode, Jeff Ostroff and Kira pick up where they left off. Kira's discussion of federal legislation in part 1 leads to a conversation about what states do to address the concerns of those with low vision and their families and caregivers. Kira shares research on the impact of COVID-19 on vision health, the future of new treatments, and how your story can make an impact on others. Kira explains, at the state level, change is driven by a readiness to act. There needs to be a combined effort between the state health department's and community organizations with data to drive the allocation of funding. She advises you to “bring together the visionaries in your state” and seek out or form a coalition of people to tell the story of what's happening in your state. She adds, “It works best if it's a groundswell up.” Kira names Ohio and New York as examples where this “groundswell up” approach has worked. In conjunction with Prevent Blindness, Ohio's Aging Eye Public Private Partnership created a coalition. As a result, Ohio has changed policy, practices, and resources for the visually impaired community. In New York, advocates are integrating vision health into existing efforts by the state department to improve the wellness of New York's aging populations.Jeff follows up with a question about what you should do if you want to replicate successful policy and advocacy efforts in your own state. Kira explains there are resources, toolkits, and templates available at the Center for Vision and Population Health at Prevent Blindness. Using state-level data and the power of your stories, The Center for Vision and Population Health provides recommended actions policymakers can integrate. Next, Jeff asks Kira about the impact of COVID-19. Kira discusses a correlation between COVID-19 and increased cases of myopia in young children. Additionally, many adults, like patients with MacD, struggled to maintain their crucial eye care appointments and injections. However, Kira does note some positive influences as legislators have become more willing to engage with the story about vision and health. Luckily, Prevent Blindness seamlessly transitioned to remote work and were able to continue their mission when offices were closed. Jeff closes with a question about hope for things to come. Kira says she sees a bright future ahead in the realm of treatments. There are new ways to treat eye diseases that have been otherwise untreatable. She cites new life-changing genetic therapies including forthcoming clinical trials for retinal diseases like MacD.Lastly, Kira expresses optimism about the push for vision in the conversation about health care. She concludes with a message for our listeners: “The biggest change you can be a part of right now is the wave of the patient influence and care practice.” She emphasizes, there are many ways you can be a part of the conversation. Other people will benefit from your voice, your passion, and your story.  Recommended Resources- https://preventblindness.org/- http://www.supportsight.org/- http://www.mymacdlife.org/- https://www.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://www.hinklestein.com/- https://www.maculardegeneration.net/- https://www.mymacularjournal.com/- https://www.facebook.com/groups/mymacularjournal/- https://www.health-union.com/Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

Jeff Ostroff speaks with Kira Baldonado, Vice President of Public Policy and Health at Prevent Blindness. Kira brings two decades of public health advocacy and leadership experience to the conversation. In this episode, Kira shares her current public policy and advocacy efforts and how it affects people with MacD, your families, and other caregivers. She explores how you can use your voice and your vote to support changes in healthcare. Prevent Blindness is an organization that takes a public health approach to vision and eye health. They are focused on providing early detection of vision problems, getting people access to care, and helping those who may have experienced vision loss experience a high quality of life. Their key focus is Education, Advocacy, and Empowerment. Kira shares how her inspiration evolved over the two decades she's worked at Prevent Blindness. First, as a mother advocating for early childcare vision screening for her son and his preschool peers; then later in life, as family members experienced vision loss due to diabetes-related eye disease. Jeff opens up about his own experiences with diabetes and the importance of annual eye exams.  Next, Kira discusses the collaborative research initiatives between The SupportSight Foundation and Prevent Blindness. The two organizations worked together on a clinical research survey, called Mosaic, which aimed to understand how MacD impacts individuals and their caregiver, many of whom are spouses and family members. Next, Jeff pivots to federal policy changes under Medicare, something many of you have a vested interest in. Kira critiques the 2022 Build Back Better Act for not including vision and hearing care coverage under Medicare. She highlights, “We all need to use the power of our voice through voting to make sure we have individuals in the legislature that understand the importance of more comprehensive access to healthcare.” She mentions that access for Assistive Technology devices is particularly restrictive due to laws currently in place. They are fighting to change that. On the topic of health care, Prevent Blindness centers public health research and community-level interventions, with funding through organizations like the Center for Disease Control and Prevention and the National Eye Institute. Beyond the clinical research, Prevent Blindness looks to get early detection practices, education initiatives, and care for communities in need. She places a strong emphasis on using the data to understand what communities are benefiting from vision care access, and where more support is needed.  Kira then expands on another community initiative called Aspect--a patient engagement program that offers training that empowers you to share your story of vision loss, or caretaking, with key stakeholders to improve clinical trials and care. Kira says, “It's the story of the individual that the speaks loudest in the room to drive change.” Kira and Jeff end part 1 of the episode by exploring the need for a balanced approach to public health research and greater funding. One that not only focuses on the new developments in scientific discovery, but also examines which populations are benefiting and which populations are underserved. Stay tuned for next week's part 2!Recommended Resourceshttps://preventblindness.org/http://www.supportsight.org/http://www.mymacdlife.org/https://www.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://www.hinklestein.com/https://www.maculardegeneration.net/https://www.mymacularjournal.com/https://www.facebook.com/groups/mymacularjournal/https://www.health-union.com/Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

Host: Hilary StundaIn this episode, Hilary Stunda speaks with Dawn Prall, the creator of MyMacDLife Podcast and the founder of The SupportSight Foundation. The majority of Dawn's work has been in the health care and social services industries. In the last decade, she has become a champion of low vision patient education, raising awareness to fund MacD research. In this episode, she shares her story.Dawn Prall began working in the field of macular degeneration twelve years ago when she received an unexpected job offer from the founder of the Macular Vision Research Foundation, now known as The SupportSight Foundation. Initially, she knew little about macular degeneration; however, in the first year, she immersed fully in the role. Dawn says she had the benefit and privilege to learn from, and “geek out with” scientists and researchers at the foundation.Hilary asks Dawn about the inspiration for the structure of The SupportSight Foundation.Dawn traces her inspiration back to her first year, “geeking out” with the scientists and learning what an impact finding new treatments would have for millions of people. The SupportSight Foundation's national footprint allowed Dawn to travel around the country and meet with patients, and the families of patients who had lost their vision because of macular degeneration.As a disease specific charity, The SupportSight Foundation is solely focused on MacD. The work they do advances potential breakthroughs in medicine. Dawn explains the importance of the work she does for bettering people's everyday lives. While doctors do well to take care of a patient's eye health, TSSF and MMDL fill the gap of information that addresses things like going to work, family life, reading, and the normalcy of everyday hobbies. She acknowledges, when people lose their sight because of macular degeneration doing the things they love can be a challenge.MacD is not as widely discussed as something like diabetes, for example, despite it being a major disease impacting so many people. Dawn explains that it's about public health and the public's awareness. The public is beginning to know more now than they did before because research on MacD has progressed in the past 40 years. It was important for scientist to first understand the cellular makeup of macular degeneration before they could diagnose people.Next, Dawn explains MacD is a retina disease with two types, known as “Wet” and “Dry”. There are treatments currently available for “wet” MacD, called anti-VEGF injections. “Dry” macular degeneration is an area where more funding for research is needed because there are currently no treatment other than vitamins. She emphasizes, the foundation's aim is to help people learn about how to cope with MacD, and help people understand the research. All donations to The SupportSight Foundation goes towards the search for a cure.Following up on the topic of research and funding, Dawn shares how TSSF funds research projects by top scientists all over the world. She says, “Research is iterative, research makes medicine” and is not separated.Next, Dawn dives deeper into the science behind MacD. Because MacD is a retina disease, scientists and researchers explore how the retina functions within the macula of the eye to understand what causes the macular degeneration. Dawn goes on to explain, the disease gets its name from the process with which the cells in the macula of retina die, hence the name macular degeneration. Current research being done involves cellular regeneration.The macula is in the retina. The retina connects to the optic nerve and the optic nerve to the brain. And the retina's job is basically a camera. “So, you don't really see with your eyes you see with your brain.” Dawn acknowledges, for people listening, whether or not they understand that part, what matters to them is there is no cure; what matters to them is what to do in the meantime, which is what TSSF and MyMacDLife do.When asked if research for MacD has evolved over the years, Dawn responds saying, “Of course, the research is not static. A scientist's job is discovery. Their job is understanding how that retina works and why those cells are dying. The researchers and scientists need financial support to do that”. At The SupportSight Foundation, her staff and team of researchers, lead the way. Overall, TSSF has been successful in raising close to $30 million to fuel research and public education so everybody knows the disease.Hilary asks Dawn about her hope for a cure. Dawn expresses emphatically, she is not only hopeful, but optimistic. It's just a matter of time, or else I wouldn't be doing the work she does. She admits, she would love to work herself out of a job, because that means they have accomplished their goal. And at this moment, she adds, they are a lot closer than they've ever been. “Every time somebody discovers something, that moves that needle.”Dawn connects her passion for this cause to her values. In her upbringing, as a “sales brat” Dawn was accustomed to moving around often. Always the new girl in school, she learned the importance of building relationships and being approachable. That helps to create funding. She cites her Midwestern values as intrinsic and entrenched in who she is.“You have to believe in something and stand for something and my family values were more about making sure that there is a passion, there is something meaningful in your life. And then you just build your life around that.”Dawn expresses what an honor and a privilege it is to make a difference in people's lives. MyMacDLife Podcast has given The SupportSight Foundation a microphone, to bring people together, tell their stories, and create a community. It enables the foundation to do more in a powerful way.Hilary agrees, saying she finds the MMDL podcast gets rid of despair. She says, with the abundance of resources available, “patients can hope, at the end of the day, they're not as lost as they think they might be." Dawn says the podcast aligns with the personality and value of the foundation: intimate, relationships-centric, and warm-big.Dawn emphasizes that patient advocacy is key to her work. The power of advocacy comes from knowledge of the disease and sharing the experiences people go through losing their vision. First, sharing with their friends, family, and caregivers. Then, sharing it with the rest of the world.Dawn acknowledges, “This world is not set up for low vision.” She reflects on making brownies, the directions were printed was brown on brown. Initially, advocacy focused on awareness of MacD. Now, it's expanded to advocate for everyday accessibility on computers and assistive technology. There's a force behind advocacy when MyMacDLife gets everybody who's listening and everybody who's affected by it to join together.Dawn invites listeners to learn more at mymacdlife.org, donate to The SupportSight Foundation, share their story, and help build community.In the last segment, Dawn speaks with Mike Wood from Vispero. Mike shares information about the RUBY Family products by Freedom Scientific, a line of Assistive Technology. The RUBYs are a series of portable video magnifiers that come in multiple sizes that use a camera lens to enlarge and sharpen the image of any page of text. For example, when checking a price tag, or reading a menu. To learn more about the RUBY Family, go online to www.vispero.com or call their toll-free number, 1-800-444-4443. Mike lets listeners know you can go to freedomscientific.com to listen to an online webinar about how to use your Ruby video magnifiers.Dawn ends the episode emphasizing that MyMacDLife is a resource above all, dedicated to supporting patient education.  Recommended Resources- http://www.supportsight.org/- http://www.mymacdlife.org/- https://www.vispero.com/- https://www.freedomscientific.com/- https://www.freedomscientific.com/products/lowvision/rubyproductfamily/- https://www.enhancedvision.com/- https://us.optelec.com/- https://www.healthyvisionassociation.com/- https://www.novartis.com/- https://www.hinklestein.com/- https://www.maculardegeneration.net/- https://www.mymacularjournal.com/- https://www.facebook.com/groups/mymacularjournal/- https://www.health-union.com/Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

In this episode, Marcela Salmon speaks with Cassidy about growing up with a father, uncle and aunt with macular degeneration. Cassidy has lived around MacD for her entire life. She became aware of her father's condition during a trip to Colorado when she realized her father couldn't read things easily and she would help. Her father first worked for Vispero, then for LVI, a company based in Sweden that sells products to help legally blind people. When LVI expanded to the United States, her father became the chief marketing sales director for the United States division. Her father never viewed himself as having a handicap. In fact, his disability made him even more successful in life and opened the door to helping others find success as well. One of the inspiring things Cassidy's father did was write a book called Tripping Into The Light about his journey growing up with Stargardt's juvenile macular degeneration and how he has been successful in life. As the story goes, Cassidy's grandmother took her father and his three siblings to a hospital in Massachusetts to get tested for their eyesight. The doctor proclaimed their eyesight would get progressively worse and proceeded to write a list of all the things they could and could not do in life, including skiing and snowboarding. Leaving the office, his grandmother threw the notes in the trash and the rest is history - Cassidy's uncle became a ski instructor in Colorado and her father became an entrepreneurial success. Her grandmother made sure the disease would not hold her children back from pursuing whatever they wanted in life. Cassidy explains that her father uses a CCTV that reads to him or magnifies things for him as he only has peripheral vision. Cassidy tells Marcela that her father has learned how to train his eyes to look straight at you when he's talking rather than peering from the side of his eye. Cassidy explains that this adaptability and entrepreneurial spirit is one of the driving factors to his father's success, and an inspiration to her. Marcela As a caregiver Cassidy says learned when to step in and help and when to back off, and that she thinks patience is the key to aiding people with MacD. She stresses how important this is for independent people like her father, who get easily frustrated when they want to do things on their own, but can't. They also don't like to be approached by strangers and assisted without first knowing what is going on. Cassidy references an example of the time two people lifted up Cassidy's father to help him cross a street. This episode focuses on what it's like to be a caregiver and how you tend to notice everyday things differently, like restaurant lighting, going to the movies; even the monotone colors of carpeted stairs, which can be tricky to navigate for a person with macular degeneration. Luckily Cassidy's father is very open and even lighthearted about having MacD. He has accepted his eye disease and often speaks out, making suggestions that would improve his surroundings. He can laugh about his shortcomings and puts his energy into reading “how to” informational and nutritional books for self-actualization. Cassidy's father now runs a nonprofit called “The Thriving Blind Academy,” where he teaches the principles of success. Bill Kilroy of Vispero shares information on the Freedom Scientific Topaz line of desktop video magnifiers. These devices sit on a desk with a video magnification system that includes a camera monitor and an X Y table. The monitor sizes range from 20, 22 or 24 inches. It's versatile, with the ability to swing left or right, raise or lower depending on your height. It allows for someone with notes to be able to move those notes around and be able to magnify what they need. Because these devices have a bigger monitor, they can magnify more information on a page at a time. There's less mental processing to put the characters into words, the words into sentences, the sentences into paragraphs, and you can use these devices for longer periods of time than a handheld magnifier. It also allows the user who might want to pause on reading a chapter to start scanning pages so that they can sit back and listen to what's being read. The Topaz OCR is a great choice to have and goes above and beyond the OCR capability. To learn more about The Topaz or The Merlin or The Optelec, there are two ways to get in touch. Go online and type in www.vispero.com or call our toll free number at 1-800-444-4443 and speak to one of our customer service representatives. You can tell them what you're interested in, they can guide you through some of the products and can connect you with a local resource that can help you in your home or schedule an appointment to potentially come to their showroom and learn more about these products and test drive one for yourself. Full Disclosure: Cassidy Collins is the eldest daughter and a caregiver to her father Charlie Collins. Charlie Collins is a member of The SupportSight Foundation board of directors. In compliance with TSSF governance policies, members of his immediate family (daughter) did not receive any direct financial benefit for her guest appearance on this podcast. 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/mds https://www.thrivingblindacademy.org https://lviamerica.com https://charliecollinsonline.com/product/tripping-into-the-light Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

In this episode, Hilary Stunda speaks with Jamika Porter. Jamika shares her personal story, realizing as a child of 6 that she couldn't see as well as her peers, to adjusting to life as a school-aged young girl, to a college student and then graduate student, who received her Masters degree in communications. What she discovered along the way, after numerous doctors, was that the conditions she had ran in her family, which is interesting as RP is a rare genetic disorder, affecting only between 82,000 and 110,000 people in the United States. Her mother was one of nine children and four of her uncles also had some form of an eye condition as well as her grandfather and many of her cousins. Jamika was diagnosed when she was about 15 when she saw a retina specialist. Before, she just kept getting new eyeglasses with a new prescription every year, or every six months or so. When she was 30, she started to seek treatment on her own just outside of regular eyeglasses. Jamika says that growing up with relatives who also had eye conditions helped to prepare Jamika. Since her mother was almost totally blind, she learned how to do certain things that made life easier, like placing furniture in certain configurations. Jamika tells Hilary how difficult it was growing up with Stargardt's and RP and that she mainly kept it to herself as staying silent about the condition was easier than telling people what was wrong. An eye specialist told her when she was 15 that she would probably be blind by the time she was 40. The turning point was when, in her late 20s, she worked for a law firm that offered very good insurance. That's when she started going back to the eye doctor. After seeing a number of physicians, Jamika eventually found a doctor that treated her well and did not consider her a case study. Jamika explains that she is learning to accept the Assistive Technology around her. She says that she uses her Kindle to read ebooks, and a Ruby device for everyday use. She continues, saying that to get around she uses Lyft and Uber and relies on a few friends and a sister who will come and take her places. But mostly, she takes care of herself. What has served her the most is reaching out to friends for support when she comes up against people who don't understand what she has and what she is going through. Learning that “everybody has some story.” Jamika learned is that maternal grandfather probably had Macular Degeneration but considering he was born in 1890, no one knew. Recently Jamika had an aunt pass away who was 101. She recalls how she lived independently with her husband for years and that she managed because of the way she set up her house, the lighting and furniture and kitchen. She cooked and was able to take care of herself. Jamika hopes to live that way. In the final part of this episode founder and executive director of The Support Sight Foundation, Dawn Prall speaks with Mike Wood from Vispero for the Product Spotlight. For the past 15 years, Mike has been working with schools as well as with the senior market. Mike talks to Dawn about the Assistive Technology devices that Vispero makes for people who have low vision. Visperohas been around since 1975. The name is the combination of two Latin words, one being Visio and the other being Spiro. Visio means the vision, and Spiro means hope. Mike tells Dawn how this is appropriate as their mission is to provide hope, determination and independence through all of their different products, whether it be hardware or software that support those with low vision. Mike and Dawn talk about what some of the warning signs for those who think they might have low vision. Mike says it's often something that can't be corrected with lenses, glasses, or eye drops. If you have trouble reading even after you've had corrective lenses or have trouble recognizing faces or doing basic things around the house like cooking, sewing, fixing and repairing things. Or, if you start to notice that you might need more light, or are having a hard time matching colors of your clothing, feeling like the lights are dimmer in the room. Sometimes, if you're still driving, you start noticing the problem with traffic signs or reading the signs of stores, as you driving by. These are all signs that you may have low vision and might want to go and see a low vision specialist. Mike explains to Dawn that Vispero offers many different pieces of technology to help those with low vision get through the day. There's the handheld video magnifier, The Ruby, that is great for reading tags at the grocery store or menus at a restaurant. But, if you're at home, and you're reading the newspaper, you might want a desktop magnifier like the Optelec ClearView See. Dawn and Mike discuss some of the tools that people might benefit from when they have MacD: a handheld video magnifier, a handheld optical magnifier, a desktop video magnifier, or something that provides OCR capability which is optimal character recognition, which is basically scanning and reading so you can take text and then have it read back to you. There are also other tools out there - software-based tools for your computer. Mike tells Dawn that for those who need to magnify what's on their computer, or have the computer read things back to you, there is technology that can do that. All of these different products fall under different brands within the VISPERO company. There's Freedom Scientific, Enhanced Vision Optelec and the Paciello Group known as TPGI. Each one of these brands offer different products. Freedom Scientific, a computer software, is best known for JAWS ZoomText. They're also known for their world-renowned handheld video magnifier called The Ruby. The Ruby comes in a couple of different sizes and functionality. Some products also offer TTS - which is Text To Speech, which is like reading out loud. These products are good for helping people with low vision so they don't have to strain their eyes. This, as Dawn says, is important because it's important to remember that ‘You don't see with your eyes, you see with your brain.' Mike tells Dawn all one has to do to find the product differences, functionalities and price points is go to the Vispero site. From there, people can find what they need. For example, Mile says, Optelec is good if you need optical magnifiers, which are a glass lens-type of magnifier. It's usually where people start out using a 5x, 6x, or 7x optical magnifier. The newer ones even have LED lights in them. Mike explains that with optical magnifiers, the larger magnification you need, the smaller the lens gets. So if you have a 5x, it's a larger lens. But then if you get up to 10 and 12x, it becomes a much smaller lens. At that point, Mike tells people that's when you go over to those handheld video magnifiers until you graduate over to The Ruby. Wrapping up the episode, Dawn and Mike concur that it's all about helping people with low vision invest in devices that will help them. It's not about regaining your sight, but performing tasks better. You see better because you're using the device, and you're regaining independence. It's about developing and delivering innovative solutions that will enable individuals with low vision to reach their full potential. **** What We Discuss in this Episode …Most people think it's night blindness. I have trouble with shadows. Even if I'm outside and I walk under a platform and it's dark, it completely changes. It temporarily blinds me for a second. 5:46 …My mom was one of nine kids. My mom, two, three, and four, of my uncles all had some form of an eye condition. My grandfather also had an eye condition and many of my cousins. 7:01 …When I was probably about 30, I started to seek treatment on my own just outside of regular eyeglasses. I can feel changes in the way I saw things. 09:04 …I did just enough to get by. Because I never wanted to explain to anybody why I just let people assume that I was lazy or didn't care about school, which wasn't true at all. But it was easier than trying to explain to people what was wrong. …Some things just become a way of life, because like I said, my mother was almost totally blind. So, as far as household, I function as a person that couldn't see, because that's the way I was taught. Like furniture is placed in a certain way, you open up all the curtains. 10:53 …I'm now in my 40s. When I was about 28. I got a really good job. I worked for a law firm with excellent insurance. That's when I decided to go back to the eye doctor. 13:32 …I'll be honest, I'm still working on this technology part. Some things are difficult because I do get embarrassed when I'm in the store and I can't see a barcode and I have to take out the magnifier. I have an app on my phone… but it's embarrassing. So I faked my way through some things but I'm getting much better. 14:48 …I have two really large televisions. I have some friends that, to this day, do not realize there's anything wrong with me. Because to look at me you would never know. 15:00 …With the Stargardt's and then with the RP, it's more internal. You'll never be able to look at me and say that I can't see. …People can be cruel. So, I made the decision I would never have to depend on anyone at a very young age. Now that I think about it, I think I did suffer from some depression. And I still do sometimes. There are little things that I miss that I could do even just five years ago, but I have trouble doing now. So I just try to move on. 16:40 …I decided that for myself I wanted to finish my bachelor's degree. So I did. Shortly thereafter, I got a master's degree. Not for anyone else. But it's mine. I worked for it. I struggled for it. I had to study twice as long and twice as hard. But I graduated with a 3.9 grade average. I was like, ‘This is mine and no one can take it. 20:40 I am one of the only ones with Stargardt's because, through research, I found it skips a generation. And what my mother realized as she got older was that her maternal grandfather probably had Stargardt's but considering he was born in like, 1890, they didn't know and thought it was just bad eyes. 21:54 …Once I was old enough to understand that it was a genetic condition and not just something that I got when I was younger. The first doctor told me because I was probably staring at the sun. 22:38 …I needed to have answers for myself. And I'm like that with most things. You can't just tell me something and I believe you. I need to know. Talking to my mom and then talking to my dad, because I had a doctor who told me that my parents are probably related. That's how I got Stargardt's. That was a little traumatic. You just told me my parents were related. So that was another factor. 23:23 …Stargardt's is an adolescent version of macular degeneration. …I use a Kindle with very large font and contrast. I have since I've been working with Sage, I use the device, The Ruby, you can put it on and read it. 25:16 …I do Lyft and Uber a lot. I do have a couple of friends…but I don't really like to ask people unless I absolutely have to. I go out during the day, every week I go do my grocery shopping, I get on the bus. I don't take the subway anymore. I stopped within the past two to three years because it's really dark under there. If somebody approached me, I wouldn't be able to see them. …That's what made me stop riding. I tripped coming up the steps. …I want to be more of a mentor. A couple of years ago, I worked for a program and we worked with underserved and under-resourced students. I absolutely want to be able help them going forward. It can be economically, socially or because of a disability. I want to work with children to help them move forward. But I've also found that I like working with adults I can share with. I can answer questions. 30:37 …I have one cousin, and we discovered we see the same retina specialist. We both have given him permission to discuss this in the exam. 32:57 …Oh, I hope so. That will be great. It hasn't been very long since I've been here. Still a learning and training process. But I would love to be a resource for other people or just a sounding board. 34:28 …My mother was in her 30s when she was diagnosed with Stargardt's. She went through the same thing I did where they just kept changing their glasses. So you know, he'll make the comparison. And you know, it was like he personally called me when my genetic testing came back and they realized that I wouldn't go completely blind and I thought that was so sweet. It wasn't a nurse. It wasn't an email. I was like, this is this is really nice. 35:00 …I'm in good hands…When you get people that care and they state, I don't see the way that you see, but I want to help you, it makes a difference, as opposed to someone just saying we'll do this or do that. 39:17 …A few of the different things that I find are signs that you're starting to have low vision. Often, it's something that can't be corrected with lenses, whether it be contact lenses, glasses, something like eye drops. It might be difficulty reading a book, newspaper or magazine even after you've had corrective lenses. 40:00 … Finding that it's difficult to do basic things around the house like cooking, sewing, fixing and repairing things. 40:05 …Another key factor is if you start to notice that you might need more light, or you're having a hard time matching colors of your clothing, feeling like the lights are dimmer in the room. Then, if you're still driving, noticing traffic signs or reading the signs of stores, as you're driving by. These are all signs that you may have low vision and might want to go and see a low vision specialist. … It's not going to be a one tool fixes all types of situation when you have MACD. Many times people I'm working with that have MACD might have multiple different pieces of technology to get through the day. 41:28 …One of the best selling in the industry, The Ruby, is going to be really beneficial for reading the menu. But, if you're at home, and you're reading the newspaper, you might want a desktop magnifier like the Optelec ClearView See. 42:01 …Assistive Technology devices that are out there that VISPERO makes. This is the technology that, if you have low vision, you can do things like reading; tasks that you may not be able to do as well now that you have low vision. …Some of the tools that people might benefit from when they have MACD: a handheld video magnifier, a handheld optical magnifier, a desktop video magnifier, or something that provides OCR capability which is optimal character recognition, which is basically scanning and reading so you can take text and then have it read back to you. …When you have low vision, you need Assistive Technology. Under the VISPERO umbrella there are a couple of different brands. There's Freedom Scientific, Enhanced Vision Optelec and the Paciello Group known as TPGI. … Three of the key things that you should focus when you have low vision are going to be magnification. Often you need magnification support. Things need to be enlarged. Lighting, you often need more lighting, so it might be as simple as having a desk lamp… 44:48 …Or changing the light bulbs to be a different brightness and contrast. 45:00 …Text to speech? So TTS is basically the exact same thing. The product offers you text to speech using the character recognition technology. …The button placement might be in a different area, the handles shaped differently, you might have a touchscreen device instead of having tactile buttons. …The text to speech helps because it lets you sit back and have something else read the text to you. So you can close your eyes, relax, and listen to the text out loud. …Because with optical magnifiers, the stronger you get, the higher you need, the larger magnification that you need, the stronger the magnifier, the smaller the lens gets. So if you have a 5x, it's a larger lens. But then if you get up to 10 and 12x, it becomes a much smaller lens 50:00 …They're investing in devices that will help to perform tasks better. And then you do see better because you're using the device… ……and you're regaining independence. There are so many people that need something as simple as wanting to read the mail…on their own. 51:18 …Our key is to develop and deliver innovative solutions that will enable individuals that are low vision to reach their full potential. …We have people using these to play bingo, do crossword puzzles. I've met people that use them to knit. 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/mds * Note: All listed transcript timings and wording are approximations.Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

In this episode, Marcela Salmon speaks with Andy Burstein, founder of Accessible Pharmacy Services for the Blind, a home delivery pharmacy and health care company. Marcela expresses how excited she is to learn more about how Andy got started with the company, which is the largest, blind-owned healthcare company in the world, and the only provider of its kind. Andy explains how his business model merges accessibility and health care, and works with individuals on a personal basis providing personalized medication. By working with the individual, identifying specific challenges the company can then assemble a collection of solutions that empower individuals to lead more independent, and ultimately, healthier lives. Andy shares that he idea of the company started five years ago. At the time, Andy was running a healthcare marketing firm and he wanted to educate his clients on how to be more accessible and how to experience patient growth. Andy explains that he met another cofounder of Accessible Pharmacy, Alex, because their sons both played Little League baseball together. Alex, who is blind due to Retinites Pigmentosa, had earned a PhD; his dissertation focused on accessibility in the American retail space. Marcela asks how Andy became interested in accessibility to which Andy replies that he has been very aware of the “DEI space.” And that, as a consumer, parent, and member of society, he always tries to be inclusive, especially in the healthcare field. It was important for Andy to be able to answer questions to his clients and staff about ways to be more inclusive. Alex learned about the Americans with Disabilities Act, and about online accessibility and the inability of individuals to gain access to websites and information. He learned how blindness intersects with online accessibility. Andy explains that for individuals with low vision, screen readers are used to read the content of websites out loud, but not all websites are compatible with the screen readers. Andy continues, saying that if someone can't access a website, no matter the tools available to them, what would happen if someone couldn't read their medication? He then discusses how critical it is for people to be able to read the expiration dates and labeling on prescriptions. They also might not be able to understand the drug interactions or the time of the day, or how many refills are left and so on. While Andy discusses the layers upon layers of challenges, his company is learning every day how they can empower the individual to understand and manage their medication and do it in a way that reduces stress, time, and helps them live healthier lives. Andy says that then, he and Alex asked themselves the question, what would it be like if they created a pharmacy experience that was tailored towards individuals who are blind? After getting feedback on their business plan from many blind organizations, such as The National Federation for the Blind, the American Council for the Blind, the AFP, the ACB, The Foundation for Fighting Blindness, they realized there was indeed a real need for this in the marketplace. After a few months researching and learning the pharmacy industry they started to look for a partner who could help them realize the opportunity in the healthcare space, which led to their third business partner, Dr. Jason Becker. Jason had an existing business model, where he spent the first 25 years of his career focusing on patients with intellectual and cognitive disabilities, who more often than not lived in group homes. He helped his two partners, Andy and Alex, realize they need to focus on the individual. They realized the key was to have a conversation with a patient first. They need to learn as much as possible about them because they have a collection of high tech, low tech and different audio label solutions that can be provided. Once they get the information, the company will reach out to the prescribers to get feedback and then they contact the insurance company to confirm eligibility. Andy stresses how they also offer a concierge capacity, making the phone calls to the doctors or existing pharmacists on behalf of the patient. They will also be the main contact for the insurance company to confirm eligibility. For patients who are deaf blind, they have those conversations via text, and email. Their company mission is to eliminate barriers to communication and accessibility. So, they provide free home delivery, all the support and education for free as they make their money by being reimbursed by insurance companies to the patient. Marcela thanks Andy who then informs the listeners where to get more information. What We Discuss in this Episode 01:58 …Accessible Pharmacy Services for the blind. We're a home delivery pharmacy and health care company. And we focus on supporting patients who are blind, deaf blind, and have low vision. We're the only provider of its kind. We're the largest blind owned healthcare company in the country. 02:49 …Our whole model is about merging accessibility and health care and working with individuals on a personal basis. Personalized medication, identifying the individual, identifying what challenges they may already have with their existing medication with their diabetes, how they're currently managing it, and assembling a collection of solutions that empower them to live more independently, manage their own medication, manage their own diabetes, and ultimately live healthier lifestyles. 03:37 … Our goal was to reach back out to our clients and educate them on how they can be more accessible, to be able to expand their offering and their messages to their existing patients, and also to experience patient growth. I decided to reach out to friends and family and people I knew who either had familiarity with the disability world or had a disability themselves, who could give me insight into their experience. 07:45 …As a business person who was working in the healthcare field, it was important for me to be able to answer questions to my clients, and to my staff, about how we can be more inclusive. …So learning about the Americans with Disabilities Act, learning about online accessibility and the inability of individuals to gain access to websites and information, and learning about blindness in particular, and how it intersects with online accessibility. Individuals who are blind, the way that they use the internet is that they use an Assistive Technology called a screen reader…But for the most part, the screen reader is essentially a software that accesses websites and essentially reads the website out loud to the consumer. …One of the challenges that exists is that not all websites are compatible with screen readers. Through a combination of awareness through lawsuits, through the knowledge and growth of the industry, people are learning more and more about online accessibility. Individuals with low vision may use magnification, may use oversized monitors, may sit closer to the screen, and there are a lot of solutions to gain access to online accessibility. …Our goal as I mentioned, as a consumer, is to learn more about accessibility, but also to be able to create solutions for our clients in the healthcare space. 10:27 …If a website's not accessible, it doesn't make a difference what type of assistive or adaptive technology an individual has, or their desire to gain access to that information. They just can't access it. Now imagine taking that concept of a website and imagine applying that to medication. Someone has a pill bottle, and they don't know what the pill bottle is. They can't read the instructions. They don't know what the expiration date is. They don't know what the warnings are… The good news is we're learning more every day about how we can empower that individual to understand and manage their medication and do it in a way that reduces stress, reduces time, and helps them live healthier lives. 12:05 …We have a dynamic in our company. It's a living ecosystem. And every time we solve a challenge for a patient, because of their unique set of circumstances, we then learn that we can now say okay, here's a collection of solutions that we can apply to a similar individual with similar circumstances. …What would it be like if we created from the ground up a pharmacy experience that was tailored towards individuals who are blind? … No one was really providing an A to Z solution focused on identifying all the different challenges that may exist in medication matters. It validated for us that there's a need for this in the marketplace. 18:22 …We need to understand the individual. What is this person's cognitive issue? What's their intellectual issue? Is it deteriorating? Is there a caregiver in their home? Or, are they living in a facility? Are they a caregiver for someone else? Are they also a caregiver for a spouse? What's their level of sight?...How are they currently managing their medications?...A combination of those things can create unnecessary and unintended side effects that range from something problematic where a person is experiencing a side effect, or sometimes a combination of those things can impact the body's ability to absorb those medications and process those medications. Ultimately, they're not getting the benefit from those medications. …We also work in a concierge capacity. So we're the ones who will make the phone calls to the doctors and will make a phone call to the existing pharmacist to get feedback on behalf of the patient. We will call the insurance company to confirm eligibility and confirm that the copays are staying the same. That conversation more often than not happens on the telephone. For patients of ours who are deaf blind, we also have those conversations via text, and email. 23:56 …One of the questions we ask the individual when we have that initial conversation is what's the best way to communicate. It's all about identifying how they want to communicate, as opposed to saying you have to go to our website, you have to go to our store, you have to call us. Our whole thing is let's eliminate any barriers to communication and accessibility. We don't charge anything for our services. There's no fee. We provide free home delivery, all the support and education we do is free. We provide a whole collection of accessible packaging and accessible labeling, We make our money by being reimbursed by insurance companies to the patient. 25:52 …We want to package and label everything so that everyone in the household can understand what's behind the medicine cabinet. … We have individuals on staff who have macular degeneration, who have retinitis pigmentosa, who have diabetic retinopathy. It gives us credibility to be able to speak to a patient. It also gives us knowledge. …There's an enormous amount of people with macular degeneration who would benefit from our services. And a lot of groups, specifically healthcare groups and organizations know that if they have a patient who was diagnosed with macular degeneration, who is struggling, they refer them to us. 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/mds * Note: All listed transcript timings and wording are approximations.Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

In this episode host Hilary Stunda talks with international best selling author, speaker, and happiness coach Terri Lynn Murphy. Terri has written two books: Journey to My Soul Following Divine Navigation, 10 Minutes to a Happier You Start Your Day In a Positive Way and Co-Authored: The Wellness Universe Self-Care Guide 25 Tools for Happiness. The conversation starts with Hilary asking Terri how she stays positive amidst challenging times. Terri makes a point in saying that no matter what's happening in your life, make it a point to go deep into silence, meditation to find inner peace. As she says, “happiness: it's an inside job.” Terri stresses the importance of being aware of your thinking so you can manifest your best life, and how it's been scientifically proven that positive thinking creates a positive life. Terri shares that during an emotional crisis, she saw an energy emanating from her. She decided at that moment to devote her time on earth to getting as close as she could to this entity and began writing her first book. Terri mentions how creating word tracks and statements and repeating them creates new patterns of thought which lead to manifesting a new reality. She stresses the importance of creating this new mindset and then focusing on how you want your life to be. She shares favorite quote, “Your thoughts are energy, so think responsibly.” Terri says she has trained many people in the work place to do this and has seen positive results over and over again. She says the brain is like a hiking trail, it takes energy to create new paths. Hilary then asks Terri about her latest book, 10 Minutes To A Happier You. Terri tells that she had been nicknamed “Fortune Cookie” by a coworker due to her positive attitude, and she began a practice of sharing positive messages on Facebook every day. After hearing from people that claimed to not have time to meditate or center themselves, Terri decided that everybody has 10 minutes in their day, and chose that to be the message of her book. Hilary then asks about the Wellness Universe site. Terri shares that she met the woman who founded the site as they both had their own inspiration pages. Terri says that Wellness Universe is a place to go if you are struggling or if you are in need. There will always be someone on the wellness universe that can help you, from energy workers to therapists. The conversation circles back to how Terri got herself through a crisis in her life. Terri said she was distraught, but then the song “Staying Alive” by the Bee Gees played and she took it as a sign. In spite of being angry she knew this was her path and she asked God for help. She talks about how writing everything down in a journal helps. Terri says that her advice is to put all the negative in the journal and replace it with positive thoughts. She stresses how its scientifically proven that living in a happy state changes our brain functions. She says feeling like a victim doesn't serve anything. It's best to focus on where you want to see yourself in a better light, and to try to focus on feeling as good as you can.Then she and Hilary talk about how a happy perspective brings about synchronicity, and a state of flow where good things happen. In the next and final segment of this podcast, Dawn Prall speaks with Mike Wood from Vispero. Mike has been involved with Vispero for 15 years, and comes to it with a specialty in education. Dawn and Mike talk about the Assistive Technology devices that Vispero makes for people with low vision. They discuss what low vision means to the company and to the industry. Mike then tells Dawn about the origin of Vispero. The name is a combination of two Latin words, one being Visio, meaning vision, the other being Spero, meaning hope, which is the mission of the company. Vispero provides hope, determination and independence through their different products, whether it be hardware or software. They have been an industry leader since 1975. Mike talks about how to self-diagnose low vision. One of the signs of low vision is finding it difficult to do basic things like cooking or repairing things. Or, if you notice you need more light. He then talks about two Assistive Technology devices Vispero makes. One is a handheld video magnifier, which is one of the best-selling in the industry, called The Ruby. The Ruby, he says, is a great choice if you're reading off a menu. However, if you're at home and reading a newspaper, you might want a desktop magnifier like the Optelec Clear View. Mike talks about the various tools that people might benefit from with MacD such as a handheld video magnifier, a handheld optical magnifier, desktop video magnifier, or something that provides OCR capability, which is optimal character recognition, which is basically scanning and reading. This feature takes text, and then has it read back. Mike also mentions the key things to focus on when you have low vision are going to be magnification and how these handheld video magnifiers offer all those benefits. Dawn makes the point that that 'we don't see with our eyes, we see with our brain.' Dawn asks Mike about the differences between all the tools offered and Mike says the best place to learn more is on the Vispero website (vispero.com) where people can see exactly what they can get for their needs. The Assistive Technology tools are an investment in independence. Investing in devices that will help people perform tasks better. Dawn closes the segment by saying how Vispero is an industry leader in low vision Assistive Technology devices. Vispero is developing innovative solutions that will help people with low vision reach their full potential. What We Discuss in this Episode 02:17 “…Happiness is a choice. It's an inside job. And no matter what's going on in the world around us, we can find peace if we go deep enough into the silence. Meditation has been a great, great tool for me over my lifetime.” 03:13 “…My best advice would be to become aware of what you're thinking, because most of the time, most of us are just reacting to what's going on in the world, not realizing that we can generate our own feelings. …But you need to start becoming aware of what you're thinking and if your thoughts are supporting the life you want. It's been scientifically proven that when your mind is in positive state, you get better results.” 06:06 “…I'm going to devote my time on earth to getting as close to this entity as I can. And through years of meditation, I came through that cathartic release, which led to this experience. And I'm telling you, this experience changed me forever. Because we live in this human body. So many people are just unaware of the spiritual world. It's really hard and difficult to be happy. If you're not feeding all three parts of your being, right mind, body and soul.” 07:17 “…Your thoughts are energy. So think responsibly. We don't realize that the thoughts that we repeat over and over again, create our reality. So create a word track for your life…" 08:26 “…And another thing I've learned over time is, instead of saying I'm angry, or I'm happy, I feel happy. Use the word feeling because it's, it's more freeing. When you say I am angry, you're like, hung on to it and anchored to it. But when you say I feel angry, oh, well, I have the power to change my feelings.” 09:15 “…Focus on what you want your future life to be. It takes work. It's not easy. It's not easy.” 10:15 “Well, I've trained a lot of people. I try to help them create word tracks when we're in training……You read them over and over again until you finally create the energy and start believing. Once you have the confidence and the belief, it just starts to happen. I see it all the time with people.” 11:16 “…Our brain is just like a trail on a hiking trail. You use the same path over and over again, if you start a new path, it's tough. You have to cut through it and cut through it. But once it's created, your brain will go that way.” 13:01 “…There's somebody on the wellness universe that can help you. There are energy workers. There are all kinds of therapists, life coaches. Things just become much easier. When you don't battle it in your mind. You know, the best benefit I think I've received from meditating is just singularity of thought. There's not all the static in there anymore. And it just creates a flow.” 14:21 “…I went through like a year and a half period of what I just call waiting for death. Because the decision I made during divorce, which caused me to live separated from my children, was a guided decision. I knew it was just totally guided and I was angry at God.” 17:36 “…Well, the truth is, again, science is proven. When you live in a happy state, a peaceful state, any type of positivity, your brain functions better. And we're magnets. The better you feel, the better things you're going to attract.” 18:40 “…We can fill ourselves with fear and feel like a victim. But that's not going to serve you. Put the thought of where you want to see yourself in a better light. Just feel as good as you can. I know it's not easy…but you will benefit from it. You truly will.” 22:01 “…Vispero, which is spelled V I S P E R O is actually the combination of two Latin words, one being Visio. The other being Spero. Visio means the vision. And Spero means hope…Our mission is to provide hope, determination and independence through all of our different products, whether it be hardware or software that support those that are low vision.” 23:38 “…A few of the different things that I find are signs are you're finding it difficult to do basic things around the house, like cooking, sewing, or fixing and repairing things. Now another key factor is if you start to notice that you might need more light.” 24:08 “…One of the best selling in the industry, the Ruby is going to be really beneficial to maybe read the menu. But if you're at home, and you're maybe reading the newspaper, you might want a desktop magnifier like the Optelec Clear View. See, that's going to be more of a stationary device that you bring the materials to, as opposed to bring the device to the materials.” 25:19 “…Some of the tools that people might benefit from when they have MacD are a handheld video magnifier, a handheld optical magnifier, desktop video magnifier, or something that provides OCR capability, which is optimal character recognition, which is basically scanning and reading. So you can take text, and then have it read back to you. All of these different products fall under different brands within Vispero company.” 26:46 “…So The Ruby would fall in a handheld video magnifier category. These are electronic… Oftentimes, you need magnification support… Oftentimes you need more lighting. So it might be as simple as having a desk lamp, or changing the light bulbs to a different brightness and contrast. And these handheld video magnifiers offer all of those benefits.” 29:23 “…We are investing in devices that that will help them. We always say this, it's not to regain your sight, but to perform tasks better. Then you do see better because you're using the device.” 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/mds * Note: All listed transcript timings and wording are approximations.Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

In This Episode Dawn Prall welcomes George and Cordelia Peters, a couple who have been married for 45 years and have learned to succeed with George's low vision. Cordelia begins the interview by sharing how she met George while they both worked at a church radio station. Cordelia explains that George's search for work led both George and Cordelia to their Senator's office, and the Senator's office was able to secure George work in the New Cumberland Army Depot. Next, Dawn asks George to share his thoughts on his life and Cordelia. George explains that he sees Cordelia as a gift, and that he is proud that because of his work, Cordelia was able to attend college and earn her degree. He continues, recalling that his low-vision has given both him and Cordelia the opportunity to acquire a wide array of skills, including auto-repair and amateur radio. George also shares that he is a licensed SCUBA diver. George recollects how he learned braille while in the first grade, while at the same time teaching himself to read and write in print by copying the alphabet on a typewriter. He then explains his career in maintaining military helicopters and his work in the Civil Air Patrol, a position he enjoyed for 22 years, while also taking as many courses as possible to gain further qualification. Dawn asks George to share how he thrived in his career despite his low vision. George answers by pointing back to his education, emphasizing that his proactivity in finding the tools and skills he required is what allowed him to succeed in his life and in his marriage. George follows that advice by saying that people must have hobbies that will teach them, and to mimic the habits of successful people. Next, George explains how Cordelia has supported him, by driving him to his work or education. Cordelia concurs, sharing how she took the responsibility of driving George and monitoring their children to allow George to be able to attend Civil Air Patrol meetings, or for George to gain work experience in an auto mechanic's shop. George and Cordelia pivot to discussing their thoughts and their plans for the future. Cordelia explains that should anything happen to either of them, that they both would need to adapt to the changes due to their needs and the rural area in which they live. Dawn asks George to share his experience with Assistive Technology, and George describes how quickly he moved to acquire Assistive Technology to aid him once he became aware of it. Dawn asks George to share one last piece of advice to the audience; George answers by imploring that people use what they have to the fullest, and to embrace the skills they will need to use in the future. What We Discuss in this Episode This episode covers the following topics: Tenacity. Overcoming adversity. Education. Positive attitude. Life-long learning. Adaptability with life events. Quotables 6:06 “…That's just the way it is. I've had to be his driver. I've had to be his eyes, many times. I've helped out with things where it took my eyesight to see things more finely detailed.” 07:54 “…I would also like to think that what I've done has improved her life. I've given her a lot of opportunity. She would not be an amateur radio operator; she would not be involved in knowing how to work on vehicles had it not been for me. There are a lot of things that I kind of pushed her to do, even though she was involved in some education. I gave her the opportunity to go to college, mid-career when she lost her job at AT&T because I had a good job. And because I had that job, we were able to afford to send her to college, where she had the opportunity to get her college degree. She learned how to swim a lot better thanks to me, because I'm a certified scuba diver.” 10:12 “…We are heading out to Hawaii. We will go through the Panama Canal again for the second time. Out to Hawaii and beyond we will cross the international dateline we will visit a number of islands in the South Pacific and come back to San Diego and fly home. We just got back from a cruise. It took us all the way around South America.” 13:15 “…When I started, the very first thing that they insisted was that they didn't want me and there wasn't anything they could do. I asked if that was my welcome aboard speech, or should I be on the lookout for something later on. However, I worked successfully for three years. And when I left, I was active with Civil Air Patrol for 22 years, where I got a chance to fly in those same helicopters, the CH 47, the CH 54 and some other aircraft as well.” 14:30 “…And when I retired, I was working for the Department of the Navy. I was the lead technician. I retired out as a GS 12. And I started in Government as a WG 5.” 16:45 “…The first secret is getting the right education, and continuing to get education. And figuring out what you need to do. In other words, I figure if I can do it, I can do it.” 17:06 [Life Motto] “…Well, life doesn't come to you, you have to go to it.” 17:30 “…My advice to people is get involved, have hobbies that are going to teach you something. One of the greatest hobbies that I have is amateur radio. Because I'm around people that are doers…they're involved in a number of things as a general rule. Pay attention to people that are successful. Learn from them, keep your mouth shut, your ears open, and you will learn.” 25:17 “…Even if you were to lose your eyes totally, which will probably happen in my lifetime, use what you have to the fullest. It's a gift from God. If you have to go down the road of being totally blind, accept that it's gonna be tough. But learn the skills of blindness. You might want to do that even ahead of schedule to learn some of the skills of blindness. Learn braille, learn cane travel. These are all tools that you have in the box that you can use when you need them.” 28:58 “…The smart glasses allow me to do the soldering that I used to do with a telescopic lens.” Recommended Resources http://www.supportsight.org http://www.mymacdlife.org https://www.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://www.hinklestein.com https://www.maculardegeneration.net https://www.mymacularjournal.com https://www.facebook.com/groups/mymacularjournal https://www.health-union.com Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

My Mac D Life discusses everyday tools that can be used to navigate life with Macular Degeneration.Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

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.Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

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.Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

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.Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

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. Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

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. Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

My Mac D hosts take a peek into the mailbag to answer common questions surrounding Mac D that were sent in by listeners.Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

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.Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

Dr. Erin Kenny joins My Mac D life to discuss Low Vision and Vision Rehabilitation.  She is Chief of the William Feinbloom Vision Rehabilitation CenterSupport this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

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.Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

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/Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

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/ Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

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.comSupport this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

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/  Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

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/Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

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/ Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

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/ Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

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/ Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

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) Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

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)  Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations

You don't want to miss a thing, click to listen. A collection of personal, authentic MacD stories from and about patients, families, and caregivers. The Podcast brings experts, knowledge, info, and fun to the airwaves.Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations