Episódios
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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 -
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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 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 -
Host: Hilary Stunda
In 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.orghttps://www.evokekyne.comhttps://www.brightfocus.orghttp://www.mdsupport.orghttps://preventblindness.orghttps://www.macular.org/http://www.supportsight.orghttp://www.mymacdlife.orghttps://vispero.com/mdshttps://www.thrivingblindacademy.orghttps://lviamerica.comhttps://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.orghttps://www.evokekyne.comhttps://www.brightfocus.orghttp://www.mdsupport.orghttps://preventblindness.orghttps://www.macular.orghttp://www.supportsight.orghttp://www.mymacdlife.orghttps://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.orghttp://www.mymacdlife.orghttps://www.vispero.comhttps://www.freedomscientific.comhttps://www.freedomscientific.com/products/lowvision/omnireaderhttps://www.enhancedvision.comhttps://us.optelec.comhttps://www.healthyvisionassociation.comhttps://www.novartis.comhttps://www.centricbank.comhttps://www.hinklestein.comhttps://www.maculardegeneration.nethttps://www.mymacularjournal.comhttps://www.facebook.com/groups/mymacularjournalhttps://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.
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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.
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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.
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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.
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Dr. Erin Kenny joins My Mac D life to discuss Low Vision and Vision Rehabilitation.
She is Chief of the William Feinbloom Vision Rehabilitation Center
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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/
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