OE Patients

Author: Dorrie Rush

  • What’s In Your Go Bag?

    What’s In Your Go Bag?

    Extreme weather, and war, have a special way of eroding our, already tenuous, sense of safety. At this point flash floods and wild fires affect more people than we would have ever imagined, yet many are still caught totally off guard. Don’t be surprised by the urgent need to evacuate. By now we know everyone should have a bag ready to go when you have to get out in a hurry. 

    Obviously, the need for preparedness is essential for people with vision loss, as it is much more difficult to gather things in a rush when you cannot identify them easily with your eyes. An organized bag, waiting to be scooped up at a moment’s notice, will give you some peace of mind and a better sense of security.

    NASA image inside massive storm.
    NASA image inside massive storm.

    Heed the warnings. I was ill prepared for the damage done to my building, overlooking New York City’s East River on October 29, 2012. The evacuation order seemed extreme, so I ignored it and hunkered down at home. Power was lost hours before Hurricane Sandy wreaked her historic havoc on the island of Manhattan, breaching the rivers on both east and west sides. The super storm’s surge brought in nearly 2 feet of water, flooding the main lobby and destroying everything in it, including the majestic fig trees that stood in its beautiful atrium for 25 years. It left behind several inches of mud and decimated all the power, heat and air mechanisms contained on the lower level. It took more than a week to restore essential services to my home, while many New Yorkers were displaced for much longer periods. The day after, I packed the Go Bag, and walked it down 19 floors in a pitch black stairwell, never to challenge an evacuation order again.

    Start putting together that Go Bag today and then review and update it periodically. Think of it as a bag that holds the things you need to get by, with some degree of comfort, if displaced from home for a week. Keep it in check, don’t create a kit for surviving the wilderness. Begin with a list of must-have items, along with important documents. 

    Image of Backpack ready to go.
    Image of Backpack ready to go.

    Contents of the Go Bag 

    • Waterproof Sealable Bags – Protect everything
    • Documents – Passport, emergency contacts, etc.
    • Backpack – Select for comfort and don’t overstuff it
    • Emergency Cash – Small bills are best
    • Mobile Phone Chargers – Wired and portable
    • Masks – Protection from virus, flu, smoke from fires
    • Disinfectant Wipes to clean everything
    • Flashlight with Batteries
    • Travel Kit Holding all Personal Hygiene Items
    • Eye Glasses, Contacts, Solution, Magnifiers
    • Sunglasses
    • Hearing Aids and Batteries
    • Medications – Prescription and OTC
    • Changes of Clothing
    • Food and Water –  Bottled water, protein bars, nuts, dried fruit
    • Pet Food and Water

    Grab and Go

    • Wallet with ID, Credit Cards
    • Mobile Phone
    • Laptop, Tablet, Earphones
    • Sunglasses
    • Glasses, Contacts
    • Magnifier 

    Keep your Go Bag in a designated place and let family members know where it can be found. Keep the things you use everyday, together and in a place where you can grab them, with your bag, and go.

  • Frank Bruni’s Vision Lost and Found

    Frank Bruni’s Vision Lost and Found

    Upon opening his eyes one morning in October 2017, Frank Bruni finds his vision has changed. Making his morning coffee, he pours boiling water into a french press, but much of it misses the carafe and spills onto the counter. When he sits to transcribe an audio interview on his computer, he quickly discovers he’s having trouble making out the words as they appear to wobble on the screen. He wonders if it’s probably caused by the lingering sleepiness from the late night before? In the shower he tries to wash the fogginess out of his eyes, before going on with the days activities, “beating back any inkling of alarm.” This is the beginning of the story that is The Beauty of Dusk On Vision Lost and Found.  

    He sees an ophthalmologist and undergoes an arsenal of tests. Doctor #1 thinks it could be multiple sclerosis (but he’s wrong) and sends Frank on to a neuro-ophthalmologist. She repeats the arsenal and upon analysis renders a diagnosis. The vision loss in his right eye is most likely caused by a drop in blood pressure as he slept, resulting in restricted blood flow and causing a stroke of the eye, which damaged the optic nerve. The medical term for this condition is “non-arteritic anterior ischemic optic neuropathy,” also known by its acronym NAION. The bad news gets worse: there is no treatment. And if that’s not enough, there is one more thing, the doctor says there is a 40% chance it could happen in the other eye, (but this is not right either). The statistical risk is actually 20%, which is to say there is a definite chance he could go blind.

    Image of Frank Bruni, credit NY Times
    Image of Frank Bruni, credit NY Times

    The mostly horrific and overwhelming news includes one hopeful thread, the doctor tells Frank there is a treatment being tested in a clinical trial, however he’d have to move fast to qualify for participation. He does exactly that, jumping through all the requisite hoops. He soon finds himself being prepped for the first dose of medicine to be injected directly into his eye. The way he describes this shot in the eye is palpable, “like a splash of acid delivered with a heavyweight’s punch.”

    Instead of running away from the fear, he runs toward it, deliberately and with purpose. As “one eye closes another opens.” Frank Bruni begins to see the magnificence of human beings in a way that was not quite as clear before. He recognizes the inner strength, we don’t even know we have, until it kicks in, carrying us through the often abrupt and sometimes enormous challenges we are dealt. His clarity is sharpened by the many conversations and interviews he engages with old friends and new acquaintances dealing with adversity. It turns out if you talk about it, even in your own social circle, you will discover people you know, are dealing with more than you knew.  

    The Beauty of Dusk is about overcoming adversity with a sense of grace. It’s about finding our way through difficult times with a semblance of gratitude. It is about the human spirit that bonds us. Frank Bruni’s memoir comes at a time we are all in need of recovery.

    Get The Beauty of Dusk on Apple Books

    Get The Beauty of Dusk Audiobook on Apple Books

  • New Drug, Less Shots for AMD & DME 

    New Drug, Less Shots for AMD & DME 

    Vabysmo (faricimab-svoa), recently approved by the Food and Drug Administration, is the first bispecific antibody for eyes. The drug, developed by Roche Genentech to treat both wet age-related-macular degeneration and diabetic macular edema offers a dosing regimen that requires less frequency than injectable medications currently in use. Physicians and patients will likely agree, more options and less shots in the eye represent an important advance in the treatment of two leading causes of vision loss.

    Without effective treatment, patients with AMD and DME live with a progressive loss of detail vision causing difficulty reading, facial recognition and driving, while peripheral vision remains intact. Wet age-related macular degeneration happens in about 10% of all AMD cases and is marked by abnormal blood vessels that develop underneath the retina and cause bleeding and swelling of the macula. Common symptoms include blurriness and waviness or loss of central vision. Diabetic macular edema can occur at any stage of diabetic retinopathy marked by changes that lead to fluid accumulation, also known as edema, in the retina. If fluid accumulates in the macula, or the central area of the retina which provides your sharpest vision, the vision may become severely compromised.

    Charles C. Wykoff, MD, PhD, a Vabysmo phase 3 investigator and director of research at Retina Consultants of Texas, said in a press release “With Vabysmo, we now have the opportunity to offer patients a medicine that could improve their vision, potentially lowering treatment burden with fewer injections over time.”

    The new drug works by inhibiting 2 pathways, Ang-2 and VEGEF-A to reduce inflammation and leakage of blood vessels, minimizing the loss of vision. Vabysmo treatment begins with 4 monthly intravitreal injections, with follow up injections at 1 to 4 month increments.

    More at: VABYSMO Patient Website   

  • Toyota Spotlights Visually Impaired Athlete

    Toyota Spotlights Visually Impaired Athlete

    The story depicted in “Brothers,” a 60-second Toyota ad created to air during the 2022 Super Bowl and the Beijing Olympics, is based on the real lives of Brian and Robin McKeever. It opens with Robin teaching his younger brother to ski with glee. Growing up in Calgary, Canada, they develop a love for cross-country skiing and as their skills and training advance, they are preparing to compete with the best skiers in the world.

    The tenor suddenly changes, and the video image becomes blurry in the center. There is a close-up of his eye, then his face, and we hear a doctor say, “Brian, we have found that you have a condition known as Stargardt macular degeneration. At this time, there is no treatment.” Upon diagnosis he is 19 years old, but his athletic career is far from finished. 

    The brothers continue training together, Robin providing his brother with vocal guidance. The work they do will take Robin to the Olympics, and both to the Paralympic Winter Games, with Robin as Brian’s guide. As Brian’s central vision loss progressed, the McKeever brothers competed together at the 2002, 2006 and 2010 Para Games, winning 10 medals. Brian has won 17 Paralympic medals, 13 are gold, making him the most decorated Para cross-country skier, ever. He is currently training for the Beijing Paralympics in March.

    In a press release Toyota said the ad “shares an inspiring message of determination and spotlights the power of sport.” It is also a testament to the power of support. “I hope my story inspires viewers to start their impossible – whatever that might be,” said Brian McKeever. “I’ve learned firsthand that anything is possible with perseverance, and the support of a brother, like Robin.” Vision loss is not completely new to Brian’s family, his father is also affected by Stargardt Disease, as is his aunt. Having this point of reference and a positive role model, in time, helps him accept the diagnosis and understand the long game. “Looking back, those things that maybe did change are just tiny barriers compared to the big picture,” Brian says. “I’m losing my eyesight, and that’s a big challenge. But the reality is, once you start to look at how to move forward, the things that seemed like a big deal at the start ended up being inconsequential.”

    Thanks to Brian, Robin and Toyota for reminding us of what is possible.

    https://www.youtube.com/watch?v=x_UgHZdjgvQ

    Watch the Toyota Ad featuring the McKeever Brothers story

  • All About Audible

    All About Audible

    Audible.com is the preeminent seller of audiobooks, boasting more than 500,000 titles, including audible originals, podcasts, documentaries, comedy, journalism, kids, wellness, self-development, theater and more. They began building this impressive library of spoken content in 1995, somehow anticipating that we would all thoroughly enjoy listening to books. 

    Reading books in audio formats can beautifully bridge the gap vision loss can cause. Although at first, it may be a minor challenge to retrain yourself to read with your ears instead of your eyes, in no time you will begin loving the experience of being absorbed by the author’s wonderful work. Read an audio book with someone you love, take it with you for a walk, to the gym or on your commute to work.

    Cheerful woman with headphones listening to audiobook.
    Cheerful woman with headphones listening to audiobook.

    Access Audible with a membership plan, or not. Audiobooks can be purchased individually, as you wish. Membership plans are encouraged and include a 30-day free trial period at the start. Plans change so it’s best to review the Plan Options or consult with an Audible representative for clarity. For $7.95 a month, Audible Plus offers unlimited access to a select catalog of books, podcasts and audio sleep and meditation tracks. For $14.95 a month, Audible Premium Plus adds 1 audiobook credit per month from an expanded catalog of best sellers, a 30% discount on cash purchases and it allows you to return books you don’t like within 365 days. Give the gift of an Audible book, or a gift membership for 3, 6 or 12 months. 

    Digital content from Audible can be downloaded directly into and played on most Fire tablets, Kindle devices, and Kindle or Audible apps for Android. Don’t forget Alexa in this mix. Your Amazon Echo speaker will read your audiobooks to you as well; just say Alexa, Read My Book. Audiobooks can be purchased directly from the Audible app on an Amazon device. On an Apple device, members are able to download books directly on the app using Audible credits, however, credit card purchases must be transacted on the Audible.com website.

    Audible’s customer service support phone representatives are well equipped to help with all questions, issues and transactions. There are 4 options: Press 1 if you are visually impaired and they will get you to an Accessibility Specialist. Press 2 for questions about your Listening Experience. Press 3 for Membership Questions. Press 4 for Technical Support. 

    Audible Customer Support Line: 888-283-5051

    Audible Membership Options 

    This post was first published Nov 29, 2018 and updated Feb 1, 2022.

  • This Year Take Care

    This Year Take Care

    Getting to 2022 was no easy feat, so congratulations. On October 2, 2021, I stood on the National Mall surrounding the Washington Monument, in Washington DC, and observed the 700,000 white flags placed in a perfect and seemingly endless formation. Each flag in memory of an American who died of COVID. The powerful sight of this installation ended the next day, but the deaths continued. As of January 19, 2022, deaths have risen to over 857,000.

     

    Image shows white flag memorial installation at Washington Monument on October 2, 2021.

    Image shows white flag memorial installation at Washington Monument on October 2, 2021.

    The installation named, “In America: Remember,” was also a powerful reminder of our collective survival. I could not help but think of that as I watched the other living visitors to the massive field of flags, paying respect. Perhaps the best way to celebrate the life we continue is to take care of it. So many aspects of our lives have been affected by the pandemic, whether we contracted the virus or not. Even the luckiest among us is likely to be dealing with some collateral damage. The year ahead is the right time to recognize your need for recovery and make self care a priority.

    Life, as we knew it, has been interrupted by the pandemic. In some ways it is strikingly similar to the disruption caused by vision loss. And to be fair, we must acknowledge, dealing with both is a heavy load. If you’re feeling burnt out and exhausted, that would actually make sense.

    We can take steps to improve on behaviors that may have suffered under the stress. Here are some thoughts and ideas that might help as you evaluate and recover from your own particular pandemic injury. Begin a new year by taking care.

     

    Help for Your Head.

    Mental health and emotional well-being are front and center as we re-acclimate and find our path forward. We must take care of self first, before we can take care of others. Read the OE article linked below for smart steps and stress relieving strategies to help our recovery.

    Prioritize Your Emotional Health

     

    Eating Well.

    If good eating habits faltered during the pandemic, now is the time to get back to nourishing yourself with healthy food choices. Be mindful about your consumption and remember it’s best to focus on mostly unprocessed foods, including vegetables, fruits, nuts, beans, whole grains, fish and some meats. Keep your plate colorful and predominantly plant-based. The foods that hold  age-related macular degeneration at bay, are based on the same Mediterranean diet that promotes heart health. 

    The Anti-AMD Diet

     

    Think Small.

    There’s no sense trying to counter overwhelming change with more overwhelming change, so Keep the corrections small, even tiny. In the OE article linked below I recommend the bite size approach to productivity, while utilizing the 1-minute rule, micro learning and exercise snacks.

    Small Changes are Big

     

    Exercise, Sleep, Learn, Connect.

    The same practices, behaviors and habits that keep your brain sharp are major players in your overall health and well-being. Exercise daily, keep learning, sleep well and stay socially connected — it is key to maintaining cognition. 

    6 Ways to Keep Your Mind Young

     

    Have Fun.

    Don’t underestimate the importance of fun, it feels good and it’s good for us. Prioritize the people and activities that are most likely to create playfulness, connection and flow in your life on a regular basis. Read more on this subject from Catherine Price in The New York Times.

    Why We All Need to Have More Fun

     

  • Inspiring Stories of People Thriving With Vision Loss

    Inspiring Stories of People Thriving With Vision Loss

    We love to share stories of people succeeding with vision loss, at every age and stage of life. It reminds us all that there is no limit to what is possible. Each story has the power to inspire so many more to find the potential in perseverance. Read on to meet the artists, athletes, writers, filmmaker, judge and restaurateur who have flourished. There is a common thread that runs through these stories, vision lost and perspective gained.

    Rachel Christian says working remotely is a game changer for people with vision loss.
    Rachel Christian says working remotely is a game changer for people with vision loss.

    Rachel Christian, Journalist

    Rachel, a personal finance writer who is legally blind from cone dystrophy, finds working from home is profoundly empowering. She has control of her work environment, does not feel self-conscious around coworkers and she does not have to deal with the transportation hurdles inherent for visually impaired commuters. It’s a game changer.

    Here’s Why Working From Home Works for Rachel

    Issac Lidsky, Author

    Most of his sight was lost, by the age of 25, to retinitis pigmentosa. In the process he discovered that fear can be much more debilitating than vision loss. In his memoir, Eyes Wide Open, he discovered blindness could be overcome by letting go of overarching anxiety and inhibitions. Isaac says, “I’ve gained vision by losing my sight.” 

     More on Issac’s Enlightenment in “Don’t Be Blinded By Fear”

    Alexandra Joy Crocco, Photographer 

    She has a white cane in one hand and a camera in the other, which can be a confusing sight, but that just goes to show you can have an eye for photography without having good eyesight. Alexandra’s multiple vision problems are caused by albinism, and although she can’t see a lot of detail she has proven her ability to capture the special moments her clients treasure.   

    Here’s how Alexandra Achieves Career Milestone

    Lynda Lambert wearing her jewelry design.
    Lynda Lambert wearing her jewelry design.

    Lynda McKinney Lambert, Artist 

    A retired professor of fine arts and humanities has not let vision loss stop her from creating award winning art. Her vision loss resulting from ischemic optic neuropathy precipitated a new life, that for her had to remain centered in art. 

    Read Lynda’s story, Creative Vision: Blind Artist Earns Another Award

    Lily Mitchell, Filmmaker and Athlete

    She is determined to let nothing get in her way and looks forward to helping make the film business more accessible for people who are differently abled while helping to dispel the perpetuation of stereotypes. Lily is legally blind from cone rod dystrophy, a condition she was diagnosed with at the age of 11. 

    More on Lily’s Experience in Filmaking and Para Sports

    DC Circuit Judge David Tatel
    DC Circuit Judge David Tatel

    He has served on the United States Court of Appeal since 1994. Along every step of that way, he dealt with progressive vision loss, from retinitis pigmentosa, and found the resources he needed to succeed.  

    Listen to Life, Law and Vision Loss on Hadley Presents

    Gia Pergolini, Athlete

    Legal blindness from, Stargardt Disease, would not deter this world-class athlete. She set her sights on gold and took it in the 100 meter backstroke at the Tokyo Paralympics. At 17, she is inspiring people of every age to achieve their goals.

    Read “Gia Pergolini is a Champion”

    Ben Benson, Restaurateur 

    Legally blind from the age of 18, he built a storied career in New York City’s legendary restaurant business, beginning with the creation of the first Friday’s location, which would become an internationally recognized chain.

    Liston to Ben’s Extraordinary New York Success Story

    Frank Bruni, Journalist, Author and Professor 

    He entered the realm of vision loss, without warning, in 2017 as he awoke to a forever changed view caused by a stroke of the eye. Now a Duke University professor, he continues to communicate with readers through The New York Times and is about to publish his tenth book, The Beauty of Dusk: On Vision Lost and Found.

    Read The Frankness of Bruni

    Monet, da Vinci, Degas, O’Keefe, Renoir, Rembrandt, Artists

    Thanks to Perkins Learning for this enlightening article on the array of visual impairments that affected the most renowned artists in history. Vision loss did not hinder, in many cases it actually enhanced their work. 

    Ten Ways Vision Impairment Influenced Classic Artists 

  • OE Patients Best Of 2021

    OE Patients Best Of 2021

     

    It’s that most wonderful time of the year, when we circle back and take a look at OE’s most popular posts from 2021. Move forward and discover an audio guide for baking, advice on utilizing peripheral vision and the power of small changes. The list includes our most read content on accessible technology and emotional well-being.  We want you to be inspired to develop a new skill or create a good habit for the fresh new year!

    If you’d prefer to have the text of pages read to you, just click the button marked “Listen” on the upper right menu.

     

     

    Gia Pergolini shows gold medal triumph. Image Credit: Cady Studios
    Gia Pergolini shows gold medal triumph. Image Credit: Cady Studios

    Gia Pergolini is a Champion

    She is OE’s Person of the Year. At 17, Gia Pergolini is a world class, world record braking swimmer, and a gold medalist in the Tokyo Paralympics. She teaches us about strength and grace while living with vision loss.

    Read Now

     

     

    Image shows plate of delicious freshly baked brownies.
    Image shows plate of delicious freshly baked brownies.

    Breaking Eggs Makes Baking Audible

    Take a delightful baking class with professional baker and former Great British Bake-Off contestant, Ruby Tandon. Both the experience and the results are delicious! It will maKe you wish more cookbooks were audible.

    Read Now 

     

     

    Woman practicing eccentric viewing.
    Woman practicing eccentric viewing.

    8 Ways to Practice Eccentric Viewing 

    Advanced macular degeneration leaves a blind spot in the center, eccentric viewing can help you learn to actually see around it, utilizing the unaffected peripheral sight. Here are some easy ways to practice and make it natural. 

    Read Now

     

     

    Image shows: 2021 Happy New Year banner.
    Image shows: 2021 Happy New Year banner.

    This Year Small Changes Are Big

    Feeling overwhelmed by vision los, or the pandemic, try dealing with change in smaller, bite-size increments. Join us and explore ways to get things done in minutes instead of hours.  Breaking up monotony and boosting efficiency will help restore our sense of stability.

    Read Now

     

     

    Image shows Hadley workshop image of iPhone in hand.
    Image shows Hadley workshop image of iPhone in hand.

    Meet Hadley 2.0, Your Private Tutor 

    Hadley is the vision loss resource everyone needs to know. A welcoming place to learn technology, access podcasts, attend workshops, join discussion groups and more. Log in to this user friendly environment online, or they’ll even mail the printed content to you. It’s unique and amazing!

    Read Now

     

     

    Image shows: large screen with video meeting participants
    Image shows: large screen with video meeting participants

    Pandemic Silver Linings for Low Vision Patients 

    Well yes, we are so tired of talking about the pandemic, however, it cannot be denied, there were many interesting surprises in it for visually impaired people. 

    Read Now

     

     

    Image shows Apple AirTag in case with holder.
    Image shows Apple AirTag in case with holder.

    Lost and Found with AirTags

    Once again, Apple has created a product that is inclusive and exclusive, all at once. It’s also good for your health, because it eliminates the anxiety that occurs when you can find keys, wallets, etc., as you’re leaving the house.

    Read Now

     

     

    Old friends playing chess
    Old friends playing chess

    Don’t Allow Vision Loss  to Affect Your Cognition 

    We like to say, “vision loss affects your eyes not your brain,” but that is not totally true. Here are the tips for avoiding cognitive issues and dementia related to low vision.

    Read Now

     

     

    Image shows serene woman relaxing with a cup of tea.
    Image shows serene woman relaxing with a cup of tea.

    Prioritize Your Emotional Health

     Mental health does not take care of itself, you must be an active participant. Here is the excellent advice of our health & well-being expert.

    Read Now

     

  • At 90, Edythe Gets Her iPad

    At 90, Edythe Gets Her iPad

     

    In the early summer of 2013, Edythe Heyman came to my office, at the Lighthouse in New York, for a scheduled technology consultation. Diagnosed with macular degeneration in her 60’s, she had been legally blind for many years, and was then just months from her 90th birthday. With vision loss progressing, and no treatment or correction in sight, Edythe was referred to me, by her retina specialist, to explore the ways she might use an iPad. Seeking solutions to compensate for vision loss, she was particularly interested in finding ways she could continue reading The New York Times. I well understood the proposition, it was among the top requests from low vision patients and a loss I had experienced myself. 

    Although she did not use a personal computer, Edythe was not new to assistive technology. She utilized a video magnifier to read mail, for example, but it was not conducive to reading a newspaper.  She adopted an early version of the OrCam reader, but that too, proved to be less than optimal for reading the news. She was able, however, to satisfy her love of books, by switching to audiobooks, with a subscription to the National Library Service Talking Books program, early on.  

    At our first meeting, I demonstrated how Apple’s iOS devices used the VoiceOver screen reader to turn text to speech. We explored the ways Edythe might use an iPad to read The New York Times, read e-Books, audiobooks, and communicate by email, all by mobile apps.  She was anxious to give it a try, and we gave her the opportunity to navigate the touch screen, trying out some of the VoiceOver  gestures that give the iPad (and iPhone) a voice. She also got to try out some of the Siri voice commands and very quickly became interested to get started learning. I provided the details she would need to buy her iPad at the Apple Store and get it set up properly andWe reviewed how the training would be structured. I then cautioned Edythe, as I did everyone about to embark on the VoiceOver learning experience, “It will not be easy. You must be willing to work at it. Practice, on a daily basis, is essential for success. It will be frustrating at times, but soon it will become second nature. Learning VoiceOver is well worth the effort and it will change your life!” 

    A fair number of my potential students left  with the iPad or iPhone buying instructions in hand, and the cautionary words echoing in their head, never to be heard from again. Edythe Heyman returned one week later, with her new iPad, all set up and ready to go. She was able to accomplish her goal of reading her favorite newspaper again, everyday, with efficiency and with joy. She learned to communicate with family and friends by email, using a combination of Siri and VoiceOver, and she delighted in saving photos sent by family to her iPad Photos app.

     

    Photo of Edythe Heyman at age 92
    Photo of Edythe Heyman at age 92
    Image Credit: Lighthouse Guild

     

    Edythe was not only there to learn, she was also there to teach us. A Lighthouse Guild Vision+Health publication from 2015 states, “At 92 years old, Edythe Heyman proves that there is no age barrier to learning new technology. No longer able to read standard print, she has embraced accessible technology to help her stay informed and in touch.  ‘One of my great pleasures was taking The New York Times with me to the breakfast table and reading it. I can’t do that anymore,’ says Edythe, ‘Now I can access The New York Times app, listen to the latest books and use email.’

    Edythe Heyman passed away, at age 98, on December 1, 2021. The New York Times obituary in her memory ended with, “Edythe’s friends are asked simply to remember her.” She was a friend of mine and a generous supporter of the Association for Macular Diseases, OE Patients, Lighthouse Guild and many other organizations. She was an inspiration and she will be missed. 

     

  • Get Accessible News at NFB-Newsline

    Get Accessible News at NFB-Newsline

     

    It would be completely reasonable to expect that reading the news on a mobile app should be more accessible than ever, for people with vision loss, but this is not actually the case. The navigation of your favorite newspaper still feels rather unrefined.  Whether reading with your eyes, or a speech feature, the pages may suddenly lurch back or forward, leaving you searching to find your place again.  Articles loaded with ads, and other links, chronically  disrupt your focus. Depending on the day, a mobile screen reader might just leap over an entire section of text or mispronounce a bunch of words. The images frequently are not labeled, instead providing long digital codes in place of descriptions. It all makes you wonder, why is award winning journalism so hard to read?

    The solution that may resolve many of these issues is NFB- Newsline.  A fee free news service offering audio content to anyone who is blind, has low vision or is print disabled. Subscribers are granted access to over 500 publications including the Wall Street Journal, New York Times, USA Today, Time, Consumer Reports and hundreds more.  Select options for local news publications, emergency alerts and even local TV listings by provider.  There are many ways to get NEWSLINE, on an app, with Alexa on an Echo device, online or by email,  or dial in to listen on any phone. 

     

    Image shows young woman listening to the news on an iPhone.
    Image shows young woman listening to the news on an iPhone.

     

    iOS NEWSLINE MOBILE APP 

    Get the Apple iOS app, on the App Store, for use with iPhone, iPad and iPod Touch, all fully accessible with VoiceOver or Braille display.  The app has a free version of KNFB Reader Basic with functions that scan any printed text and read it aloud, on the go. 

     

    AMAZON ALEXA

    Hands free access via Alexa on any Echo product. Personalize settings and navigate to sections and articles using voice commands. 

    Visit Alexa instructions

    visit Alexa training video

    ONLINE & EMAIL

    Go to http://www.nfbnewslineonline.org/ to access or email full publications, sections or articles.

     

    DIAL IN BY PHONE

    NFB-NEWSLINe audio content can also be accessed by phone with the touch of buttons that enable reading and voice controls. 

    Visit NEWSLINE phone instructions

     

    There’s a lot available here, and it may seem overwhelming, so step back and take a breath. First sign up. Then decide how you want to access your news? Now follow the links for more info, or even better yet, call the wonderfully helpful information line for help getting set up and acclimated.

    Call NFB-NEWSLINE: 866-504-7300

     

    To sign up for Newsline call NFB or complete the application online. All subscribers to NLS Talking Books program are pre-approved. 

    Online Application

    Email: [email protected]

     

  • Reclaim Your Digital Focus

    Reclaim Your Digital Focus

     

    Loss of focus doesn’t only happen in the eyes, it also happens in the brain. One of the known killers of concentration is the smartphone with its unending stream of notifications, alerts, sounds, vibrations, reminders and the incessant ding of social media.  At any point in any given day your brain can be hijacked by a totally unwelcome intruder in the form of a digital message.

    The good news is, the very creators of this problem, are recognizing it, and have simultaneously released new tools designed to help us get some control over  the chronic distractions, and perhaps begin to recover our ever shrinking attention span. The Do Not Disturb setting, easily implemented by voice assistant in iOS or Android, is a quick way to shut your phone up as needed, but it requires a degree of discipline and is mostly engaged to promote a restful night’s sleep. In iOS 15, Apple adds a new level of settings to help your focus and in Android 12 you’ll find the settings, aptly named: Digital Wellbeing.

     

    Image shows woman at work making the “be quiet” gesture.
    Image shows woman at work making the “be quiet” gesture.

     

    Here’s how to begin minimizing distractions from your mobile devices, including iOS and Android tablets, although they seem to deliver far less noise, in general, as compared to their smartphone counterparts. 

     

    Apple iOS 15

    On an iPhone running iOS 15, go to Settings (or ask Siri to “Open Settings”) and scroll down to Focus. 

    • In Do Not Disturb you now have the option to share your settings across Apple devices
    • Configure and customize Focus Settings for when you’re at Work or in other Personal scenarios and iOS will guide you through the setup to determine when, where, who and on what schedule you receive messages 

     

    Android 12

    In Android, you can say, “Hey Google, Open the settings for Digital Wellbeing. 

    • Choose and set a schedule to select the time you want to block out distractions
    • Select the most distracting apps you want to disable when in Focus Mode
    • Controls in Digital Wellbeing allow you to select which alerts you wish to allow
    • In Do Not Disturb you can choose the People option and authorize anyone allowed to bother you when you are muting distractions
    • Some Android phones turn on “Shhh” mode when the phone is placed screen side down

     

    It does require a bit of set up and some self-discipline, but doesn’t take very long at all to appreciate the quiet and experience an immediate increase in your ability to get things done without interruption.  It gives back a sense of control, the peace and quiet is so much more interesting than the noise, enjoy it.

     

  • Legal Blindness Can Be Confusing

    Legal Blindness Can Be Confusing

    There is a term related to vision loss that is misunderstood and chronically misinterpreted. Most people have heard the term but do not know what it means. It consists of two words which do not clearly articulate their purpose. Let’s clarify what Legal Blindness is, and what it is not. 

    What is legal blindness? 

    Legal blindness is a government standard measurement of visual acuity that qualifies a person for disability benefits and disqualifies their ability to drive. The US Social Security Administration defines legal blindness as vision no better than 20/200 or a visual field of 20 degrees or less in both eyes. This means if something is 200 feet away, you have to stand 20 feet from it in order to see it clearly, but a person with 20/20 vision can see it clearly from 200 feet away.

    What is the difference between legal blindness and total blindness?

    Total blindness denotes a complete lack of vision, also referred to as no light perception (NLP). Approximately 15% of people who are legally blind are totally blind, the majority have varying degrees of visual impairment. The terms are frequently conflated, causing a good deal of the confusion.

    Can you be legally blind in one eye?

    No.  The vision in both eyes must be no better than 20/200 OR must have a visual field of 20 degrees or less.

    It is also possible to be deemed legally blind if one eye has a field of 20 degrees or less and the other eye has an acuity no better than 20/200.

    Can you be legally blind if your vision is correctable?

    No.  There is no such thing as, “legally blind without my glasses,” if your vision loss is correctable with lenses, be very grateful, you are not considered legally blind.

    Is your driver’s license revoked if classified as legally blind?

    No. There is no requirement that legal blindness be reported to the Department of Motor Vehicles. An eye doctor may advise you to stop driving long before you reach legal blindness. Don’t resist that advise, it should be taken seriously for your safety and the well-being of others you’ll encounter on the road. 

    Image shows woman looking at eye chart with one eye covered.
    Image shows woman looking at eye chart with one eye covered.

    Is legal blindness the same as actual blindness?

    No. About 15% of people who are legally blind are totally blind, 85% have impaired vision. Referring to everyone who meets the legal blindness qualification, as “blind” is not accurate or appropriate. It is really up to the individual, how they wish to identify.  While many vision loss terms have become largely outdated, the two that are widely used today are visually impaired and low vision, representing a spectrum that describes vision loss ranging from 20/70 to 20/1000 and beyond. 

    According to the CDC, approximately 12 million people in the US, over age 40, have low vision, or uncorrectable vision with an acuity of at best 20/70.  

    What are causes of legal blindness?

    Most legal blindness occurs in adults over the age of 40 and is caused by progressive eye diseases including age-related macular degeneration, diabetic retinopathy, cataracts, and glaucoma. Some people are visually impaired since birth and others inherit eye diseases, like retinitis pigmentosa, Stargardt Disease and Leber’s, that present earlier in life. Other illnesses and accidents can also cause severe vision loss that reaches the level of legal blindness.

    How do people deal with legal blindness?

    Legal blindness need not be a watershed moment, don’t be derailed by the psychology of it. Dealing with progressive vision loss should begin long before this point. If you are not notified of this milestone, it will more than likely pass without your knowledge. Keep things in perspective and use this opportunity to explore potentially new resources available to you. Ask your doctor for referral to vision rehabilitation services in your area, which you now may fully qualify for. 

    What benefits does legal blindness qualify for?

    Legal blindness means that you qualify for some government benefits that may include vision rehabilitation services, vocational training, disability benefits and some tax exemptions. Most benefits require further qualifications and an intensive application process. 

    Additional resources at: 

     VisionAware: Vision Rehabilitation Services

    VisionAware: Visual Impairment and Social Security